# Intestinal Blockage / Obstruction Support Group



## David

As those who have inflammatory bowel disease are at increased for intestinal blockages and intestinal perforations, it has been suggested that we create a thread detailing what a blockage or obstruction feels like.  Those of you who have had blockages, please share your experience in as much detail as possible.  Did anything feel different in the days leading up to the blockage, once there was a blockage, how did you feel, and any other pertinent information.  Personal accounts of partial blockages are welcome as well.  Many thank you's to those of you who share.


----------



## Grant

*What does an intestinal blockage or obstruction feel like?*

Obstruction is absolute agony. Had it happen 3 times & each time it was accompanied by projectile vomiting & literally seeing stars or rather flashing lights when I closed my eyes. The duty Dr who came out had a good listen to my belly & could hear no bowel sounds @ all. He called an ambulance(that never turned up). The next time it happened I called the duty Dr & he told me on the phone to get myself to A&E. The last time I just took myself in without asking.

Pain wise on a scale of 1 to 10 with 10 being the highest I'd rate it @ 9.5. 10 being the point where I pass out & I was very close to that. The pain is a spasmodic pain that gradually builds to a crescendo & then stops. Only to start again & again etc etc. Curiously with me even though the cause was one stricture the pain occurred in 3 different areas, 1st time central lower belly, 2nd time lower left & finally lower right.

Safe to say that if anyone gets these symptoms don't hesitate, get yourself to hospital. Without being over dramatic your life could depend on it.
Regards
Grant


----------



## Grant

That was the scarey bit David. Knowing I had a stricture never prepared me for an obstruction. It didn't feel any tighter than normal. When it hit me it was right out the blue twice, the third time I started to feel the onset of twinges building & didn't wait. Got myself in & Pain meds in by IV. Because of that it never built up to the crescendo that time. (I'm only 20 mins from a hospital)


----------



## ctrl z

I felt intense nausea and pain. I vomitted a lot. I never vomit so I knew something was definitely wrong and ended up driving myself to the hospital. I made it safely but that was a bad idea.

Anyway, the pain was horrible. I felt like someones hands were in my abdomen squeezing and twisting my intestines. The pain was in waves, much like Grant mentioned.

Leading up to the obstruction, nothing had happened out of the ordinary. It just happened.


----------



## Cornfieldgal

Had several obstructions over the years. With Crohn's the pain comes in waves but it was usually consistent. If it started at a 5 it would hover from 4-6. An obstruction was different in that the pain starts off as a mild cramp but then it builds like labor pains until you can't tolerate it anymore. I'd usually get constipation, then diarrhea, but no gas.  Looking back I was usually unable to pass gas at least 24 hrs prior to the pain. The pain was so severe I usually went to the ER begging for pain relief.  Hope that helps!


----------



## LindaS

I've had several obstructions and partial obstructions over the years.  Usually the pain starts out low, and it slowly builds.  I usually feel like if I could just pass gas or have a BM, it would go away, but I can't do either.  As the pain builds, I end up nauseous and often end up vomiting.  The pain gets to be so severe, that I can't think of anything else.  It also feels better to bend over than to straighten out.  And when I've had obstructions, morphine or dilaudid don't help at all.


----------



## sunflower

I have had two obstructions and neither were what are considered a normal experience.

First I had an obstruction caused by an adhesion wrapped around the bowel.  I had recently had our daughter, and woke up in the night with waves of pain, unlike I had ever felt before.  I remember thinking - "This must be how an obstruction feels!", though I have no idea why I would think that!  

The waves of pain continued to worsen, and by morning I was writhing in pain each time.  It was like the pain would happen when the peristalsis pushed against the adhesion, so it would start out small, build to excruciating, then slowly go away.  Later at the hospital I called my husband to check on the baby.  I started vomiting everything I had eaten over the last several days in reverse order.  That was super weird.  Things were not digested.  

When I got to the screaming stage, they finally carted me by ambulance to a different hospital.  They thought something had happened to me during delivery.  Finally the pain got so intense I passed out and they finally put me on morphine.  Days later, and after a million tests they finally decided to do an exploratory surgery.  They didn't expect to find the adhesion, but it was an easy fix!

My last one was a partial blockage caused by a stricture.  It wasn't particularly painful, but I was very uncomfortable.  I had had problems for quite some time, but no one would listen since constipation is not a symptom of Crohn's.  I finally went to my GP and said I had tried everything to go to the bathroom and couldn't even pass gas now. So he put me on some kind of high powered laxative.  I had to stay home from work for a week to do that.  

That helped relieve the pressure, but did not make me go to the bathroom without taking the laxative.  So, I finally decided to go to GI, and had to prep for a week to do the scopy.  After I finally got cleaned out, I finally realized how much pain I was in, and where the pain was.  After the doctor looked at me, the pain was where the stricture was!  I was also very ulcerated, but since I couldn't go to the bathroom correctly, the blood didn't show on my stool. 

I am still battling the constipation even though the stricture is gone. (yay Humira!)  The doctor thinks I may have scar tissue in the other layers of the intestinal wall that is keeping that area from being able to relax as much, and causes things to back up there.  That whole area of my intestine is scar tissue, which should cause me to have diarrhea since there would be reduced absorption in that area.  But, I am still somewhat blocked up.  So, we have to keep our eye on it.

Symptoms can be different depending on where they are in the bowel, and what is causing the obstruction.  If things are not normal, it is worth it to get it checked out.  And even if they don't see anything the first time, if it is still bothering you - go back.  Obstructions are not always clear cut on xray.  Neither one of mine showed up right - but they were real.


----------



## GI Joe

Mine was the most painful experience of my life. It started out as just a little discomfort and cramping type pain which was intense but went away after a minute or so. Later, along with the pain, I started to vomit over and over again. Over a couple of hours, the cramping became constant pain growing so intense I passed out. My wife got me to the ER and I was taken in for emergency surgery.


----------



## mkhopper

I've had numerous partial obstructions in the past and all were thankfully relieved in just a few hours with pain and muscle relaxer medications.   (Dilaudid and Valium)

I've also had one full obstruction which resulted in needing a draining NG tube for 24 hours.  Uncomfortable as hell, but it did stop the pain.

As for the pain during an episode, I'd rate it on a scale of 1 to 10 at about 36.
Easily the most intense pain I've ever felt.

For me the pain begins just below the stomach, feeling like cramping sensation which then rapidly scales to an intense squeezing and then it very slowly lets go.  Usually I'll hear and feel rumblings while the wave ramps down as well.

These waves of pain last for 10 seconds or so though sometimes up to half a minute and at the height of the most intense waves, they occur about once per minute.


----------



## Allystyle

Mine was like a volcano building up! 
Would get tight sharp pain then have to hold my breath for 5 secs then heard a loud noise like a bomb going off inside then it would ease off and I could breath again! 

Wave pain is definately best way to describe it, mine was due to food trying to pass a stricture which was blocked.

Got to point of having 8 Tylex at night to get past pain! 
You could feel it also if you put a hand on my stomach, like I had a baby kicking lol

The wind can also be excruciating pain too. 

:-(


----------



## Jennifer

I had a blockage when I was around 13 years old (16 years ago) and I remember feeling sick (flu like symptoms) and then had sudden intense pain in my abdomen and threw up not too long after the pain came. I was placed in the hospital for a week or so and was put on Prednisone, Asacol and 6MP to reduce the inflammation (the cause of my blockage). I really don't remember much more than that. I can't recall how long I felt sick for (my guess is a few days) and the intense pain came on quickly and was less after I vomited.


----------



## Crohn's 35

I can't add to any of these post, it is by far the worst pain and my biggest fear of having another one ...after 5-6 of them having a baby natural is a walk in the park, and I ain't foolin"!!!


----------



## Emily

I had a stricture where my colon was smaller than the diameter of a pencil, which my GI described as essentially a blockage. Like other people said, it just hit me one night, with the pain being severe beyond description and coming in waves. It is so intense that there is literally nothing that can be done to alleviate the pain. When the spasms stop for maybe 1 or 2 minutes, there is no better feeling of relief. And just when you think maybe it ends, a new wave hits you. I have never felt worse pain in my life.

Also I noticed that I had trouble breathing, like my whole body was in such distress that my breathing was being neglected. I remember that night too vividly lying in a hotel bed gasping for breath in the fetal position sobbing. 
Anyway, I think if this would happen again to me, I would have no doubt in my mind what was going on. There is no way to ignore that kind of pain.

Also, nothing was particularly different in the days leading up to it. Who knows what the trigger is. One minute I was fine, next minute... gosh just remembering how that felt rattles me.


----------



## hawkeye

Emily said:


> Also I noticed that I had trouble breathing, like my whole body was in such distress that my breathing was being neglected.


Interesting about the breathing issue, when I talked to the nurse at our provincial 1-800 telecare number, her line of questioning led my to think my symptoms were similar to those of heart attack.

Mine came on in the afternoon after a morning colonoscopy (not a lot of the prep camp out - so here was likely something going on before the prep). I was very nauseous and had what started as a dull pain across my abdomen at the bottom of the rib cage then got sharper and then came and went in waves.  It was painful even what I was lying down. 

When I called our 1-800 health number where you can consult with an RN they told me to go to he hospital and that they would fax a record of the call to emerg. 

After going to emerg., I ended up getting an x-ray that the doctor said was spectacular (not a good thing) apparently there was something in the radiology report about the transverse colon being stretched to a width of 10-11cm because of the obstructon.

It took fentanyl to knock the pain down.  They seemed really willing to give me pain meds after the x-ray. I was admitted for a couple of days and given steroids via IV.


----------



## kllyeve

I have had several partial obstructions.  The descriptions everyone else has given are very much the same as I what I went through.

It is easily so much pain that you shouldn't have any doubt tht medical attention is required.  Now convincing the dr's in ER that you know what is wrong and that you need pain meds and IV fluids ASAP or you'll be in real trouble is quite another story!


----------



## scl

Let me start by saying I have a very high pain threshold.  I delivered two children via natural childbirth and rated the pain for both at a 2.  There are other instances where my ability to handle pain was clear. 

I was diagnosed with CD when I suffered my first blockage.  The first sign that something was wrong, was that I was not hungry after not having eaten for about 7 hours.  I forced myself to have dinner anyway.  You won't believe what I ate that night.  Something called "Living Lasagna" made entirely from raw vegetables - thin strips of zucchini to replicate pasta, spinach leaves, etc.  Probably the worst thing a Crohn's patient could eat. 

Anyway, things went south pretty quickly and I went to bed early around 8:00 p.m..  Wave after wave of intense pain followed for about 3-4 hours.  Vomiting started about this time.  By the time my husband came to bed around 1:00 a.m., I was panting with pain.   I finally asked him to call an ambulance after suffering another hour or two because I really couldn't walk, or couldn't fathom sitting in a waiting room.

One of the most uncomfortable things was having to drink contrast prior to CT scan.  I told the nurses there was no way I could drink it all and they just asked that I do my best.  I got through half of it and warned them that one false move on my part would send it right back up.  Surprisingly, I made it through the scan and when they moved be back on the gurney, it all came up.

The NG tube followed which I hated, but have to admit, it did provide relief.  Hospitalized for 5 days with other tests to confirm CD.


----------



## Alisa

Thanks everyone for your insights. I've never had one and pray I never do. It does not sound like an experience anyone should have to endure. Now if it were to ever happen I would at least know some signs and what to tell the doctor.


----------



## scl

Pen said:


> I can't add to any of these post, it is by far the worst pain and my biggest fear of having another one ...after 5-6 of them having a baby natural is a walk in the park, and I ain't foolin"!!!


I rated natural childbirth (did it twice) a 2 on the pain scale. Intestinal blockage, easily an 8.  Give me natural childbirth any day.


----------



## Terriernut

I had a sticture and blockage in the sigmoid.  Unfortunately, it perforated..twice. Once in 2009, again in 2010.  The pain doubled me over, simply unable to walk upright.  Night sweats, hot flushes, agonizing pain.  As it is occuring it is simply uncontrollable pain.  It may not be continuous.  Sadly I was NOT on the floor as I have a pain tolerance of an OX.  I was still working.  This is me being STUPID.  This is me having a stoma because of that.  Dont mess with this stuff people.

Now having the SAME issues in my Transverse colon.  This time, the GI's arent taking me seriously.  Well DUH.  Expect me to report on my total removal of colon soon!


----------



## Angrybird

I had a stricture that my surgeon confirmed last week had nearly become a complete blockage.  The onset of it seemed quite sudden, one day I felt alright, the next I had diarrhoea and gradually worsening stomach pain.  Leading right up to the op the pain was like nothing I had ever experienced before, I couldn't tolerate food anymore so was on Modulen drinks.  It hurt to move and walking became an excercise of torture it would literally take my breath away. Like Misty I worked up until the day before the op - perhaps not the best of ideas.  The pain from the op was much more preferable, this just seemed to sting similar to the pain I had when my ears were pierced - easily tolerable. If I'm lucky I have roughly a 5 year window until my next one - yay!


----------



## Sybil Vane

I've had a lot of partial obstructions and one complete obstruction and I agree with everyone else--the pain came in awful waves like childbirth. I will go through the pain at home with two norco and phenergan because I can't go to the hopsital each time--I can't afford the time away from my family and work. I also feel like I can't afford any more radiation from the CT scans. But I will go if it doesn't "break" in 12 hours. Mine usually reach a crescendo (like others have said) of vomiting and passing out. Then, the pain is gone. I feel like crap for a few days afterward. Sometimes I don't vomit--it really depends on what I've had to eat. 

The weird thing is, that for me, whenever I feel really, really good, a blockage happens a day or two later. My family pointed this out to me--my sister noticed that when I told her I was feeling really good, that it was a bad sign. Now, when I feel really good, I stop eating. It's better not to add any food to the mix. 

And I agree with the others re: NG tubes. I love them! They are horrible going down, but the relief is so sweet. A nurse told me that I'm the first patient she's had in 20 years to beg for an NG tube!


----------



## Sybil Vane

scl said:


> I rated natural childbirth (did it twice) a 2 on the pain scale. Intestinal blockage, easily an 8.  Give me natural childbirth any day.


SCL-- I agree! And with natural childbirth, you at least get a baby out of the mix! :tongue:


----------



## stickman7755

I had the "night of the killer pea's" a couple months ago. It was in the middle of my flare this past October. My dad convinced me that I could eat pea's for dinner since it wasn't on my list of foods I couldn't eat, big mistake. I ate around 5 pm. Starting around 10 pm I started having pains in the strictured part of my TI. I have a very high pain tolerance and the first pains were worse then when I snapped my collar bone. I was at a friends house when they started then I went home around 11pm. The pain was so intense I got to a point where I was either gonna go to the hospital or pass out from the pain. Luckily I passed out and woke up and everything was ok again. Looking back I really should have gone to the hospital. But I wish that pain upon no one. That is the day where I began to become scared to eat certain foods because I didn't want to go through that amount of pain again.


----------



## Crohn's 35

scl said:


> I rated natural childbirth (did it twice) a 2 on the pain scale. Intestinal blockage, easily an 8.  Give me natural childbirth any day.


My Blockage was a 10+...childbirth I didnt even wince and my bp was perfect... Blockage, not enough morphine on the planet!


----------



## Bowmancrew

After reading these I wonder if that is what my "episodes" we're/are.  I would always get them at the same spot.  And usually after not going to the bathroom several days.  I would be I labor like pain and in the bathroom for an hour or two.  It would start off as hard stool and by the end it was d and I was completely wiped out from the event.  Pain would be gone though.  The last time it happened it had been 9 days since going to the bathroom and it started off as pencil thin and flat .  My old gi gave me an example like a balloon that is just more narrow in certain areas.  I don't think normal narrowing would cause me so much pain.  Thank you all for your stories.


----------



## kenyasolovely

My preforation felt like being stabbed in the stomach in the same spot over and over and over and over again. The vomiting was to the point it was coming out of my nose (sorry so graphic). The pain on a 1 to 10 was a 10. I was in so much pain, breathing so hard I collapsed my lung.


----------



## kenyasolovely

scl said:


> I rated natural childbirth (did it twice) a 2 on the pain scale. Intestinal blockage, easily an 8.  Give me natural childbirth any day.


Me too! Both my births were not even bad...at all!


----------



## braveheart

I had a blockage once and Grant gave the exact description how I felt like.



Grant said:


> Obstruction is absolute agony. Had it happen 3 times & each time it was accompanied by projectile vomiting & literally seeing stars


Such an awfull situation. uke_r:

I went to ER.   I was given very strong pain killers and there was no relief.  They saw the blockage in an X-rays and decided to put me the NG tube...
http://en.wikipedia.org/wiki/Nasogastric_intubation

All of a sudden it was like a volcano.  A green liquid come up from my stomach through the tube.  The nurse has almost no time to connect the other end of the tube to the plastic bag.   The green liquid was spilted around the place.  Then, he could connect the tube to the plastic bag and it continued draining. The relief come in a minute.


----------



## scl

The things we say to each other around here, I don't even talk to my husband about.


----------



## pjmel

I had two obstructions (possibly only partial as I didn't require surgery) - woke up in the middle of the night with INTENSE pain and cramping the the belly, feeling like I needed to go to the loo but when I tried nothing happened. Lower back pain also accompanied the belly pain. Usually the vomiting would arrive an hour or two after the pain started. When I start vomiting I know I need to go to the hospital. On the first occasion I was given two doses of morphine - this didn't even make a dent in the pain. They also gave me something for the nausea. When the pain wasn't passing they gave me some buscopan via an injection - this has been the only thing that would relieve the pain. On the first occasion I was sent to a bigger hospital, the second time the obstruction passed quite quickly after I was given the buscopan so I was able to convince them to send me home. For a few days after each incident, I felt like I had been punched in the belly. Haven't had one for a few years now - SO thankful for that. It really is the most awful pain.


----------



## Sailorluna

I had pain and vomiting episodes (maybe they were partial obstructions and I did not know) on a fairly regular basis during the 6 months leading up to the obstruction  that resulted in my resection and diagnosis. During that time I had been assured that it was how my IBS "presented" what a crock. 

Toward the end i had a couple weekends where I would puke over, and over and over for the entire weekend. I would vomit brown liquid that smelled a lot like what little was coming out the other end. Told the docs that and they just nodded gave me more zofran and sent me home. When I finally ended up in the ER and mentioned the color and smell to the ER docs, they immediately suspected it was a blockage. I guess it was the stuff that could not get through the blockage coming back out the only way it can.

Just one more symptom for the list.  

The other thing that is important to note is the power of denial. It is easy to talk yourself into believing it is not a big deal or that you are over reacting or imagining things.


----------



## Sybil Vane

SailorLuna, was it your GI doctor who would send you home with Zofran?! That's awful! I had an obstruction at the site of my last surgery and the surgeons kept telling me to eat and eat and it was awful. I had a similar experience throwing up what was essentially feces. I used to use a certain type of toothpaste and I can't use that toothpaste anymore because I would use it to clean my teeth at the hospital over and over again. They didn't believe that I had a problem until I said that I could not eat and they couldn't make me (I had to act like a baby in order to get a CT scan that said my surgery site was swollen shut and that I had an abscess.) I then begged for an NG tube, and when they saw what was coming out of it, one doc said, "Hey, you weren't kidding." And this was with an IBD surgeon, not a general surgeon. I hate doctors.


----------



## MADiMarc

I had a blockage that snuck up on me (I should have known better, I wasn't a newbie).  It started out as just more pain in my stomach.  Then, I was really bloated.  Then the poop that came out was REALLY smelly (worse than usual).  Then, everything stopped!  My stomach started getting bigger to the point I really looked 6 months pregnant.  My stomach was hotter on one side then the other.  I went to my GI after about two weeks, not because of the pain but do to the bloating and the heat.  He gave me some pills, sent me home.  I wound up in the ER and my GP admitted me!  He said "You got yourself a blockage, kiddo.  How long has this been going on?". I thought he was going to throttle me!  

The point:  it didn't really hurt that badly in the two to three weeks it had been happening.  It was just the last 6 hours that it was at a 10+.  It was the fact that my stomach was so much hotter on one side then the other that had me seeking medical attention.


----------



## mere282

*partial bowel exp..*

I'm still in the testing stages... I had a partial obstruction... i thought i had a bug at first... Bad d... then day 2 cramping.... I couldnt stand up straight.. third day my hubby made me go to the er.... I was sick for about 2 weeks...


----------



## jlanier

I can honestly that it is definitely the worst pain ever. I basically ended up getting to the point where I could not move without hurting so bad that I nearly screamed.  I was throwing up with just the sip of anything, and had diarrhea. When I got to the hospital, my colon and small intestine had perforated as a result. It is definitely not something to mess with.  As a result I ended up having to get a temporary ileostomy.


----------



## Chiefmeister

I had a full small bowel obstruction and remember waking up at 4 am with the worst pain imaginable. I knew I couldn't drive to the hospital and didn't want to wake my family so early, so I just sucked it up for a few hours. Only had been diagnosed with Crohn's for about 9 months at this stage and was fully recovered from resection surgery 6 months earlier. 

It basically feels like the most intense stomach cramps you can get and for me it came in waves, so I'd get a breather for about 5 mins before it all started again. I didn't have any vomiting at this stage yet as I think the blockage was still manifesting itself.

Went to the local hospital, thinking I had a flare up (was not aware of obstructions at this stage), who sent me home saying I had a stomach bug!!

Pain continued and increased at home, and now with major vomiting each time I tried to eat. Realized that I hadn't opened my bowels all days which was strange as I normally go about 7-9 times a day.

Finally, went to a different hospital who decided to keep me in and observe. Unfortunately it was Easter weekend so did not get to see a bowel surgeon until 4 days later, who immediately identified a small bowel obstruction.

I was only in pain on the first day, as the blockage was actually taking place. Once I was blocked, I wasn't in any pain. Although did have a tube up my nose and was nil by mouth for 14 days.

Blockage was caused by adhesions most likely from my previous surgery and not due to active crohn's.

Hope this helps.


----------



## jonathanzn

David said:


> As those who have inflammatory bowel disease are at increased for intestinal blockages and obstruction intestinal perforations[/URL], it has been suggested that we create a thread detailing what a blockage or obstruction feels like.  Those of you who have had blockages, please share your experience in as much detail as possible.  Did anything feel different in the days leading up to the blockage, once there was a blockage, how did you feel, and any other pertinent information.  Personal accounts of partial blockages are welcome as well.  Many thank you's to those of you who share.


David, hi, I have an question. How could I tell my intestinal half-obstruction caused by inflammation from scarring? Especially, when my symptom is getting worse, maybe the tissue is going from normal inflammation to scarring, that could make worse, or even need surgery.  thanks!


----------



## Nerple

My experiences were pretty similiar to those listed.  I started noticing it shortly after eating.  First feels just like I was gassy and that the night would probably be spent in close proximity to the bathroom.   A few hours would pass and what felt like minor abdominal cramps would start and I would indeed spend a few trips to the bathroom.  The cramping would gradually get more and more severe.  Vomitting would start after about 10-12 hours and continue for a long while, long after everything from my stomach was evacuated and I was just vomitting bile.  Eventually the cramping sensation would get so severe I didn't want to move.  And knowing I havent had any liquids in 24 hours I would attempt to get some water in my system depiste the idea of drinking being an absolutely repulsive though.  And my body would reject everything I tried, even as little as 5-10mL of water.   Think the two times I've been to the ER for an obstruction I called the pain 6's on a scale of 10.

But damn do I hate the NG tubes.


----------



## Mama & Mac

Good morning all,
I suffer from partial obstructions all the time, due to all surgeries I have had(lots of scare tissu) and they are bad........but I have had to have 2 emergency surgeries due complete obstructions... It is by far the worst pain I have ever been in, you know when it's happenes cause you feel pain in your lower chest, right at the v in your rib cage, also in your lower back, if the obstruction has been building up for awhile,hours even days only liquid will come out as stool, then it will stop and the pain will get worse, then i start to run a fever, and the inevitable vomiting, at this point i go to the hospital, they start an IV, stop all oral intake, start pain meds,then a NG tube to help remove the fluid in my belly and it helps, my doctor will start prednisone, and I wait, maybe the blockage passes or they go in and get it. Don't know if that's how others feel, but it's the worst for me...I'd rather kidney stones!...


----------



## David

jonathanzn said:


> David, hi, I have an question. How could I tell my intestinal half-obstruction caused by inflammation from scarring? Especially, when my symptom is getting worse, maybe the tissue is going from normal inflammation to scarring, that could make worse, or even need surgery.  thanks!


Unfortunately, you can't tell without testing.  The best test that I know of is the Magnetic Resonance Enterography (a MRI where you drink a polyethylene glycol solution) which you can read more about here.


----------



## Fosterfamily2303

Question...how many days did u have the waves of pain? And did u find with a partial obstruction u were unable to eat as well?


----------



## Jennifer

@ Fosterfamily2303 - I don't recall how many days I had waves of pain, was just generally unwell and wasn't able to eat much at all. Everything I ate made me feel sick. I eventually started throwing up.


----------



## ctrl z

Fosterfamily2303 said:


> Question...how many days did u have the waves of pain? And did u find with a partial obstruction u were unable to eat as well?


I don't know how everyone else treats their waves of pain but if it doesn't correct itself in 8 to 12 hours then I go to the ER. When this happens to me, whether it is a full obstruction or partial obstruction there is too much pain to consider eating. It would only worsen and prolong the pain. If fully obstructed,  well... there is nothing going down. Anything that is in my stomach is coming back up and I rarely vomit so going to the ER is a no-brainer.

I have been warned by my doctor to not take this lightly. A perforation could occur.


----------



## Nerple

My appetite absolutely disappears when I have a partial obstruction.  The pain has lasted anywhere from 6 hours during my most recent one to 3 days during my first one. Though the worst one I had I was put on morphine and something 10 times stronger than morphine after 2.5 days so not sure how much longer it would have lasted.


----------



## Fosterfamily2303

Thanks. I am a bet conserned. I was having direhha like every 40 min...then it slowed down to every few hours. It's been 3 days without a bm. I am on nicatotics for pain and have not been eating much. I was able to keep food down but now I can't. I have waves of pain that come and go...ale:

I am due to prep for a collonscopy Sunday and concerned..also was having bloody bm ...hope I dont loose too much blood with the prep:shifty:


----------



## Nerple

That sounds a lot like an obstruction.  Especially if the pain is in the center of the stomach like 2 inches or so above the navel.  At least that is where mine is like a really bad stomach cramp.   When obstructed, the liver continues to fill your stomach with bile so since it can't drain, it has nowhere else to go but out through vomiting.  And I usually have a bout of diarrhea right before the pain commences as the last of the excrement that made it though before the blockage leaves.


----------



## Fosterfamily2303

My pain is right at the belly button. When I throw up its just the food I tried to eat...no green bile or anything.


----------



## Nerple

The bile won't be green, it's sort of clear and there isn't much of it.  At least in ym experiences.  But if you haven't had a BM for 3 days and this pain has been going on for more than a day, I'd seriously consider getting to the ER.  MY GI's personal recommendation for me is to consult him when I begin vomiting or go in to the ER if he isn't in when vomiting starts.


----------



## Fosterfamily2303

I guess the only reason I haven't gone is because my hospitals around her are ridiculous! I had no issues until my surgery last Wednesday...Thursday woke up to all of this for the first time. They sent me home bleeding and not even knowing if it was from surgery or not. All they could tell me was it was not hemoroids. 

Anyway...went too far into detail. Thanks for your help!!!


----------



## Irene3

Not sure how many obstructions Iv had. First few times I didn't know what was wrong, as I'd been told by gp's that I had a tummy bug. The pain of full obstruction is indescribable, though the first reply covered it well. I wouldn't put it at 9.5, because for me, perforated bowel was by far worse, but it's horrible pain none the less. After a few, I'd notice that my upper abdomen would get a sharp pain, every few minutes, before the full obstruction pain, which is over a larger area. When this would begin, I'd tidy up and what not, knowing that the pain would get worse. The vomiting is horrible, and shaking cold sweats, which is the bodies shock reaction. After being diagnosed, I went into hospital with the worst obstructions, but by then there was over 59cm of stricturing, and abcesses, so it was horrible. :/


----------



## madferrit

has to be the most painful experience ever.
Stomach swelled , strong smells made me want to vomit- which i did-alot!
bowel noises stopped, violent diarrhea, violent vomiting, felt confused (due to dehydration) was unable to eat or drink as it would come out both ends (still like water)
Eventually vomited bile due to lack of anything going in. Sweating, shaking,exhaustion, bad breath,sunken eyes, sore bones but its the pain i'll never forget, as someone else has mentioned its very much like labour, but your so exhausted it feels like your going to die there and then. oh and you stop passing wind/gas (my doc always says if i stop farting come straight in!)

I snapped my Radius bone in January- was extremly painful but still comes nowhere near obstruction pain!


----------



## CheerBear12

I had an obstruction it really painful they told me too stop the buscopan they werent sure whether it was that. It never made much difference. I was still going 20-30 times a day even when I had an obstruction. My stomach swelled up like i was 9 months pregnant and my stomach was in agony. I had to have an emergency total colectomy very nearly perforated:O


----------



## kiny

My obstruction was a result of not getting medication and after a long time inflammation got so bad that it caused blockage. (I never experienced vomiting for some reason)

The blockage feels like constipation, you feel bloated. The day that I did manage to go to the bathroom resulted in a rupture of the intestine, followed by blood loss an fainting a few seconds afterwards. 

Next I was put on remicade, I still have slight stricturing here and there and plaque (which is a bit of adhesion in one place), most of my symptoms are better now.


----------



## scoutfinch

Thanks everyone for contributing your stories and experiences.  After reading through this thread, I suspect I may be developing an obstruction.  I have a section of narrowing in my small intestine and have been in a strong flare for over 2 months.  Recent symptoms which lead me to believe obstruction is developing are: feeling very full after eating only a little, bloating and distension of belly and abdomen, nausea, a feeling of inflammation and very tight squeezing in my intestines which almost feels like gas pain, strong sharp clear pains and pain that is like a lasting tight ache, nausea (but no vomiting), gurgling noises - sometimes like water glugging down a drain that's recently unplugged, sometimes like a tight wheezing.  

Right now, I'm still having regular bowel movements and have not vomited at all.  Is there a timeframe after which obstruction occurs that I will experience a stoppage of BM's and/or commencement of vomiting?  Basically, is there any way I can predict when an obstruction has occurred so that I can head to the ER before it gets truly horrible?


----------



## Ihurt

Hi there,

Sorry you are struggling right now. I have not had an obstruction, but everything I have read up on it says that with an obstruction, you can feel A LOT of pain. I also know bloating and nausea are other symptoms as well. But those symptoms can happen even with no obstruction. I also get that gurglings in my intestines where it sounds like water gurgling down the drain. Not sure, I just assumed it was that my gut was upset. I guess the only way to know is to go to your GI doc and have them check. How are your bowel movements? Are they regular formed or diarhea? 

I have motlity issues of my upper gut and I would get that tight squeezong feelings as well as feeling full after only one bite of food. There was a point I could only eat baby food. This was like 6 years ago and I was dx with the motility issue. I guess if I were you, I would go to the doctor and have them check you out. I mean that is the only real way to know what is happening. Hope you feel better soon....













scoutfinch said:


> Thanks everyone for contributing your stories and experiences.  After reading through this thread, I suspect I may be developing an obstruction.  I have a section of narrowing in my small intestine and have been in a strong flare for over 2 months.  Recent symptoms which lead me to believe obstruction is developing are: feeling very full after eating only a little, bloating and distension of belly and abdomen, nausea, a feeling of inflammation and very tight squeezing in my intestines which almost feels like gas pain, strong sharp clear pains and pain that is like a lasting tight ache, nausea (but no vomiting), gurgling noises - sometimes like water glugging down a drain that's recently unplugged, sometimes like a tight wheezing.
> 
> Right now, I'm still having regular bowel movements and have not vomited at all.  Is there a timeframe after which obstruction occurs that I will experience a stoppage of BM's and/or commencement of vomiting?  Basically, is there any way I can predict when an obstruction has occurred so that I can head to the ER before it gets truly horrible?


----------



## Sybil Vane

Hi Scoutfinch! I agree, you would definitely feel really sharp awful waves of pain and wouldn't be able to go to the bathroom and would most like throw up anything you ate. I've had partial small bowel obstructions where a tiny bit is open but it hurts like hell. I've usually thrown up and had pain severe enough that I know it's time to go to the hospital. I would definitely call your GI, though. It could be you're forming a stricture. I know exactly what you mean about that tight bloated feeling and inability to eat much. It does sound like you're working towards something, so I would have the GI check you out. I'm keeping my fingers crossed that it passes quickly! 





scoutfinch said:


> Thanks everyone for contributing your stories and experiences.  After reading through this thread, I suspect I may be developing an obstruction.  I have a section of narrowing in my small intestine and have been in a strong flare for over 2 months.  Recent symptoms which lead me to believe obstruction is developing are: feeling very full after eating only a little, bloating and distension of belly and abdomen, nausea, a feeling of inflammation and very tight squeezing in my intestines which almost feels like gas pain, strong sharp clear pains and pain that is like a lasting tight ache, nausea (but no vomiting), gurgling noises - sometimes like water glugging down a drain that's recently unplugged, sometimes like a tight wheezing.
> 
> Right now, I'm still having regular bowel movements and have not vomited at all.  Is there a timeframe after which obstruction occurs that I will experience a stoppage of BM's and/or commencement of vomiting?  Basically, is there any way I can predict when an obstruction has occurred so that I can head to the ER before it gets truly horrible?


----------



## crohnsbro

I had surgery over the summer with an aweful surgeon. Had 60cm of my illium and my IC valve removed. The surgeon used a "unconventional" way to connect the intestines and they ended up healing accross the intestine creating a very effective intestinal blockage (partial). I also had C-Diff (again) so I had no trouble with BMs. In Fact I was in the bathroom about every hour on the hour. In consultation with the doctor I was told I could eat limited amounts of food. After a week I gave up on that. Every time I ate even a little bit I would be throwing it up 20 minutes later with extreme abdominal pain. I ended up going into the emergency room every 3-5 days (usually late evening or early morning) for pain. By the time I went in for a second surgery to fix the problems made by the first surgery I had gone about 2 months without eating more than a hersey's kiss at a friends birthday (I was getting nutrition through my picc line). 
So, for me an intestinal obstruction was many short bursts of pain, vomiting, and being hungry. Along with many trips to the ER.


----------



## Kellix

I had a intestinal Blockage, did not know what it was from later on I did, Crohns. I went to bed that night and didn't feel right, the next day, I just felt bad, I had eaten, but it didn't feel right and like other said, I tried to pass gas but couldn't, also to have a BM. 

So I thought if I would empty my stomach, I would feel better. Wrong move, I started throwing up and I could not stop. I took Phernagen didn't do a thing. 

So I went to the hospital, right when I was talking to the nurse, I started to throw up. I could not stop literally. 

They got me in a room and gave me Zofran and morphine. I finally felt better and the throwing up stopped. They wanted to do a Cat scan on me, so I had to drink the stuff for it. They did the cat scan, which showed I had a blockage. 

I got back to the room and was bloated and felt, I didn't need to feel this way anymore after the cat scan and threw up. I felt a lot better. 

Well the nurse saw this and decided to ambush me with 2 other nurses and put a NG tube in my stomach. That hurt like crap and I was mad as hell, I took it out. The nurses and doctors were mad at me. But I was like look, you filled my stomach with his crap and because I have a blocked intestine and I want to feel better, I throw up. 

In the end, we made a deal if I started throwing up again, they would put the NG tube again. Well I didn't throw up again. 

I was admitted to the hospital and stayed 2 days. The blockage passed. Later on the surgeon thought I had Gall stones because I had a lot of Gallstones pain. 

I picked probably the worst GI doctor I could get, the guy did a colonoscopy and I'm sorry to me even it didn't look right. He was like I'm going to ask at a conference. 

I was in pain had diarrhea all the time, thought I had dumping syndrome from the gallstones. Which they thought, I passed a gallstone and it caused the blockage. 

The GI doctor wanted to do another colonoscopy. I thought this guy was either double dipping or was just dumb, I had enough. I fired him. 

I talked to my friends that had intestine problems, and I went to the one of the best GI surgeons in Atlanta, he took one look at my colonoscopy and was like you got Crohns and its bad, it was at the ileum. I asked him, like the other GI doctor had said, do I need another colonoscopy. He was like do you want to go thru another colonoscopy? I was like No, he was like Ive been doing this for 20 years, you got Crohns. 

I had the surgery because he said, meds would not help, it was so far gone. I was 42, I'm 43 now, I never knew I had Crohns. 

The surgery, I had complications with it, where I had to go back because there was a leak after he did the surgery. 

Then I had a fistula at my operating site. In the end he had to do another surgery. In the end, I have lost. about a 14 inches of my small and large intestine and I was in the hospital a total of 27 days. I got to know the nurses there well. lol 

Today I am passing gas and its hurting bad. I am going to my new GI doctor who has been doing it for 30 years. He just did a colonoscopy on me and said everything looked good. What's scaring me today. The sharp pain I get from passing gas and all. The colonoscopy, revealed, it looked great, but the polyps that were near my ileum said I have Crohns again. 

I am going to see him today, because, he already called me and said, I was going to have to go on asacol. 

The past 2 years have been hell. I have had 4 surgeries. It all started after I had surgery on my back and I was taking Celebrex and then I had the obstruction and it started it all.


----------



## Terriernut

Buggers Kellix...sounds awful!  I have to say, you probably need more than Asacol.  Sounds like your crohns is ratcheting up a bit.  They'll need the inflammation to go down, and a maintenance med like Azathioprine to keep you from flaring and do more damage down the road.
:hug:


----------



## Kellix

Misty:

Yep its been awful, I saw him today and hes putting me on asacol and Bentyl for the pain. But I am also getting a Cat Scan done, to make sure, I'm not perforating anywhere, I passed gas today and I was happy has heck, some people would think I was nuts, but people don't realize that its like your body saying i'm working. He might be putting me on something else, the reason why the asacol, was all he said, he said on when he did the colonoscopy. he said visually the crohns was gone, but from the biopsy, he said, Microscopically he said I still have it. That's why he wanted to be proactive about it. But lately I had bronchitis a bunch and had to take a ton of anti-biotics, well that caused a bunch of the big D. And so. he recommended me take questran, I hated questran, but I had some whelcol, and I was taking it. But I have been about straining to go to the bathroom. Which may have been causing my latest problem why my doc was like quit taking that stuff and take thr asacol and bentyl, deal with the D if it happens, till my body gets back to the way it was before the anti-biotics. I got pneumonia and then had bronchitis, like about 6 times, What I meant, Its been hell. 

Thanks

Kellix


----------



## Ihurt

Oh my gosh Kellix, that sounds awful what you went through. It is really scary. I worry about myself being is so much pain all the time. I still have not had a diagnosis, but I suffer everyday. I just had a test (MRE) to see my small bowel. I dont have have the results yet. I am afraid that I am going to end up with damage. I know I am all inflammed througout my intestines, I can feel it! 

How does a doctor know if you need surgery or not?? I mean I myself would not have any surgeon cut me up unless it was like an absolute last resort. But how do you know when surgery is the only thing that will help? I am terrified of surgery as my last Gastro doc told me some horrible stories about having any type of gastric surgery. I remember I was contemplating having a lap done to see why I was having upper gut issues a few years back and he said you never want to have any abdominal surgery unless you are dying. So I will admit, it is a huge fear for me. I hope I can get answers to what is wrong with me soon... 

And yes, there are A lot of crappy doctors out there, that is for sure. Sorry you went through that with your First GI doc. That is crazy. He should have his med license pulled!


----------



## Kellix

IHURT, I just had back surgery done then 3 months later I had the obstruction, they thought, I had gallstones, also you have to remember this was from the crappy GI doc. on the 4th month. I had my gallbladder removed. Which in hindsite if I fired him and got that Gastro surgeon. I probably still would have my gallbladder. But he made me wait 6 months, also I had back pain and the big D multi times of the day. You could just tell looking at my colonoscopy, it was not right. 

I had the surgeon that removed my gallbladder look at it and he said too, you have Crohns, that and if had known would have done the surgery then. But he said, my GI surgeon was the best in the business. You just have to be at the point I don't want to keep living like this. Trust me the first GI doctor, I thought about sueing I had put multi bad reviews about him all over the place. The guy just seemed like, his father was a doctor and his father was a doctor, like he HAD to become a doctor, but you could tell he didn't like doing it. 

I mean, I had the talk about Humira, and the other new drugs, but my surgeon was like its not going to help you, and also you probably have had crohns for 20 years and just didn't know about it. I read this thing, that basically said most people find out they have crohns, in their teens to twenties, but sometimes if they have their appendix removed, that it doesn't show up till their 40s. I had my appendix removed when I was 21. 

I have other friends that have Crohns and I hear ya, I at times wonder if it was the right idea, and just trying the drugs to see, if it would have helped. because I have gone thru the ringer because of it. 

But you have to make that decision and get multi-doctors to look at it, why I wanted the 2nd opinion. And so far I have felt better, but I have had a ton of health problems since. My friend said it perfectly, you have to do it, when you can't stand it anymore. But just make sure you have the best doctor you can get. Like look at reviews. Take care


----------



## Terriernut

Yes Kellix, I too get inflammation from certain antibiotics.  Catch 22 when you get sick isnt it?  I try to inform my GP which ones do a number on me.

Hope you feel better very soon!


----------



## Ihurt

Hey Kellix,

Geez, I am sorry you had to deal with an idiot doctor like that. Unfortunately, there are a lot of idiot doctors out there, I have seen my own fair share!

That is so odd about your gallbladder surgery and getting dx with crohns afterwards. My regular primary care doctor, well her sister has crohns. She said her sister got it right after she had gallbladder surgery. I wonder if there is a connection to that.. 

This is such a scary disease. I also have other health issues as well that complicate things drastically for me. I have IC ( interstitial cystitis) which is a debilitating bladder disease. It makes me very prone to getting UTI's. I also am allergic or have really bad side effects to ALL antibitoics. Right now I have been on one (kefelx) low dose for over 5 years to prevent the UTI's I was getting. It was a life saver for me, but I am 100% certain that this antibiotic is what has caused all my gut issues. I had an MRE of my small bowel last week and am suffering for it now. I got a UTI due to the diarhea that the test caused( drinking that crap). Now I have had to up my antibiotic that I am on and it is doing a nasty number on my gut... 

Anyhow, I am sorry you went through all that, nobody should have to endure all that


----------



## canuckscouter

I had surgery to remove my colon in 1994 and starting getting bowel obstructions in roughly 2001 from scar tissue (adhesions). At first they were just really bad cramps lasting a couple of hours but progresses quickly. They often lasted 12-16 hours and were extremely painful. Sometimes I would ride it out at home but often ended up in emerge for help, mainly for the pain. Buscopan and gravol was like a magic switch. I only had an NG tube inserted once in 2009 and that seemed pretty effective too.

How painful were they? I adjust my pain scale many times over the years until my final obstruction in 2009. Prior to having UC I ripped off my big toe nail completely once. I thought that hurt pretty bad at the time. Now that wouldn't hit 1 on my scale.

At their worst I would pass out between bouts of extreme pain, only to wake up again when the next wave came.

I sometimes get cluster headaches and really bad tension headaches. Neither come close to bowel obstructions, for me at least.

I had surgery in 2009 to remove adhesions and haven't had a blockage since then. I know they will likely start again some day but for now I am pain free.


----------



## sunshinelover

I had a blockage so bad that the biggest thing that could fit through my small intestine had to have the diameter of a straw. 
As described above, one day, an excruciating amount of pain just hit me. It came in waves,  but the moments where it wasn't at its peak of pain were still extremely intolerable. 
It feels as if a knife is inside your intestine, moving around and cutting everything up inside. It is easily the worst pain I have ever experienced in my life. On a scale of 1-10, easily a 10, some days an 11.


----------



## canuckscouter

sunshinelover said:


> I had a blockage so bad that the biggest thing that could fit through my small intestine had to have the diameter of a straw.
> As described above, one day, an excruciating amount of pain just hit me. It came in waves,  but the moments where it wasn't at its peak of pain were still extremely intolerable.
> It feels as if a knife is inside your intestine, moving around and cutting everything up inside. It is easily the worst pain I have ever experienced in my life. On a scale of 1-10, easily a 10, some days an 11.


That is pretty much exactly my description. I have adjusted my pain scale down so many times ripping off my big toenail (which I have done twice) would be less than 1. It's not just about peak pain though. My last one was 42 hours at 10-8-10-8........


----------



## Jennifer

I'm bumping this thread up as the issue seems to be popping up a lot on the forum lately.


----------



## Paddy Holmes

I've had 3 blockages and I agree with all the comments above. I've had a LOT of abdominal surgery so I've got adhesions all over the place. They say That I have an adhesion working it's way into the ileum( I have an Ileostomy)so the smallest thing can cause a partial obstruction.I've been told there will be no further surgery because of the adhesions, so I cope as well as I can if things start to slow down. I try to compress the point on my stomach that has gone rock hard but I'm not sure this is a good idea. I find that following a blockage I pass a lot of anal mucus which is usually an indication that it's all over. 
Don't leave it too long, is my advice. If the pains come like contractions, get to A&E. In my experience (and I've been advised to do this), call an ambulance. They can get a line in and give you pain relief which won't be available if you present yourself at hospital. Time is of the essence in my experience.Once they have a line in they can give you morphine followed by IV paracetomol which is surprisingly helpful.


----------



## JMC

I've had two obstructions, the second in July 2011 led to the investigations that ultimately resulted in me having a right hemi-colectomy.  The obstruction occurred while I was on holiday in Portugal, but I had been unwell for a number of weeks in the run up to the holiday.  I had been suffering with the usual symptoms of a flare; fatigue, relentless diarrhoea, headaches and was concerned that things were getting worse. 

On the day the obstruction started, I had been out on a bike ride and felt very hot, sick and weak.  It was a very hot day, about 32C and I nearly fainted.  I lay down in an a cool air conditioned bedroom, drank some water and then the gripping pain began.  For the next 48 hours, I managed to eat nothing and vomited repeatedly.  Sleeping was a struggle as I was constantly tossing and turning with the pain.  On a scale from 1 to 10, I would say it was a 6 or 7, because I could get out of bed and walk to the bathroom to be sick when needed (coming round after surgery was a 9 by comparison, I shouted out in pain uncontrollably).  I was also aware that there was a major problem because all bowel noise (gurgling, etc.) stopped and despite the crampy pain, I could not pass wind.

I think the first thing I managed to eat and hold down was a banana.  The pain gradually eased off and things started moving through me again.  The following day, I flew home to London and the day after I went to the hospital and was immediately referred for an emergency MRI scan.  I never really felt right again after that until months later when I had the surgery in March 2012.


----------



## LynnMarie

Hi to all!  I'm new, just posted my story.  I can relate to the pain coming in waves, building then lessening to do it over and over again.  Its the same way with ulcers.
Does anyone have problems passing wind?  It seems when I am hurting that I have to really force the wind to pass which takes a lot strength.  I don't know how else to word this appropriately.  lol.

Thanks to everyone for helping others with your stories.  I finally feel like I can actually ask these questions and talk to those who understand.


----------



## canuckscouter

I've had trouble passing wind when I got blocked in the butt which I guess was the scar tissue simply shrunk to where I couldn't go anymore. But the blockages up higher, maybe the anastomosis site, were different and far mare painful.

I just had my butt end dilated in January and can eat more or less normally again. For a while it was chicken soup.


Sent from my Android


----------



## LynnMarie

canuckscouter,

Thanks for your reply.  You must be the type that is plagued by scar tissue, just as I am.  When I had my gall bladder out and hysterectomy, the ovaries and gall bladder were collapsed and encased with scar tissue.  I'm glad you got it taken care of and can now eat normally.  I had the barium test today and am waiting for the results.  It took much longer than I ever thought, 4 hrs, and was painful as it made its way through the small and large intestines.  It took quite sometime to go from the end of the small into the large.  My guess...scar tissue.
I've already had a section of my large bowel removed along with my appendix cause it was attached to that section.  The bowel was necrotic.
I'm wishing you the best and thanks again for the reply!
Lynn


----------



## CheerBear12

Aww get well soon Lynn :-(


----------



## canuckscouter

LynnMarie,

I wish your all the best as well. 

You are right that scar tissue from surgery was the problem. For me though it was a total blockage when it happened. I remember once when I went to emergency for relief they tried to do a barium follow through. It came up faster than it went down.

For now at least I'm free from that problem but it is predicted to return.

Sent from my Android


----------



## Jennifer

Dilating the stricture is only temporary unfortunately.


----------



## DougUte

It was the worst pain of my life by far. The pain was at a10. I had 6 ER trips in 2 months. I was afraid to eat. I don't remember having the vomiting at that time, but later I had incidents where I threw up whatever I just ate. 

Pain came in waves. It was relentless.


----------



## Amy2

This is info I will NOT be sharing with my son.  I feel for all of you!  I actually thought natural childbirth hurt A LOT.  MUCH more than my c-sections, including recovery.


----------



## lizbeth

After reading this thread I am convinced that I've had at least one partial blockage a few weeks ago, intense cramping pain that was definitely worse than labour a and I was in labour for five weeks (labour started at twenty-five weeks but delivery was held off until thirty weeks), I couldn't stop shaking and had cold sweats and couldn't stop running to the loo but it took a lot of effort to have a bowel movement. The pain did pass and then I was left feeling really drained for the or four days. Still haven't got over it though. Since then I have been having random stabbing pains in my LRQ, I never know when to expect them but when they come they take the legs from under me, I ended up on the floor the other morning cos of it.


----------



## Monkeyhugger

I've been having blockages for over a year now, but it's only very recently that I discovered that I had Crohn's disease and a pretty severe stricture due to this. I thought I was just having severe flus at first, but they started coming more and more frequently (every two weeks or so at the peak, before I started on medication). It starts out as pain right below the V in my ribcage, then moves lower, and I begin to have very severe pressure and pain for about 10 seconds or so, followed by a large gurgle and then partial relief. This cycle starts back up after about a minute and this culminates in vomiting that can last up to a day and a half and turns green once I have thrown up everything I have ever eaten . During this time I can't even drink water, and on the rare occasions I can take medication without throwing it up right away, there is no cure for the pain and vomiting.
Once I have diarrhea I know that this cycle is starting to wind down. Never thought I'd be looking forward to diarrhea.

I started Prednisone (30 mg at first tapering off) which does not seem to have helped my stricture, I had an MRI recently and my doctor says that it is 4 cm long but almost completely closed, I am back on a higher dose of Prednisone (40 mg) as well as Imuran... If this doesn't work then ballon dillation will be the next step, and if that fails, resection which I am trying to avoid at all costs. 

I'ver never been to the ER but I think that maybe next time I have a blockage I will.

Anyone found anything to take away (or even dull) the pain?


----------



## Jennifer

Hi Monkeyhugger.  When I dealt with mine I went to the ER and was given pain meds there along with much needed fluids. Other than that you could try a heating pad and warm baths (assuming you don't want actual pain medication) along with eating smaller meals more frequently throughout the day (soft foods and avoid fiber) and you could also try a liquid diet as well. Let your doctor know that you're going to go on a liquid diet if you do and make sure that you get plenty of nutrients. There are supplement drinks out there yet you can also make your own soups and drink the broth.


----------



## gemmafer

For me I was blocked up a lot. Very constipated. I could go over a month at a time without going to the toilet and it just made me miserable because I felt bloated a lot. The worst part of it all was the pain for sure. It was agony and this is what I remember most vividly before I had surgery. I was admitted to hospital on a few occasions just to be given weak laxatives and morphine for the pain. I had fevers a lot during the time I had obstruction, constantly pooled in sweat at night which also made me miserable because it smelled sickly.


----------



## emichels

I was wondering if anyone that had the partial obstructions, had blood test done. If so, did they show that you were having an obstruction. For the past yr and a half, I have been hurting so bad, I've lost weight and I cant eat anything because as soon as I have a couple of bites, my stomach is killing me. I talked to my GI and he told me that since my blood test is showing NO signs that my crohns is active, then he just can sugest gas x, to help me pass gas. My stomach is bloated and it hurts so much. I am so weak because I'm not eating....any help would be great
Thanks
Edna


----------



## mere282

When I had a partial obstruction. My white count was high
And some other minor things just barely out of range.
The pain was so bad I couldn't stand up straight and everything went through me. I don't recall if I was bloated. Just the pain and my blood pressure was low.
If you feel that bad go to the er. That's what I had
To do . I felt like I was gonna pass out and was home alone
With my kids. Hubby made me go. Feel better listen to your body


----------



## DJW

I hate to say but I've had about 30 of them. Off the chart pain. I don't mess around anymore. Off to the ER for didaudid and a potent antinausea medication. Most cleared but a number have required surgery.


----------



## Ribo

emichels said:


> I was wondering if anyone that had the partial obstructions, had blood test done. If so, did they show that you were having an obstruction. For the past yr and a half, I have been hurting so bad, I've lost weight and I cant eat anything because as soon as I have a couple of bites, my stomach is killing me. I talked to my GI and he told me that since my blood test is showing NO signs that my crohns is active, then he just can sugest gas x, to help me pass gas. My stomach is bloated and it hurts so much. I am so weak because I'm not eating....any help would be great
> Thanks
> Edna


My blood work doesn't indicate an obstruction, not sure how it would do that to be honest. The only abnormality in my blood has been some potassium imbalances if I recall correctly. 

All of my obstructions have been identified by CT scan. Some with, most without contrast. The symptoms I have are pretty consistent: reduced bowel movements / constipation, bloating, pain that has a steady undertone but also comes in waves of increasing severity - at the worst, it leaves me literally in a fetal position trying to find a way to relieve the pain spikes. I'm often dehydrated as I can't drink anything and keep it down. Plenty of nausea, often dry heaves and vomiting. The pain generally radiates out around the entire abdomen as things get worse, and into the back. Finally, hypoactive bowel sounds. 

That's a complete obstruction. I've had that four times, all have cleared with bowel rest, pain and nausea control, zero food intake, and bed rest. 

I've also had what I and the GI suspect is numerous and to an extent ongoing partial obstructions. Similar symptoms but less severe (though still quite high) pain levels. These last for a few hours and then suddenly, I will hear and feel a loud gurgling and literally in minutes I feel the pain start to subside as things start moving again. 

I'm in the same place as a previous poster - when the pain reaches a certain level I just head to the ER. I just know what pain I can manage to either bear until it subsides or manage with Percocet, and if it's getting beyond that, I head to the hospital for them to get ahead of the pain curve. It's not worth the suffering to me. Luckily (?) at this point my history is well established and I don't get treated like an addict when I show up with general abdominal pain as my Main symptom.


----------



## emichels

Thank you everyone for replying....I've had crohn's for 8 yrs and 5 of those yrs has been in remssion. These last few yrs has been very painful, and my doctor and my family just isn't taking me serious, when I am telling them " I am hurting". Blood test through these last 3 yrs has been up and down. One time my liver enzymes are off the chart, get that taken care of, then my wbc is high, then to low....then everything is ok, but I'm still losing weight, I'm down to 95 pounds. If I eat, I pay the consequences for it. I have been drinking ensure but that gets exspensive and that is also causing me pain. I have been on Remicade for the past 8 yrs but it seems like it's just not working anymore. My gi suggested that I think about Humira, but when I finally decided on switching, he said it was just a lateral drug from Remicade and it probably wont work either. Why get my hopes up, just to knock them down? I've had to cut my hrs in half at work because of this pain. Now I am going to try and get disability cause the job that I do is just too much for my stomach. I do alot of twisting, bending, lifting, and climbing. I don't want to because I really like my job, and I don't, nor have I ever wanted to be dependent on any kind of assistance, but I don't know what else to do. Just getting so frustrated with this Crohn's crap....sorry.


----------



## GsUpChrohnsDown

let me ask you guys something. i was in extreme pain this entire week (pain around my entire waist line). i admit, i ate like a pig last weekend. ate like two entire gallons of ice cream, some burger king, etc. i finally was able to get two nice #2's in this morning and now i feel great. does this sound like the blockage/obstruction you speak of?


----------



## Jennifer

With a full obstruction you would not be able to pass stool. You can pass some stool with a partial obstruction though. If you didn't have a bowel movement until recently then you may have had constipation and at most a partial blockage but I'm not sure. Constipation can be very painful as well. If possible I'd suggest avoiding all of those items in excess.


----------



## canuckscouter

If you didn't vomit everything down to your toenails it wasn't like what I experienced.  But for sure constipation can be painful. Take Jennifer's advice and avoid some of that pain.


----------



## lizbeth

GsUpCrohn'sDown said:


> let me ask you guys something. i was in extreme pain this entire week (pain around my entire waist line). i admit, i ate like a pig last weekend. ate like two entire gallons of ice cream, some burger king, etc. i finally was able to get two nice #2's in this morning and now i feel great. does this sound like the blockage/obstruction you speak of?


If just had the experience of extreme constipation (although didn't know it at the time) I spent a night in casualty having it diagnosed. What I don't really understand about it though is that I was still having a few bms a day, admittedly firmer than normal for me. The pain was intense!! I'm on mst for pain and co-codamol for break through pain and I was still in agony, I was sure it was something more than constipation.  I can understand how sore you must have been and glad it has improved for you .


----------



## raj

Pain built gradually all afternoon until I passed out when I got home. Woke up called telehealth and they basically asked wtf I'm doing.  Go to the hospital!


----------



## cleuger

Will a liquid diet help with obstructions? or am I clueless? providing its not scar tissue causing the blockage. How long does it take to have scar tissue weeks. months, years at what rate does it develop to the point it could cause a blockage?


----------



## Ribo

cleuger said:


> Will a liquid diet help with obstructions? or am I clueless? providing its not scar tissue causing the blockage. How long does it take to have scar tissue weeks. months, years at what rate does it develop to the point it could cause a blockage?


I've had six SBOs in the past eighteen months, each resulting in a hospital stay. The most recent was about five weeks ago. 

Treatment in each case was simply pain control and resting the bowel until the obstruction cleared. In two cases this involved total bowel rest that started with an NG tube for a few days. On the other four, I was simply NPO for a few days treated with IV fluids supplemented with glucose via the drip. The first couple of times I also got flagyl and cipro as an infection was initially suspected. 

From no eating you graduate to clear liquids, then full liquids, then solids. Assuming you tolerate the shifts, you discharge and go home. 

My GI has had me off and on low residue diets. The idea here is you're putting less strain on the bowel and it reduces the chances of additional obstruction. You might be well served to ask about that approach. 

To be clear, though, if you're having pain that is severe enough to suspect an obstruction, any vomiting or dry heaves, lack of BMs, you shouldn't be trying a liquid diet and hoping for the best. Obstructions can be serious business, and even life threatening, so be sure to seek appropriate medical attention. 

As I say, I've had them multiple times, and they've become frighteningly routine for me at this point, but if I get to the point where I suspect one, I'm immediately on the phone to my GI or failing that, off to the ER. Don't take a chance.


----------



## cleuger

Ribo said:


> I've had six SBOs in the past eighteen months, each resulting in a hospital stay. The most recent was about five weeks ago.
> 
> Treatment in each case was simply pain control and resting the bowel until the obstruction cleared. In two cases this involved total bowel rest that started with an NG tube for a few days. On the other four, I was simply NPO for a few days treated with IV fluids supplemented with glucose via the drip. The first couple of times I also got flagyl and cipro as an infection was initially suspected.
> 
> From no eating you graduate to clear liquids, then full liquids, then solids. Assuming you tolerate the shifts, you discharge and go home.
> 
> My GI has had me off and on low residue diets. The idea here is you're putting less strain on the bowel and it reduces the chances of additional obstruction. You might be well served to ask about that approach.
> 
> To be clear, though, if you're having pain that is severe enough to suspect an obstruction, any vomiting or dry heaves, lack of BMs, you shouldn't be trying a liquid diet and hoping for the best. Obstructions can be serious business, and even life threatening, so be sure to seek appropriate medical attention.
> 
> As I say, I've had them multiple times, and they've become frighteningly routine for me at this point, but if I get to the point where I suspect one, I'm immediately on the phone to my GI or failing that, off to the ER. Don't take a chance.


I don't think I have an obstruction by reading this thread. I have a very low pain tolerance I would most definitely know. I'm trying to educate myself Doctors don't really explain things in layman terms. I know I have scar tissue I have no idea if its blocking anything, according to what I'm reading I would know if it was. I do have pain on my left side not like what this thread describes by any means mostly discomfort then goes away I don't always have it,  like now I have no pain. By late this afternoon I may experience discomfort on my left side its a hit or miss.  I just want to know what I'm in store for. I'm am literately scarred out of my wits over this crap finding I worry myself senseless. 
I also do have 2 small strictures not sure if they were inflammation for scar tissue.

Thanks for you response wasn't trying to thread hijack. Sorry to the original poster


----------



## Rebreb

Wow.....from reading all these posts I feel like I'm not alone...finally. .  I think I must have a partial obstruction. Pressure like an elephant is standing below my breasts, diarrheah, vomiting, back pain, hard bloated stomach that is so tender you can't even touch it, sweating, aches and pains all over my whole body. I can't even rate the pain on the scale because it is higher than 10. Can't eat a grain of rice, or keep down a sip of water.
I have finally been dx with Crohn's last week, but my follow up appt isn't until October so I don't know how bad it is. I was in remission when I had my colonoscopy.
Question.....would a stricture or obstruction (not sure if it is the same thing)
show up in my colonoscopy? Or would I need a cat scan or an MRI to see that kind of thing? And do they go away completely when you are not having a flare up?


----------



## canuckscouter

Rebreb said:


> Wow.....from reading all these posts I feel like I'm not alone...finally. .  I think I must have a partial obstruction. Pressure like an elephant is standing below my breasts, diarrheah, vomiting, back pain, hard bloated stomach that is so tender you can't even touch it, sweating, aches and pains all over my whole body. I can't even rate the pain on the scale because it is higher than 10. Can't eat a grain of rice, or keep down a sip of water.
> I have finally been dx with Crohn's last week, but my follow up appt isn't until October so I don't know how bad it is. I was in remission when I had my colonoscopy.
> Question.....would a stricture or obstruction (not sure if it is the same thing)
> show up in my colonoscopy? Or would I need a cat scan or an MRI to see that kind of thing? And do they go away completely when you are not having a flare up?


With those symptoms I would suggest getting more immediate medical treatment. At a minimum I would call your GI/GP for advice.


----------



## Ribo

Rebreb said:


> Wow.....from reading all these posts I feel like I'm not alone...finally. .  I think I must have a partial obstruction. Pressure like an elephant is standing below my breasts, diarrheah, vomiting, back pain, hard bloated stomach that is so tender you can't even touch it, sweating, aches and pains all over my whole body. I can't even rate the pain on the scale because it is higher than 10. Can't eat a grain of rice, or keep down a sip of water.
> I have finally been dx with Crohn's last week, but my follow up appt isn't until October so I don't know how bad it is. I was in remission when I had my colonoscopy.
> Question.....would a stricture or obstruction (not sure if it is the same thing)
> show up in my colonoscopy? Or would I need a cat scan or an MRI to see that kind of thing? And do they go away completely when you are not having a flare up?


That sounds like a full, not a partial, obstruction. I'd be at the ER already if it were me.


----------



## Rebreb

I'm not having a flare up right now, thank god  
When l do flare up, 3 weeks of prednisone and pain medication will put me in remission. Every time I have a flare, the prednisone is less effective and I need to be on it longer. 
After my colonoscopy last week I was prescribed asacol, 1600mg twice a day
I've had flare ups off and on since 2005. The symptoms I described previously used to last 2-3 hours and then they would go away for an hour. But the last flare up was continuous torture that would never let up. So it is getting worse each time. One day I was keeping track of how many times I went to the bathroom and I stopped at 36. And after a day of vomiting, because the pressure is so bad, I would throw up bile all the time. And the taste in my mouth was so disgusting and I couldn't get rid of it no matter how much I brushed my teeth. And the body aches and pains were a new thing with the last flare up. I couldn't even stand up I was so weak and sore. I ended up putting a blanket in the bathroom and just stayed there. My boyfriend had to actually bathe me because I couldn't even get the bit of energy to do that. My mom came came over and took me directly to the hospital. I cant believe I waited 3 days to go. It's was frustrating all the time because my previous scope was only down the throat and I had been dx with acid reflux. So when I would go to the hospital they would look at my records and treat me for that and they did not give me pain meds until I actually got to the point where I couldn't breathe. They said I was having a panic attack. I hate hospitals. All the drug seekers ruin it for people that actually need help with real pain. But now that I have a dx, next time I have to go, at least I will be taken more seriously. Sorry to ramble on again. I get all worked up when I think about that visit to the hospital.


----------



## Crohn's gal since 1989

Rebreb said:


> Wow.....from reading all these posts I feel like I'm not alone...finally. .  I think I must have a partial obstruction. Pressure like an elephant is standing below my breasts, diarrheah, vomiting, back pain, hard bloated stomach that is so tender you can't even touch it, sweating, aches and pains all over my whole body. I can't even rate the pain on the scale because it is higher than 10. Can't eat a grain of rice, or keep down a sip of water.
> I have finally been dx with Crohn's last week, but my follow up appt isn't until October so I don't know how bad it is. I was in remission when I had my colonoscopy.
> Question.....would a stricture or obstruction (not sure if it is the same thing)
> show up in my colonoscopy? Or would I need a cat scan or an MRI to see that kind of thing? And do they go away completely when you are not having a flare up?



GO TO THE HOSPITAL!!!  You sound like my full obstruction.:eek2:


----------



## Grant

Rebreb said:


> Wow.....from reading all these posts I feel like I'm not alone...finally. .  I think I must have a partial obstruction. Pressure like an elephant is standing below my breasts, diarrheah, vomiting, back pain, hard bloated stomach that is so tender you can't even touch it, sweating, aches and pains all over my whole body. I can't even rate the pain on the scale because it is higher than 10. Can't eat a grain of rice, or keep down a sip of water.
> I have finally been dx with Crohn's last week, but my follow up appt isn't until October so I don't know how bad it is. I was in remission when I had my colonoscopy.
> Question.....would a stricture or obstruction (not sure if it is the same thing)
> show up in my colonoscopy? Or would I need a cat scan or an MRI to see that kind of thing? And do they go away completely when you are not having a flare up?


Hi Rebreb, a stricture is a narrowing of the bowel that can cause an obstruction, a stricture can be seen during a Colonoscopy & an Obstruction sometimes even a simple x ray can show it up.
Please get yourself checked out as others have said, obstructions can be life threatening.
Rgds
Grant


----------



## megngeiger

For me it feels like agony after eating. Followed by your stomach doing somersaults and then enviably throwing up. Might i add, no amount of vomit EVER feels like its enough. Or even sometimes hitting the nausea lottery and having it come out both ends. now that youre exhausted, you sleep for a long time to which you wake up in excruciating pain. i also ran fevers at night time. my bf at the time said it was like sleeping next to a furnace. 
my pain was due to obstruction AND perforated appendix and of course inflammation. All you can do upon waking is cry. good luck getting out of bed for the next two hours. i would feel fine for several hours after this routine and then it would all kick in again around 8 or 9pm. (sometimes i would pass the foulest of gas, EVER) i was a smoker and dramatically decreased because smoking made me feel sick. i also enjoyed drinking and when i drank i felt sick. Quality of life drastically diminishes. 

wlep i hope this helps someone who feels the same way i did. youre defiantly not alone. just sucks that sometimes it gets worse before it gets better


----------



## windy

cleuger said:


> Will a liquid diet help with obstructions? or am I clueless? providing its not scar tissue causing the blockage. How long does it take to have scar tissue weeks. months, years at what rate does it develop to the point it could cause a blockage?




I know what your going through,I feel 'battY" quite often. I have had blockage for almost 4 years,not total blockage (obviously) but I have  to use several enemas to remove my stool. I have refused to get a colostomy  bag (but I probably should ). I also wondered if one could live on just liquids ,but never do that,getting surgery would beat starving slowly to death. my father died from starvation. Insure clear is good for a few days,but not more than 3 ,we must eat something.Your in my prayers . Keep trying food elimination (Start with one food ,see how it goes,add another and so on,that way you can tell which food disagrees .I have suffered off and on for most of my life with bowel problems (but had a 10 yr remission  ,thank God ). But back on the roll-a-coaster  now !  You may be one of the lucky ones and your bowel problem will go in remission and never return .:hug:


----------



## cleuger

windy said:


> I know what your going through,I feel 'battY" quite often. I have had blockage for almost 4 years,not total blockage (obviously) but I have  to use several enemas to remove my stool. I have refused to get a colostomy  bag (but I probably should ). I also wondered if one could live on just liquids ,but never do that,getting surgery would beat starving slowly to death. my father died from starvation. Insure clear is good for a few days,but not more than 3 ,we must eat something.Your in my prayers . Keep trying food elimination (Start with one food ,see how it goes,add another and so on,that way you can tell which food disagrees .I have suffered off and on for most of my life with bowel problems (but had a 10 yr remission  ,thank God ). But back on the roll-a-coaster  now !  You may be one of the lucky ones and your bowel problem will go in remission and never return .:hug:


Thank you.No I will probably never know true remission Ive never felt just right. It seems there is always something off with me. Its bizarre when I took my Cimzia shot last week the cramp pain went away after a day but will probably return in a another week. I'm also taking 20 mg of pred which I'm slowly coming off of. Now I'm eating normal have a little bit of an appetite but still drinking the ensure for extra nutrition as I do not absorb what I need. I'm not having trouble going to the bathroom at all as a matter of fact Ive noticed when its gets time for my shot my bathroom trips increase. Can I just say I am so frgin sick of this as I am sure all of you are. I don't know what keeps you going.
Thanks for your response


----------



## Jennifer

@ Rebreb - With symptoms like that you should go to the hospital as others have mentioned. Once there they'll likely do a CT scan and see if you have an obstruction or partial. If you do chances are they will keep you there and decide if you need emergency surgery or if it will clear up on its own.

I had an obstruction in June this year at my resection site. Both scar tissue from the resection and active inflammation caused the obstruction. My symptoms were the same as the ones you described. I tried to sleep through the night and hope it would go away but I hardly slept and was still in pain in the morning so I told my mom about it and she took me to the ER where I was hospitalized for 3 days. Each day they did a regular x-ray after the CT scan to make sure there wasn't a mass (a regular x-ray will show if there's a mass yet a CT scan will show more detail). 

Less than two months prior to this I had a small bowel follow through that showed nothing at all (scopes done in January showed nothing). I started having minor symptoms one week prior to the obstruction. Point being that all of this can happen rather quickly so no matter what tests you've had done or when, if you have extreme symptoms like the ones you described then you need to take immediate action and go to the hospital.


----------



## Mel78

Hi everyone,

     I had a small bowel obstruction leading to a resection of my TI/cecum on 8/10.  I was readmitted 4 days after discharge with an ileus.  I am out now and am having a very difficult time with fatigue.  I was wondering if anyone else has had this problem and how long i should expect it to last.



thanks,
Mel


----------



## Ribo

Mel78 said:


> Hi everyone,
> 
> I had a small bowel obstruction leading to a resection of my TI/cecum on 8/10.  I was readmitted 4 days after discharge with an ileus.  I am out now and am having a very difficult time with fatigue.  I was wondering if anyone else has had this problem and how long i should expect it to last.
> 
> 
> 
> thanks,
> Mel


It's taken me two- three weeks in general to get back to feeling mostly normal after even a short hospital stay with any obstructions. After my last stay, a week in the hospital, it feels like it's taking forever t get my energy back, but I'm taking such a huge mix of meds it's possible that is a factor as well. 

I think it's the norm. You just have to give the body time to heal while at the same time working in some activity to build up muscle again. You lose some muscle mass just laying around, not t mention the lack of nutritional intake when obstructed and resting the bowel.


----------



## DJW

Hi Mel. If I'm lucky enough to have mine clear up in the ER (8-10 hr) I'm laid out for 7-10 days. It takes time to recover.


----------



## Irish86

All you need to know is it SUCKS!!!!!!!!!!!!!!! Pain, Vomit,no eats and iv. Had twice sucks feels like someone has a hold of your insides.


----------



## trebor-HI

I'm a 57 year old guy.  I experience 3-4 episodes a year of vomiting.  This has been going on for about 10 years.  I finally went to a GI and had a colonoscopy that revealed crohn's at the ileocecal valve.  Never had problems with diarrhea, just the vomiting.  

My last episode, about two months ago, I went to the emergency room.  The ER did a CT of my abdomen and concluded small bowel obstruction.  The CT showed a small bowel fecal sign, dilation of ileum and jejunum loops and wall thickening in the terminal ileum.  

No resections yet, knock on wood.  Suppose to start Humira soon to hopefully get under control.  

My vomit episodes are 6-12 hour ordeals.  Starts off with nausea, progresses to vomiting and sometimes dry heaving.  Finally I fall asleep and wake up the next morning feeling better.  I gather all the vomit episodes I've experienced over the years were small bowel obstructions.


----------



## Ckoenig

Has anyone's obstruction began as more air filled discomfort!? And I guess what do you do at that stage?. I had stomach pain last night pretty bad at times, am able to pass gas, but stool only in small increments and rarely. I feel full to the point of discomfort but hungry bec I haven't eaten much. I'm relatively ok but feel full of air like pains up into my chest cavity. It also feel like when I'm on the toilet that I'm having contractions and my stomach has a dropping sensation ? 
 it's no fun. I guess I just don't know when to seek care and also I saw my GI two days ago and was fine. Go figure. I guess I feel stupid having just felt ok and now not.
The thing is I'm functioning currently just very uncomfortable an trying to be at work. 

Oh and I've been nauseated off and on for two days now. But no throwing up.


----------



## DJW

Hi. I had a partial blockage last summer. Lots of gas, no appetite, not much pain, and a bit of vomiting. Keep an eye on it. Mine went bad fast. Thankfully I was in hospital when it perforated. Still required emergency surgery.


----------



## Crohn's gal since 1989

I'm currently in the hospital.  I came in because of an obstruction.  I had no BMs Sunday, a BM Monday morning @ 5:30am, felt fine. Had a bagel and tea for breakfast, and started getting mild stomach pains @7:00am.  I figured I just needed to poo more.  By 9:30am I told my boss I needed to go home.  I toughed it out till 10:15am then I left work and on the 20 minute drive home the pain was so bad that I called my Dad and asked him to come pick me up and take me to the hospital.  I never committed this time but the pain made me extremely nauseous.


----------



## Rebreb

Omg. I hope you feel better soon. Hugs


----------



## Crohn's gal since 1989

Rebreb said:


> Omg. I hope you feel better soon. Hugs


Thanks!  The obstruction is all cleared up but since this is my 3rd since May the doctors have decided to do my resection surgery now instead of Oct/Nov.   so I'm well, now just waiting around till the docs can get OR time to do my surgery.


----------



## Rebreb

I'm sure waiting is the worst part. Thank god for cell phones to keep us occupied


----------



## Crohn's gal since 1989

Amen!


----------



## Justanothercp

It's amazing how we all experience such different symptoms with strictures/obstructions. I have such horrible pain with mine. The really frustrating part for me is when I have an obstruction and I can't think of anything I've eaten that might have caused it. Usually, I can think back and know the culprit. 
Also, for me, I need to pay more attention to some of the early warning signs. I think often if I catch it early and go on a VERY low residue diet and restrict intake overall for a few days I can prevent a really bad episode.


----------



## Jennifer

Ckoenig, isn't that always the way? You just saw the doctor and felt fine then all hell breaks loose. Best thing to do is call your doctor and let them be aware of your current situation and as mentioned go to the ER/hospital if symptoms get too severe.


----------



## AJC - Australia

i have only had 3 of them....every time the pain comes in waves.


----------



## Jennifer

I think I'm dealing with a partial one tonight. In some pain but not a lot. Having a lot of bloating and feeling full. When I have a bowel movement there's not much stool and while I'm going I feel extremely nauseous and even started getting light headed. If things get worse then I'll go to the ER but I'm hoping this will pass before it gets to that. I'm so drained and just not feeling well tonight.


----------



## Jennifer

My abdomen started burning last night like it did before the last time I went in for an obstruction but this morning all the symptoms I was having have gone away thankfully. I'm going to try and get my blood work done today. Strictures suck.


----------



## Ribo

Jennifer said:


> My abdomen started burning last night like it did before the last time I went in for an obstruction but this morning all the symptoms I was having have gone away thankfully. I'm going to try and get my blood work done today. Strictures suck.


Hang in there, but if you're not having nausea/vomiting/extreme pain, maybe it was a partial. My GI has speculated that I was basically getting partially obstructed repeatedly but that they would sort of dynamically clear after three or four hours, only to repeat the process anywhere from a few hours to a few days / weeks later. Maybe it's something like that?

The good news is it sounds like it cleared, so that's great to hear!


----------



## Jennifer

Yep that's pretty much what it is Ribo. I had a full one back in June but it cleared up with IV steroids while in the hospital for a few days. Its inflammation at my resection site (resection from 14 years ago) so I've got scar tissue and inflammation in the same spot. Fun. 

After I do my blood work today I'll call my GI and let him know about it at least so he can also keep track of how often this is happening.


----------



## PVail

Jennifer said:


> I think I'm dealing with a partial one tonight. In some pain but not a lot. Having a lot of bloating and feeling full. When I have a bowel movement there's not much stool and while I'm going I feel extremely nauseous and even started getting light headed. If things get worse then I'll go to the ER but I'm hoping this will pass before it gets to that. I'm so drained and just not feeling well tonight.


Have this sensation for over a week now. Pretty tired of it and I know it will probably calm down eventually . Waking up with pain and feeling very sick in the night . Seeing stars so i must be low in blood or something like that . 
Never ending story sometimes .
Hope you feel better soon and dont leave it too long to get help .
Peter.:rof:


----------



## Jennifer

PVail said:


> Have this sensation for over a week now. Pretty tired of it and I know it will probably calm down eventually . Waking up with pain and feeling very sick in the night . Seeing stars so i must be low in blood or something like that .
> Never ending story sometimes .
> Hope you feel better soon and dont leave it too long to get help .
> Peter.:rof:


I hope you get yours sorted as well. *HUGS*

I had an MRE on Wednesday so I'll be going over the results with my GI soon to see what the next step is.


----------



## lizbeth

Has anyone ever felt like they were having a SBO only to be told it's 'just' constipation?  This has happened to me now on a number of occasions plus my GI is now saying I don't have IBD but instead it's IBS.  I feel a bit confused?


----------



## Grant

lizbeth said:


> Has anyone ever felt like they were having a SBO only to be told it's 'just' constipation?  This has happened to me now on a number of occasions plus my GI is now saying I don't have IBD but instead it's IBS.  I feel a bit confused?


No wonder you're confused. When were you originally diagnosed with IBD & was it after a colonoscopy if so I'd be throwing that straight back @ him,
As for comparing an obstruction with constipation-well words fail me. Do people with constipation suffer from projectile vomiting & pain so bad its off the scale.

lizbeth I think you should think about changing Specialists tbh, especially if it was him/her who originally diagnosed you with IBD.
Grant


----------



## Jennifer

I agree with Grant lizbeth. May be time for a new doctor. Have you had any tests done recently that look at your small bowel?


----------



## Niks

Lizbeth - my daughter has had so many diagnosis too.  She has chronic pain, projectile vomiting.   she has been admitted to hospital on the plus side of 15 times over the last year.  Her latest diagnosis is IBS and constipation!  

I don't buy it either.  Keep fighting!


----------



## lizbeth

Thanks for the replies. 

Grant it was 10 months ago and it was indeed after colonoscopy, a ct scan and also with my symptoms, it was also a different Dr than my GI, unfortunately I don't have much option about who I see with it being NHS, I have an appointment on the 7th so am compiling a list of questions etc. and am going to try to resolve this. Like Niks said I'm going to keep fighting .

Jen I had a pill cam done that came back clear, that's why they've changed diagnosis.  I'm convinced if is most definitely not IBS, I mean I've just had to get up for a painful bm at 1am and am still up with cramps especially in the LRQ, I don't think that sounds like IBS.


----------



## Jennifer

Inflammation can come on so fast though lizbeth. I had a small bowel follow through this year that was completely clear and less than two months later I was in the hospital with a blockage (showed in a CT scan). 

Are you on meds currently? By taking away the diagnosis they'll change the treatment and you could get worse. D:


----------



## lizbeth

I'm just on pentasa and omeprazole plus multivitamin and calcium and serious pain relief, before the pill cam they had been considering immunosuppressants or surgery, now I fear I will get nothing and continue to get worse, I'm finding it difficult enough to manage as it is .


----------



## Grant

lizbeth, you can go to any hospital within the NHS. It certainly doesn't have to be the one you visit now. You'd have to explain to your GP so he can refer you to a different Hospital. Obviously I dont know what the situation is where you are but you have options to change.
The thing is that to be diagnosed with CD or UC I assumed, maybe wrongly, that they took biopsys that confirmed the condition. If thats the case & thats what they did originally then there is no way they can suddenly say no its IBS. Sadly although we may get remissions that in some cases last for years Crohns as it stands is for life.
Rgds
Grant


----------



## lizbeth

Grant said:


> lizbeth, you can go to any hospital within the NHS. It certainly doesn't have to be the one you visit now. You'd have to explain to your GP so he can refer you to a different Hospital. Obviously I dont know what the situation is where you are but you have options to change.
> The thing is that to be diagnosed with CD or UC I assumed, maybe wrongly, that they took biopsys that confirmed the condition. If thats the case & thats what they did originally then there is no way they can suddenly say no its IBS. Sadly although we may get remissions that in some cases last for years Crohns as it stands is for life.
> Rgds
> Grant


Thanks Grant, I have considered moving to a hospital where the GI has an interest in diabetes and was looking after me at my local diabetic clinic before he moved to gastro fulltime, I'm going to wait and see what happens at the appointment next week and then think about it.

I did have biopsies taken but they came back as non-specific , they did see inflammation and ulceration too and the ct showed a thickening of the terminal ileum.  I just don't understand the sudden change when my symptoms never go away and have been getting worse these last couple of months.


----------



## Jison0612

Hey I had pains in my upper abdoman so bad a few weeks ago that I had to go to the er and get several shots of pain meds to dull it every 10mins!!! I was in agony!!!!! After several test the ct scan showed inflamation and gas from my Crohn's of course with no stricture or obstruction just inflamation I couldn't imagine a obstruction if inflamation was that painful wow!!!!! Since being on entocort 9mg daily it's seemed to have straightened out I've got my appitite back and not as much pressure but wow was that intense!!!!!!!


----------



## michelle56

I'm currently in the hospital for my intestinal blockage. For me it starts with bloating. After a few hours of that. The vomiting starts along with the waves of pain. I call then my crohn's labor pains lol lol. The stronger the pain the more violent the vomiting. There is no sound that comes from my stomach. Just a lot of localized pain. For me it is always in one basic area, my original surgery site.


----------



## Mel78

Feeling very frustrated.  I had a small bowel obstruction requiring a bowel resection on August 10th of this year.  I was readmitted for an ileum and then an ER trip for a possible GI bleed.  I had to have a colonoscopy today.  It has been less then two months from my surgery and I already have another ulcer at the anastomosis site.  Now they are saying that my PPD blood work has come back positive (although my PPD in May was negative- get tested for work every year).  Now they are saying that this may change my course of treatment because of the nature of the immunosuppressants.  I am so concerned that this will mean more surgery sooner rather then later.  Does anyone have any thoughts or advice for me.  I have been having trouble since June (gallbladder removal), then SBO with resection Aug and scope today.  Just starting to get down.  I have been having significant pain since the second surgery and increasing anxiety.  I am 35 with two kids and a wonderful husband but am just having a hard time climbing above all of this...


----------



## RachaelV123

I am having symptoms that are new to me and am not sure if I should be worried.  I was released from the hospital have a bad flare on the 17th of September. I was given prednisone and Apriso, but refused to take the prednisone because of how bad it made me feel in the past. Anyway, for the past week I've had bad bloating off and on, mild abdomen pain, and I throw up after I eat. I know I am going to get sick because I start to cough and shortly after the coughing I vomit. I also feel like I have heart burn.  I was diagnosed with Crohns in 2009 and it's located in the ileum. I know asking for medical advice is out but if this sounds familiar to anyone please let me know. I don't have a fever but I notice my face feels real flushed periodically and I have had a mild headache off and on as well.


----------



## Mel78

Rachael, 
I'm so sorry that you are feeling so badly.  I think we have all been there.  When was the last time you had any imaging?  THe fact that you are throwing up says to me that you might have a partial obstruction or maybe a stricture (not a doctor here).  Have you spoken to your GI doc? Does she or he know that you aren't taking the prednisone?  Maybe there is another med he or she can give you instead of the prednisone.  My crohn's that was just resected was also located in the ileum.  I think the first thing that you need to do is have a conversation with your doctor.  They need to know what is going on if they're going to be able to help you (something I have only come to accept recently).  I know that I didn't really give you many answers but I truly hope you talk to the doctor and begin to feel better.


----------



## HorseLover!!

I'm also so having symptoms like the worst pain I have ever had whilst in the middle of a flare up, pain, feeling sick then vomiting, not be able to stand up straight and my doctor has just told me "it's only constipation you will get over it" :ybatty:


----------



## Grant

HorseLover11, was that your GP or Specialist?? TBH either way its immaterial, if whoever it is is wrong you could potentially suffer with a life threatening condition. IMO you need to get yourself to A&E quickly & let them check you over, they usually do an abdominal x ray which for me anyway always showed my obstructions.
Take Care
Grant


----------



## lizbeth

HorseLover!! said:


> I'm also so having symptoms like the worst pain I have ever had whilst in the middle of a flare up, pain, feeling sick then vomiting, not be able to stand up straight and my doctor has just told me "it's only constipation you will get over it" :ybatty:


Did you manage to get checked out since the last time you were bad or is this still the same flare when you weren't able to get checked?  If so I agree with Grant, it's time for casualty.  Hope you feel better soon and everyone else too. :ghug:


----------



## HorseLover!!

lizbeth said:


> Did you manage to get checked out since the last time you were bad or is this still the same flare when you weren't able to get checked?  If so I agree with Grant, it's time for casualty.  Hope you feel better soon and everyone else too. :ghug:


I did manage to get checked but he thinks it's only constipation, I don't think so because it's been getting worse and it is still the same flare that's been going on for the past 6 months now- my doctor doesn't believe me as usual :ybatty:


----------



## HorseLover!!

Grant said:


> HorseLover11, was that your GP or Specialist?? TBH either way its immaterial, if whoever it is is wrong you could potentially suffer with a life threatening condition. IMO you need to get yourself to A&E quickly & let them check you over, they usually do an abdominal x ray which for me anyway always showed my obstructions.
> Take Care
> Grant


It was my specialist he's an idiot anyway :lol: I have had an x-ray and he is very adamant that its constipation, but when I'm constipated I put on weight and I haven't I've lost weight instead I've gone from being 56kg to 51kg which to me isn't right


----------



## Grant

I would change your Specialist HorseLover!! TBH I'm amazed he hasn't organized another Colonoscopy for you. Seems just lazy to dismiss it as constipation.
Please get a 2nd opinion.
Take Care
Grant


----------



## HorseLover!!

Grant said:


> I would change your Specialist HorseLover!! TBH I'm amazed he hasn't organized another Colonoscopy for you. Seems just lazy to dismiss it as constipation.
> Please get a 2nd opinion.
> Take Care
> Grant


Thanks Grant he is definitely lazy alright, I am supposed to be in process of changing specialists but it hasn't really gone very far so I think I am going to chase someone up about that


----------



## michelle56

Out of the hospital and back home now! So glad to be back on my feet. Now time to start feeling better again!


----------



## lizbeth

michelle56 said:


> Out of the hospital and back home now! So glad to be back on my feet. Now time to start feeling better again!


Hope you feel better soon.:ghug:


----------



## Ribo

HorseLover!! said:


> It was my specialist he's an idiot anyway :lol: I have had an x-ray and he is very adamant that its constipation, but when I'm constipated I put on weight and I haven't I've lost weight instead I've gone from being 56kg to 51kg which to me isn't right


It sounds like a flare but it doesn't sound like an obstruction  to me - having said that, a trip to the ER and a CT scan can answer pretty definitively. 

I've had some pretty good bouts of constipation that I felt were an obstruction in the past - one or two of those had me to the ER to be sure. The ER docs usually are surprised to NOT find an obstruction based on the pain and descriptions. 

Bottom line is its not impossible, but I'd make every effort to get some imaging done to be on the safe side.


----------



## windy

:HELP I have mega colon-my bowel will not empty all the way . So I use several bottles of water each day to flush out remaining  stool. But that has irritated my intensives so much I burn like fire. Also my biopsy shows chronic inflammation:ee   Doctors have suggest the permanent bag but will this actually work? will my guts be able to push the stool through  the stoma? Does anyone  else flush their bowel everyday? If so please answer this. (Going on for over 4 years ). HELP!


----------



## jazzsous

Just been diagnosed. Is this the norm here as far as what I have to look forward to Blockages? I am not on any meds yet. Just having periodic pain, no diarrhea. I do have an excess saliva problem to the point of choking sometimes. Like a backed up sink and a taste in my mouth like I've been sucking on pennies. Constant nausea. Anyone out there with similar symptoms?


----------



## mere282

Jazz.. 
Everyone is differnt some have more mild cases.
So far I've had one partial obstruction. That 
Didn't need surgery and one hospital stay for
A flare that was about a week. I got sick 
5years ago. I've been lucky so far.  I don't 
Have blood loss or major weight loss I look normal..
Some people aren't so lucky. When do you start meds?
Do you have a gastro?


----------



## jazzsous

Just been diagnosed. Is this the norm here as far as what I have to look forward to Blockages? I am not on any meds yet. Just having periodic pain, no diarrhea. I do have an excess saliva problem to the point of choking sometimes. Like a backed up sink and a taste in my mouth like I've been sucking on pennies. Constant nausea. Anyone out there with similar symptoms?


----------



## canuckscouter

I often have excess saliva and that weird uncomfortable feeling in my mouth. I think they are related to gut bacteria. Using VSL3 (pharmaceutical  probiotic, not the health food store stuff) seems to make that go away. It's expensive but I only use it when things go awry.

Hope that helps with that part at least.


----------



## HorseLover!!

Like mere282 said everyone is different some have more mild cases and some more extreme what you have described in your post seems to me that you are one of the lucky ones on the mild side of thing but that doesn't mean it won't progress into being more severe. I do get the constant nausea which comes with the dizziness too along with that I also get the diarrhea, blood, mucus, weight loss and many other symptoms.


----------



## jazzsous

Mere and Canuck, Thanks. I'm not on anything yet. They keep moving my appt back. Will know next week what I have to look forward to as far as meds. I suppose they will do tests for TB and things before prescibing. Horse Lover. 3 yrs old? I'm so sorry. You have grown up with this. I had colitis when I was 17. Lasted 2 years. Now 30 years later crohns. I am so amazed at so many people with this desease that continue to live life to the fullest and just keep on keepin' on! It really is inspiring and heart breaking at the same time. Thank you again


----------



## Crohn's gal since 1989

jazzsous said:


> Just been diagnosed. Is this the norm here as far as what I have to look forward to Blockages? I am not on any meds yet. Just having periodic pain, no diarrhea. I do have an excess saliva problem to the point of choking sometimes. Like a backed up sink and a taste in my mouth like I've been sucking on pennies. Constant nausea. Anyone out there with similar symptoms?


I got my diagnosis in 1989 and had my first blockages this year.


----------



## fozheart

I hope I am not innapropriate in asking, but Crohn's gal, is the imuran replacing your prednisone and Entocort?  Also, I have read about Questren and my doctor has mentioned it, but how does it help you?

Jazzsous- I hope that your doctor finds the right meds to help you feel better!


----------



## Crohn's gal since 1989

fozheart said:


> I hope I am not innapropriate in asking, but Crohn's gal, is the imuran replacing your prednisone and Entocort?  Also, I have read about Questren and my doctor has mentioned it, but how does it help you?
> 
> Jazzsous- I hope that your doctor finds the right meds to help you feel better!


Entocort and prednisone are similar drugs, just pred is much stronger and has wicked side effects.  Imuran or 6mp are the last stop before biologics (Remicade & Humira).  Prednisone knocked my inflammation down and Imuran is my maintenance medication.  Similar to asthma inhalers, prednisone is like the blue inhaler (reducing inflammation).  Imuran is like the other inhaler that keeps the asthma from reoccurring.

I'm taking Questren is an anti diarrheal to help normalize my system since having the resection.  Losing 50cm of small intestine has caused me to have D due to an inability to absorb the bile salts my gallbladder is producing.  It is my understanding that eventually (fingers crossed) my small intestine and gall bladder will come to an understanding and I will no longer need it.

If you have any questions don't be shy. . I'm happy to share what I know.


----------



## pamshusband

I can really use some advice. I've had crohns for 45 years, mostly mild but constant diarehea and minimal pain. I kept it under control by smoking marijuana.
Starting about 3 years ago my condition has worsened.
I've had a partial blockage going on for over 3 months. I've been on prednisone since early Sept and started Humira 5 weeks ago. i was on a very low residue diet and now on clear liquids but nothing is working. No significant pain and absolutely no hunger. When I drink something my stomach hurts.
So what should I expect? Any ideas? Do I want to force the issue of surgery or wait it out and if so, for how long.
If anyone has advice, i would love to hear it. thanks


----------



## fozheart

My pain when I drink or eat is at the site where they took down the colostomy, and then I had a hernia there.  That is where I feel like the blockage is.  The diahreeah seems to be caused because nothing will go through that area, so it just gurgles, and goes around it, then coming out as D.


----------



## Jennifer

pamshusband said:


> I can really use some advice. I've had crohns for 45 years, mostly mild but constant diarehea and minimal pain. I kept it under control by smoking marijuana.
> Starting about 3 years ago my condition has worsened.
> I've had a partial blockage going on for over 3 months. I've been on prednisone since early Sept and started Humira 5 weeks ago. i was on a very low residue diet and now on clear liquids but nothing is working. No significant pain and absolutely no hunger. When I drink something my stomach hurts.
> So what should I expect? Any ideas? Do I want to force the issue of surgery or wait it out and if so, for how long.
> If anyone has advice, i would love to hear it. thanks


Have you had any tests done recently? Can you request an Magnetic Resonance Elastography (MRE) from your doctor? If you do wind up having a resection you can continue on Humira as maintenance. Chronic inflammation builds up scar tissue over time which makes your intestine more and more narrow so sticking with something stronger than marijuana as maintenance may help to avoid another resection in the future. 

I hope that the Humira helps you to avoid any surgery entirely though. Have you noticed any improvement at all from either the Prednisone or the Humira? Humira can take up to 3 months but Prednisone tends to start working within a few days. An MRE may show how bad the stricture really is (a CT scan can as well but if you're trying to avoid radiation then you'll want to go for the MRE).

If the Humira and Prednisone do nothing to help with your symptoms and things get worse or if you continue to have partial blockages that affect your quality of life then you'll need to discuss surgery. Ask about a strictureplasty and see if that's possible instead of a resection. There's also balloon dilation but its not permanent. Since you're on liquids only right now and you're still having pain then you need to talk to your GI about your options soon. On their next business day (tomorrow) give them a call and see if your GI can call you back if you can't get in soon for an appointment. 

Are you vomiting at all? Have you stopped passing stool? Even while on a liquid diet you still pass something. If the pain gets really bad or if you start vomiting or have a persistent fever then you should go to the hospital because you may be dealing with a full obstruction.

Hope you feel better. Keep us posted.


----------



## Ribo

pamshusband said:


> I can really use some advice. I've had crohns for 45 years, mostly mild but constant diarehea and minimal pain. I kept it under control by smoking marijuana.
> Starting about 3 years ago my condition has worsened.
> I've had a partial blockage going on for over 3 months. I've been on prednisone since early Sept and started Humira 5 weeks ago. i was on a very low residue diet and now on clear liquids but nothing is working. No significant pain and absolutely no hunger. When I drink something my stomach hurts.
> So what should I expect? Any ideas? Do I want to force the issue of surgery or wait it out and if so, for how long.
> If anyone has advice, i would love to hear it. thanks


When I've had obstructions in the past, one of the treatments that was effective was complete resting of the bowel. This is achieved by a relatively short hospital stay (3-4 nights) where an NG tube is inserted and left in place for a few days with low suction to ensure nothing, including stomach fluids, exit into the small bowel. 

The idea is, depending on the cause of the obstruction, complete bowel rest allows the bowel to relax and the obstruction will so ermines resolve itself. 

This may epor may not be viable in your situation, but it may be worth asking about before taking a more invasive approach.


----------



## Creesyrush

I have a quick questions. I keep getting this really tight feeling in my stomach and it is a point that feels like something is being twisted inside. It is so hard to explain it but it causes discomfort and pain at one point.  Is this likely to be a blockage?  I used to think maybe my bowel iss twisting?  Any advise would be appreciated


----------



## Whit

Hello everyone,
I just joined this thread because I just got out of the hospital with my second partial blockage in 18 months. After my first partial blockage I was on prednisone and then gradually moved to Asacol HD. After nine months on Asacol HD I got off it because it was making me very manic and jittery. My lower intestinal pain returned at a mild enough level to tolerate and much to my regret I ignored it. My partial blockage came out of the blue and the CT scan showed it again in the ileum  but the report said the blockage was secondary to mucosal imflamation in the jejunum. So I think as long as you have pain of any type in the lower bowel then you need to rest your bowel as much as possible by going back on a smooth or liquid diet. From what I understand mucosal inflammation means the absorption of nutrients is minimized so I'm going to work on restoring the bacterial balance there if I can. Any suggestions as to how to do that? Anyone have experience with a sister drug to Asacol HD that I might try when I'm off the prednisone. I'd like to say my doctor could offer me this advice but he seems clueless.
Whit


----------



## nini_mini

Hey guys,  I have good news! Well I think it is. Feel free to laugh, but I went to the bathroom this afternoon 1\8\14 for the first time in a week and a day 12\31\13. Literally 8 days with not going to the bathroom. And a lot of LRQ or RLQ (however you say it) pain and nothing was moving and I felt it backing up, so I figured I had a partial blockage since gas came through just nothing else. So I'm very happy that it has past I still have pain but who wouldn't 2 months post op open surgery for bowel resection.? I just find it funny that I got a blockage so soon. I mean I flared 6 wks after surgery and I was borderline anemic from all the blood I lost and pain. Anywho thought I'd share this awesome news!. Hopefully this blockage thing doesn't mean I'm getting adhesions? but that its just my super active CD that's going crazy with inflammation. Also i tried the remidies i kmew for getting rid of blockages and none of them worked so i just had to let it ride out through the pain. Feel free to drop your opinion and any answers to how this happened?


----------



## Whit

Both of my partial blockages which resulted in hospitalization did not even allow gas to get through. As long as I'm expelling gas, even if I haven't had a bowel movement for awhile, I feel as though I'm OK. Maybe it isn't a partial blockage but just slow movement. You didn't mention what you've been eating.
Whit


----------



## nini_mini

Whit. My eating has been very little for over a year. I eat 6 bites of something and im full. I try to show to eat at least twice a day or just snack all day. But um yogurt. Mashed potatoes.  Eggs. Sausage, carrots, green beans, coffee, cheese, crackers!, toast everynow and then, Chicken. Soup. Noodles. Ham. Protien shakes.  Pretty much easy things. Oh and chocolate and some peanut butter pretzels.  God I love them!


----------



## lizbeth

Hello everyone,

I've been keeping up with this thread but haven't posted much recently, I am truly amazed at what you all have to deal with and how you manage. The info you give about meds and food etc is great and I find it really helpful.

I still feel relatively new to crohns and an still learning what works for me but I don't feel I've learnt much cos I don't seem to be getting any better. I've been to hospital twice this week, first time having been sent in from doc-on-call for an ecg cos the pain was that bad a heart attack had to be ruled out, which it was, I was told then it was just the crohns getting worse. Then two days later I was sent to a&e by my gp who said he hoped they didn't give me a pat on the head and send me home, which after 7 hours and no treatment they did.

I'm currently on no meds having been taken off pentasa in Nov by my gi, he feels inflammation from last year has developed into scarring and wants to hold on meds until I have an mri and we can see what's really going on. Since then I'm finding it harder and harder to go to the loo and when I do it feels like razor blades passing through my terminal ileum, I always have pain in the LRQ and am on daily, high dose pain meds and my gp put me on senna and lactose to try and prevent constipation, but still I hurt like hell! I can barely eat cos the more I eat the worse I feel and just the smell of good makes me want to barf.

Sorry for such a long post I'm at my wits end, I'm finding it very difficult to keep a smile on my face and keep going. Thank you for letting me vent and thank you for reading.


----------



## Jennifer

I'm sorry lizbeth. Any news on when your MRI is? Is your GI willing to accept a CT scan instead for now?


----------



## lizbeth

I have my mri on 24th Jan, I had a ct in Oct that showed the narrowing was fractionally better than the year before but not improved enough for them to be content. I have a new gi who seems to be more determined to help but he is stuck within the NHS system though he did try for me to get an mri in Oct when I was an inpatient. It takes weeks here to get an mri  . Once he gets the results a decision will be made as to whether surgery is needed.


----------



## The Real MC

I had a partial obstruction and spent the weekend in the hospital a week ago.  My follow up with my primary care DR was this past thursday.

Just wanted to share that they confirmed that the partial blockage was caused by scar tissue.  The CAT scan showed the blockage right at one of the resections of my small intestine from surgery I had back in 2011.

So scar tissue from resections can cause partial blockages.  No one knows what triggers it, or when.  Some people have blockages multiple times a years, other go years with no blockage.


----------



## nini_mini

Are you doing better now? 
I would of gone to the er but im tired of being there and I'm very stubborn. Whatever it was I'm happy it went away.


----------



## The Real MC

nini_mini said:


> Are you doing better now?
> I would of gone to the er but im tired of being there and I'm very stubborn. Whatever it was I'm happy it went away.


Back to normal, thanks.  In my case the pain was still there after I vomited and I was very dehydrated so I went to ER.   The blockage cleared up after the ER took care of it.  

They said this type of blockage usually clears up on its own.  I was free to go home on liquid diet and return if problems, or be admitted.  Since I lived alone I chose the latter so I was close to help.  Two days in hospital - 1st day on liquid diet, next day moved up to regular diet while monitoring bowel habits over the stay.  IV to hydrate me (1st day I was urinating every two hours!!!).  Recovered quickly and the pain never returned.

"Stitch in time saves nine" is the rule here.  I avoided surgery, additional meds, and I left with no diet restrictions.


----------



## nini_mini

I was the same way but I was just there and was determined to get it cleared myself which in hine sight was stupid because I was In so much pain it was stupid and I could barely move. Lol I'm really glad you recovered quickly and only had a two day stay!.  next time it happens to me I'm gonna go in and get it taken care of.


----------



## nini_mini

And I'm happy you avoided surgery!!


----------



## dave13

A blockage was my introduction to crohn's.I was having abdominal pain off and on for a couple of months.It would hit around 2:30-3:00 a.m.It started out quite mild and I would feel better the next day.Eventually it occured more frequently and I started vomiting.One night I had the worse gut pain and was violently ill.I laid down for a couple hours and went to work not feeling to well.The abdominal pain had subsided.I was at work maybe an hour and was hit with intense abdominal pain.I called my wife and told her I was driving to the ER.The pain increased quite rapidly as I was filling out all the paper work.I went from mild cramping to gut wrentching pain in about 12 hours.I had x-rays,MRI,ultrasound and blood and stool tests.I had a small section in my duodenum the MRI and ultrasound showed to be close to completely blocked.My local ER surgeon said he recommended I go to a hospital,an hour+ drive,because they were better able to handle my situation.My wife drove me and we went through the whole ER paper work thing again.They new I was coming so we didn't have to start from zero all over.They put a tube in my throat to empty what wasn't passing and I was prepped for surgery.I spent 13 hours in ER's,including the travel time,before I was operated on.I had a resection of my small intestine.I was fortunate to lose only 8 inches or so.My surgeon said the duodenum wasn't one of the more common places to be affected by crohn's,though it does happen.He later apologized for all my bruising.He described it as pretty much a disemboweling to get to the area and putting everything back once it was done.The incision was from my belly button down to my groin.Considering what they had to do I think the incision is pretty small.They also scoped my abdomen in four other places.The resection was closed with staples and the scope incisions were sutures.I had the tube for two days and hydrated by IV.I could dip a little sponge on a stick and swab my mouth but couldn't drink because of the tube.I was allowed water once the tube was no longer needed.I couldn't eat anything until they were sure my bowels 'woke up'.I was told not to worry,that it may take longer because my guts were a bit traumatized from the handling.I was able to walk after the tube was removed and encouraged to do so.I was there for Thanksgiving and remember walking around smelling turkey and stuffing.M,M,M,...Later that night I had my first,though very small,proof my guts were working again.My nurse gave me a high five!The walking paid off and the aroma of turkey and stuffing helped,in my opinion.I had saltines Thanksgiving night,and I was thankful!I started out friday morning with some yogurt and fruit and was told if I could keep my food down and continue to have BM's I could go home saturday afternoon.Lunch and supper and saturday breakfast went o.k. and was allowed to leave as scheduled.While there I was started on a morphine drip for pain,than switched to a dilauted drip.I took dilauted and tylenol orally when the IV was removed.They took my vitals every 2 hours and drew blood for tests every morning at 3a.m..I was given heparin shots twice a day to avoid blood clots.I believe I had IV solutions of minerals I was deficient in as well.I was home for about twenty minutes and lifted something a bit too heavy I guess,I got an intense pain in my groin.A inguinal hernia,not incisinal.I write this a day after my hernia surgery,1-24.I had to wait for my resection to heal enough to deal with the hernia.My resection seems to have healed well and if I wasn't rehabbing from a surgery yesterday I feel I would be close to normal from my resection surgery by now.I hope this was detailed enough without babbling.I was in the hospital for 7 days.I urge anyone with abdomen pain to have it checked out.I also recommend walking after surgery as soon as you can.My ward had 'trail maps' with mileage.The 'trails' would lead into other wards in big loops.I found this forum soon after coming home and the support and information has really helped me.This happened so fast I didn't get the chance to discuss options.I suppose I was at a point where I didn't have any.Hope this helps.Keep the faith!


----------



## Karajan

Hi folks I had 19 partial obstructions in 2012, I have crohns and due to previous surgeries I developed adhesions. I had further surgery in February 2013 and after this the original pain was still there. I had wound infections and abdominal abscesses but recovered slowly and returned to work in May of that year. I have been well enough till New Year's Eve midnight saw me crawling around as I couldn't stand up due to dizziness, vomiting and pain. I didn't go into hospital more fool me. I have had another 4 partials since then. I am now flaring and managed to get an emergency appointment for gastro on Wednesday next week. Pain is horrendous, not eating, nausea sweating and joints all swollen. People keep commenting I have lost weight, I know I have by my clothes. I am already on 175mg azathioprine. Last course of budesonide finished in November. Looks like its pred for me. Obstructions are awful and I got a scare in that I had peritonitis  with the last one do not ignore this his can be a life or death complication. I had become complacent and thought I could fight through this but have made things worse. The reason for this is that when I go to hospital they give me fluids, morphine and nil by mouth and my thoughts were I could do this at home so my GP agreed to give me morphine at home to use when these episodes occurred. Even with this the pain is off my scale and all I do is vomit and writhe and squeak as crying is even sore.


----------



## dave13

Wow Karajan,that's quite a few obstructions and surgeries!I hope you have a better stretch ahead.I can empathize with the pain an obstruction causes,it's amazing how much it hurts.Knowing it could happen to me again at any time took awhile to get use to.It was hard to hear my surgeon say I'm in remission now and also I will most likely be back in for more surgery at some yet unknown time in the future.Keep the faith and hopefully someone with knowledge of meds.will submit a post for you. :ghug:


----------



## nini_mini

Wow! you two have been through the ringer with blockages. Its unnerving to know that they can happen at any time with adhesions from surgery. I wish you guys the best of luck in the future with not getting them.


----------



## Karajan

Thanks Dave, feeling not bad today, bowel moved today so will be settled for a couple of days. I have been on low residue diet for forever but even that doesn't work. Toast, tomato soup and 0%  yoghurt. The smell of food cooking is hell ans I still do the majority of the cooking is yuk and puts me off everything. I am a foster carer to. 2 teens so try not to let them see me at my true state, smile and hide upstairs when things are so bab. The other thing is that all my obstructions start exactly 3/4 hours after evening meal so I can feel ok all day therefore eat a bit and then wham 9-10 at night it starts. Sometimes it subsides in the early morning but if I am still in agony then I call ambulance once the kids are going to school. It's awful and unpredictable and no- one seems to know what to do.


----------



## Fosterfamily2303

i get a lot of partial blockages...and when i go to er for the pain they just givee paineds amd send me home. Mine thank god seem to always clear on their own. My pain is intense waves tjat come and go. All i do is stay in tje bathroom. after about and hour in a half i poop...throw up amd pass out for 30-40 min and feel better  . i know now when they coming and just pass it wih the tramadol i have. But its qorse then labor pains!!


----------



## devin.moyer

I was just recently diagnosed with Crohn's Disease. A CT scan showed an intestinal blockage, a colonoscopy showed 2 polyps and 4 ulcers in my large intestine. I am active duty military and had a few questions. First question, does anybody know if the military will medically discharge me because of this disease? I am getting different answers from everybody. My GI says i will most likely be discharged, my PA says no. Second question is, will an intestinal blockage possibly cause lower back pain?


----------



## Grant

Hi devin.moyer, I wouldn't guess how the US military react to such a disease. What I can tell you is that I was medically discharged from the Royal Navy with it in 1986.
Hope you get well soon
Rgds
Grant


----------



## Jennifer

Hi devin.moyer and welcome to the forum! 

I haven't served myself but we do have some other members who are in the military who haven't been discharged because of Crohn's.

As for the back pain, yes a blockage can cause back pain (I had both middle and lower back pain with my obstruction). Crohn's in general can cause inflammation in the joints though. I have osteoarthritis caused by Crohn's and it mainly affects my spine and hips.


----------



## devin.moyer

Ok, good to know. After talking to my doctor, they told me i will go in front of a medical board, and they will decide whether or not i get discharged based on if the army needs people or not and whether or not i would be considered a liability, which really scares me because the army is trying to down size, and i will be put on a non-deployable profile, which they may look at as "this guy can't deploy, what is the point in keeping him in." Is there a military support group? I didn't see one, didn't know if i just missed it or if it doesn't exist.


----------



## Jennifer

I don't believe we have one yet but I can definitely make one as that would be very beneficial. I'll edit this post with the link to the support group. 

Edit: It has been created. Feel free to join and post and hopefully other members will follow.  http://www.crohnsforum.com/showthread.php?p=747530#post747530


----------



## devin.moyer

Thank you


----------



## dave13

can you join this new group if you haven't been in the military?I would be interested in doing so.


----------



## Jennifer

Yes dave13 you can join any of the support groups.


----------



## fozheart

I have felt a partial blockage since I tapered off of my prednisone, at the beginning of January.  Pain has gotten so bad, and I am going for a CT in a few hours.  I am nervous about what they will find.


----------



## Whit

Fozheart,
I asked my family doctor about whether or not I always have to have a CT scan and she said no, that a regular exray could be used instead. I'm concerned about all the radiation. Good luck with yours. 
Whit
PS-After my hospital visit and CT scan I was tapered off prednisone and started on Pentasa. I had quit all drugs three months before I ended up in the hospital with an obstruction and decided to make sure I'm on something all the time to help with the intestinal blockages.


----------



## dave13

What timing for these posts fozheart and Whit.I see my GI today for the first time since my resection for a blockage.I'm quite nervous about it.It's been close to three months of waiting.I am currently on no meds.I can relate to the pain of blockage fozheart,that was my introduction to crohn's.My blockage was found comparing x-rays,CT scan and an ultrasound.Always associated ultrasounds with pregnancy,it showed a great image of my blockage.My surgeon feels my GI will recommend a non-steroidal med to help me stay in remission.5-ASA perhaps.I have to go to work after so I hope our first meeting goes well.I don't feel like putting on the happy face at work and answering questions today.Yesterday was my first full shift at work and today I will be late because of this GI visit.I've been out of work for so long and the week I start working again I have to miss time for a doctors visit.I was so tired after work yesterday,I wasn't sure I would make the whole shift.I'm nervous about going back full time,but I can't afford not to.I am currently in remission so I will focus on that happy thought and do the best I can with everything else.Good luck Whit and Fozheart! :ghug:


----------



## Whit

Dave,
I was diagnosed at age 68 after 40 years of no diagnosis except maybe IBS. Good luck with your GI visit. One question you might be able to help answer is how does one know he or she is in remission? At some point I'd like to get off the Pentasa at least for a while.
Best of luck,.

Whit


----------



## dave13

Whit said:


> Dave,
> I was diagnosed at age 68 after 40 years of no diagnosis except maybe IBS. Good luck with your GI visit. One question you might be able to help answer is how does one know he or she is in remission? At some point I'd like to get off the Pentasa at least for a while.
> Best of luck,.
> 
> Whit


My surgeon told me I was in remission because the resection removed the 'active' crohn's.He so cheerfully told me I will need more surgery in the future but for now I am in remission.My GI put me on Pentasa yesterday,but my insurance provider is giving me grief about it.They don't want to pay for it.My GI's office is gonna try and get that sorted out today.I have to check back with them tomorrow.Have you had any side affects from the Pentasa? My GI prescribed 500mg twice a day for me.He said it is usually taken four times per day but thought twice a day would be good for me.This is good news to me in case I have to scrape the $ together to pay for it out of pocket.One prescription would last me two months instead of one.I currently don't know how I would do that,so I hope my provider comes around.Well Whit,hears hoping you can get off it for awhile and I can get on it! 

Hi Fozheart,how did your scan go?


----------



## fozheart

Hi Dave and Whit!

Hmm... this drug Pentasa sounds promising!  How long have you been on it, Whit?  Do you feel that it is helping as much as prednisone?   As far as radiation goes, I have had soo many tests over the years...CTs, Xrays, MRI's, etc., because I have quite a few other problems. (if you read My Story, it is ridiculous.)  But, I am still standing, and that is a blessing!  But oww.. I am feeling some little "waves" of pain right now, in the area of my previous resection.  I am on Flagyl and Cipro, which has helped considerably in some ways, but the actual blockage site is unchanged.  I am just going to have to stay on liquids as much as possible.  My doctors have not seen my CT yet, but the radiologist ruled out a perforation. (Yay!)  I need to get my colon dr. and Gi to look at it, and get on a steroid sparing agent.  I have a hard time organizing all of my specialists together, and also paying $50 for each visit.

Dave- I sure hope your insurance will pay for the Pentasa!  I did not realize that it was an expensive drug too! I am glad that your GI visit went well- I know you were nervous about not knowing what to expect.  I am wondering what the cause of your initial blockage was?  I hope that you can keep up with your shifts at work- I know that I couldn't do it!  

Thank you both for your replies... :mademyday: it feels better having people that understand!  I hope that both of you are feeling good today.


----------



## dave13

Hi fozheart,I'm doing much better after my meltdown about the insurance.My surgeon and GI are both stumped about my blockage.I guess it was in an odd place as well,more near the top of the jujunum.I first thought it was in the duodenum.They both seem to agree I must have had it for quite some time.They think it was just very gradual until it reached that critical point.Where it was I was told it couldn't be seen with a scope from above or below.It happened so suddenly though.I feel I'll be able to get back to work o.k..I'm finally feeling better after the surgeries.I'm fortunate to have an understanding employer who has showed great patience.I've been out since November.It feels longer.


----------



## Whit

Fozheart & Dave,
I have only been on Pentasa for three months and am just getting off Prednisone after my last hospital visit so I don't know for sure how it is working. My most recent blood test showed an elevated white blood count meaning I probably have a low grade infection in my lower intestinal tract which would account for my overwhelming fatigue. I'll see a new GI at University of VA Monday and see what he wants to do about it.
Pentasa is very expensive but I am on Medicare so that takes care of most of the expense. I am fixing to read your info Fozheart. It sounds like you have had a hard time.
Best to you both
Whit


----------



## fozheart

Let us know how your appointment goes on Monday, Whit!


----------



## The Real MC

The past two weeks I had have minor flare-ups of abdominal pain, nothing severe to put me in the hospital.

Last week I started rubbing my abdomen and felt something move.  So as I narrowed the rubbing down to a smaller area I realized it was right over one of the resections of my intestines.  As I kept rubbing I could feel more movement.  Pain free since then.


----------



## dave13

The Real MC said:


> The past two weeks I had have minor flare-ups of abdominal pain, nothing severe to put me in the hospital.
> 
> Last week I started rubbing my abdomen and felt something move.  So as I narrowed the rubbing down to a smaller area I realized it was right over one of the resections of my intestines.  As I kept rubbing I could feel more movement.  Pain free since then.


Wow,that's great! No doctors involved


----------



## Whit

Went to a new GI at UVA medical center here in Charlottesville, VA and it was a great visit.
He wants to do a small study of my ileum using barium as a contrast to find out whether my obstructions are due to scarring which causes strictures or whether my obstructions are caused by inflammation. After this study we can decide whether I need surgery due to permanent scarring or stay on drugs to control the inflammation.
He took me off the Pentasa which he says is useless for treating inflammation in the small intestine and put me temporarily on entocort to treat any inflammation as he feels this an work better in the small intestine.
At least he has a plan whereas my previous GI just changed me from Asacol HD to Pentasa after my second obstruction without even examining me basically running the same drug program that didn't work the first time. 

Whit


----------



## dave13

this is good news,Whit! Great to hear your GI is being proactive.I'm still waiting to be approved for pentasa.I'll ask my GI what he thinks about entocort for my situation.Good to know your options.Glad your new GI isn't just a drug pusher and is actually doing something to help you.Keep us informed on how it goes! :smile:


----------



## fozheart

Hi Whit and Dave,
So glad you are at a great facility, Whit! I was supposed to go to MCV to see a GI specialist, but can't afford it.  I got my CT results back today.  A lot of things on there, but the main thing my GP said make sense, in light of my non stop complaining of partial blockages and left sides pain, is that there is intussusception in the jejunum that is involved, and also lipoma polyp in the 3rd part of the duodenum.  (Plus some other things I know nothing about.)  We sent a letter to my colon surgeon.  She wanted to start me on prednisone again along with methotrexate.  I asked her about Entocort, and she just does not know enough about it.  I was just surprised that the colon where my perforation and surgeries were, are ok...and that now there is a problem in the small intestine.  I think you mentioned, Dave, that your problems were in the small intestine too.  If I look at my stomach, I don't even know where the jejunum is!  (I can look at a pix, but want to figure out in relationship from like my belly button, or ribcage, etc.  Can you help?  And, the doc explained what this intussusception of the intestine is...it kind of folds into itself.  But how would that happen?  Ohh... don't these things just make you tired?!  I hope both of you are doing ok, on this Tuesday night!
Carol


----------



## dave13

Hi Carol,
   The way my surgeon explained it:There is no definitive point where the duodenum ends and the jejunum starts.If I understood him correctly.I assume he meant there is little physical difference.Small intestine looks like small intestine,even though they have different specific purposes.My pain was just above my belly button.The resection scar is from my belly button down.My pain was definitely at belly button level and a bit higher.It was an odd spot,I keep getting told.Towards the upper part of the jejunum.If you look down at your belly button,just above it is the area I'm talking about.
   I looked up intussusception.Wow,I hope your docs can help you with that.It would be nice if crohn's stopped throwing new challenges at you!
   I hope this helps.I do agree it can get tedious.We come to grips with one thing and crohn's throws something else at us.Keep the faith! :ghug:
                                                        Dave


----------



## pink&green

Been up all night with hubby pain on his left side where resection was I asked how long has he had the pain he said a few weeks:ymad: 

He was up all night running to the bathroom last I counted was 7x in 4 hours. We have an appointment with his CRS next Wednesday about the fistulas i will bring this up to her. I also told him to call his GI to see if he can give him something for the pain. He's not running fever so far I asked if he needs to go to ER he said it's not that bad.


----------



## carbuncle

Ibuprofen or any NSAID might be the cause of the continuing issues.  It is a big no no for Crohns and maybe IBS.  Look into other pain meds or prednisone for inflammation management.  Has Cimzia or Remicade been explored?   It did heal up my fistula but became less effective after a few months.  Your reaction maybe different.


----------



## pink&green

Thanks carbuncle, he is currently on Remicade 4 years now, fistulas are still there he just called his GI spoke wit the nurse she said she would let the DR know and call him back.


----------



## fozheart

dave13 said:


> Hi Carol,
> The way my surgeon explained it:There is no definitive point where the duodenum ends and the jejunum starts.If I understood him correctly.I assume he meant there is little physical difference.Small intestine looks like small intestine,even though they have different specific purposes.My pain was just above my belly button.The resection scar is from my belly button down.My pain was definitely at belly button level and a bit higher.It was an odd spot,I keep getting told.Towards the upper part of the jejunum.If you look down at your belly button,just above it is the area I'm talking about.
> I looked up intussusception.Wow,I hope your docs can help you with that.It would be nice if crohn's stopped throwing new challenges at you!
> I hope this helps.I do agree it can get tedious.We come to grips with one thing and crohn's throws something else at us.Keep the faith! :ghug:
> Dave


Thank you for your quick response! Umm,  yeah..  I pressed right where you said- right above the belly button, and OUCH!  ale: Maybe I will make a thread to see if anyone else has had this intussusception problem.  Mostly, I wonder how it would have happened!  Yes, we are are always ready for a new surprise in our journeys!


----------



## Whit

Fozheart,
I think you will have to give yourself a daily shot under the skin on a daily basis for methotrexate.
Whit


----------



## fozheart

My GP gave me oral MTX.  Go figure... I have been on it before, for Lupus and R.A., and really do not appreciate the side effects- feeling cruddy for a day or so.


----------



## pink&green

Hello fozheart good idea on the thread, I just called my hubby and asked him to press above where his belly button was and he said that's where he was hurting just to the left. Thanks for the tip Dave13.


----------



## dave13

Glad I could help,Pink&Green. :smile:


----------



## chuckmya

I have suffered with constipation since the age of 10!!! I believe I had my first obstruction then but ER doc ruled out appendicitis and sent me home!! For the next 2 weeks I was in agony..... Couldn't eat or drink or have a BM. Several years later the same happened again.....ER doc ruled out appendicitis sent me home with laxatives and a diagnosis of gastroenteritis. Several years later again it happened! This time I needed surgery 1999 bowel resection removed 12 inches of small bowel and 6 inches of colon. Just 3 months later again I have an obstruction with perferration! This time they think I have CD so they do a temporary ileostomy! Reversal 6 months later. I see a GI that says I do NOT have crohns???? About 5 years go by and again I have an obstruction that requires surgery.....2012 another obstruction but bowel rest rehydration and NG tube do the trick. 2013 small bowel obstruction again that requires surgery! 2 large stones are found and anastomoses is revised. Feb 2014 GI bleed colonoscopy reveals ulcers of terminal ileum being the cause of bleed! Surgeon and GI believe NSAIDs is the cause? But it don't believe it! This mess has been going on for over 30 years and still no diagnosis!! How can I have all these symptoms and obstructions and no diagnosis??? I have a very high pain threshold....but obstructions are the most painful thing I've very experienced! I have had 2 all natural child births as well and the pain is far worse with an obstruction! The pain comes on suddenly....one min I'm fine and then bam!!! The pain for me is also in waves with peristalsis.  So frustrated with no diagnosis!!!!


----------



## Zeppy321

Just wanted to join this group. I've had lots of partial obstructions.


----------



## chuckmya

Hi everyone! I'm going to see my GP in a couple of weeks and was wondering what types of blood tests for inflammation detection I should ask for? CRP and ASA?? And what type of vitamin testing should I be looking to get?? B12 anything else?? I would appreciate your input!!!! Thanks.


----------



## fozheart

A sed rate would be good too, chuckmya.

Update on my intusussception-  Second day of 60mg of prednisone, I felt a funny sort of pop, right where the intusussception is, in the small intestine! It feels much better! That night as I layed in bed, my stomach was making lovely noises, and it actually was the first time in MONTHS that the noises and movement was in the center of my belly.   The last week I have had the easiest and most normal activities in the bathroom than in a longggg time!   No D, and no skinny ribbon stool.  It is like a normal person!  So.... the pred obviously took away some inflammation, but I wonder if it actually helped the kinked up area undo itself.  What do you think?  Of course, I am tapering the pred....down to 20.  We are trying to get off of it quickly, as I have had too many complications from it in the past. (Been on and off of it for 22 years. (Lupus, pulmonary issues, and now GI stuff.) I was supposed to restart methotrexate, but I just can't seem to do it.  My immune system is already compromised, and I don't think I am strong enough to handle it right now.  But.... something has got to replace that prednisone.  I would never be a candidate for a biologic med.  We just do not have the money.  Ugggg.... these drug decisions!  My little body wants a vacation from them, but I cannot function well without them.

Sorry.... this is poorly written.  I am tired, but needed to put my thoughts out to you!


----------



## dave13

Good to hear the progress Fozheart! Good question about the prednisone unkinking your small intestine.Maybe a combination of factors?


----------



## Karajan

*Intussusuptions*

This is when the bowel folds in on itself. Like if you pull your arm out of jacket but leave the sleeve inside the arm, not inside out more half in half out. I have suffered with this when I had my first sub total colectomy where the small bowel was stitched to the rectum end to end. The only way they could stop this was to join the small intestine side to the rectum so my diagram will show you 
This is the way it was.                      This is now
(). Small intestine.                          ()()  Small intestine
()                                                  ()()   Rectum.          With a hole to allow
() rectum
().                                                          Waste to go from 1 to the other

Sorry diagram isn't the best but hopefully you get the general idea.


----------



## Karajan

Oops it hasn't quite worked out anyway imagine a tube that's how it was joined previously and now it's like tubes side by side with a hole to allow the waste to go from small intestine to rectum. This has worked well for many years. However now the scarring is such that very little waste gets through and hence my new obstructions are frequent. My belief is that my next option will be an illeostomy but will have to wait and see what this round of testing says.


----------



## fozheart

Thank you Dave and Karajan! (esp for the explanation!)  I am too tired to think tonight, but happy that I have such good friends on here.  Having people that understand makes me feel less alone! :ghug:


----------



## dave13

fozheart said:


> Thank you Dave and Karajan! (esp for the explanation!)  I am too tired to think tonight, but happy that I have such good friends on here.  Having people that understand makes me feel less alone! :ghug:


Support really helps us deal with what we go through.The forum really helps me emotionally and with information.Support from everyone is awesome here..With so many crohnies,there is quite a lot of experiences to draw on.Crohnies helping crohnies,right? :smile:


----------



## MichelleE

I would like to subscribe to this support group.  I just had a bowel resection done in February and would love to hear / share others experiences.


----------



## carbuncle

How did the resection go?  The docs keep pushing for one!

Ciao,
Carbuncle


----------



## badbelly

I'd like to join this group. I've been hospitalized with two full obstructions and with a partial obstruction. Maybe I can be of help to others. Hoping I never have to go through it again though!!


----------



## dave13

MichelleE said:


> I would like to subscribe to this support group.  I just had a bowel resection done in February and would love to hear / share others experiences.


Hi MichellE

I had my resection done last November.Feel free to ask me anything.It's a slow healing process,don't rush yourself.


----------



## fozheart

Hi MichellE, Welcome to our group! I know I sound like a parrot repeating myself, but please be careful with any strenuous activity or lifting- not just for a few weeks, but for a few months.  Those incisional hernias are easy to happen!  MichellE and Dave13, did you have a colostomy with your resection?  I don't understand why some people do, and some people don't.


----------



## dave13

fozheart said:


> Hi MichellE, Welcome to our group! I know I sound like a parrot repeating myself, but please be careful with any strenuous activity or lifting- not just for a few weeks, but for a few months.  Those incisional hernias are easy to happen!  MichellE and Dave13, did you have a colostomy with your resection?  I don't understand why some people do, and some people don't.


My surgeon made me aware before the procedure a stoma could be a possibility. Possibly temporary or permanent.Since my procedure was an emergency operation we didn't have a lot of time to talk.I was in so much pain and they wanted to deal with my blockage.

I was fortunate I did not need an ostomy,temporary or permanent.My resection was in my upper jejunum of the small intestine,an odd place I am told.Closer to where the duodenum ends and the jejunum begins.

I guess if we can't deal with our bodily waste is the main reason an ostomy or J-pouch is considered.What goes in,must come out.If our body is not capable of evacuating waste on its own,we need assistance to help it do so.

Check out the stoma support group,a good place to post such questions.


----------



## calmesfam

I have have full and partial obstructions.  The first one was a full obstruction.  Fortunately I had been talking with a Crohn's patient 3 weeks prior and he described an obstruction. Since I had not had one in the 25 years of having Crohn's I listened patiently - glad it probably never happen to me.  Then one day I was eating bean soup at a restaurant and halfway throught the soup I suddenly felt TOO full.  Went home, and still felt like I had eaten at a buffet instead of half a bowl of soup.  Then pain and nausea.  I never throw up, but did, and found myself on the bathroom floor (just like the Crohn's friend discribed!) So the thought occured to me.  But who wants to go to ER and be embarrassed to find out nothing is really wrong? After feeling worse it was all I could do to walk out in my PJs and into the car for a ride to the ER. By the time I got there the pain WAS SO INTENSE.  Here is how intense....even though I had three lovely, wonderful children I wanted to die!!!!!  I could not even pray for myself. They kept telling me with each injection of pain med that "this should take care of it" - but nothing. After 3 injections and an NG tube (which I welcomed after it was inserted) I had relief.   
This obstruction was the beginning of more to come.  But they only came at that time of the month, and only then.  No one could figure it out.  One doctor suggested it was endometriosis and that I would have this problem during my monthly cycles, so he set me on a prescription to regulate my hormones, and that seemed to work.  
We carried on with our plans to move to Taiwan! I felt fine for 4 months, then had another partial obstruction in my apartment in Taiwan. So scarey!! And statistically Asians don't have Crohn's disease so I knew I was in a predicament of not having doctors who are expereinced with it.  I gave up on the suggestion that it ws endometriosis, and KNEw it was Crohn's.  I went through 3 more partials obstructions, and needed to be hospitalised for one in Taiwan. Then got my rear to the good ol' USA and had the operation that I really needed a year prior.  My ileum had been narrowed so much by inflamation, and with a bowel resection I have felt fine for the last 7 years - thanks to God and 6MP!!!Now I live in Taiwan again.


----------



## calmesfam

I have have full and partial obstructions. The first one was a full obstruction. Fortunately I had been talking with a Crohn's patient 3 weeks prior and he described an obstruction. Since I had not had one in the 25 years of having Crohn's I listened patiently - glad it probably never happen to me. Then one day I was eating bean soup at a restaurant and halfway throught the soup I suddenly felt TOO full. Went home, and still felt like I had eaten at a buffet instead of half a bowl of soup. Then pain and nausea. I never throw up, but did, and found myself on the bathroom floor (just like the Crohn's friend discribed!) So the thought occured to me. But who wants to go to ER and be embarrassed to find out nothing is really wrong? After feeling worse it was all I could do to walk out in my PJs and into the car for a ride to the ER. By the time I got there the pain WAS SO INTENSE. Here is how intense....even though I had three lovely, wonderful children I wanted to die!!!!! I could not even pray for myself. They kept telling me with each injection of pain med that "this should take care of it" - but nothing. After 3 injections and an NG tube (which I welcomed after it was inserted) I had relief. 
This obstruction was the beginning of more to come. But they only came at that time of the month, and only then. No one could figure it out. One doctor suggested it was endometriosis and that I would have this problem during my monthly cycles, so he set me on a prescription to regulate my hormones, and that seemed to work. 
We carried on with our plans to move to Taiwan! I felt fine for 4 months, then had another partial obstruction in my apartment in Taiwan. So scarey!! And statistically Asians don't have Crohn's disease so I knew I was in a predicament of not having doctors who are expereinced with it. I gave up on the suggestion that it ws endometriosis, and KNEw it was Crohn's. I went through 3 more partials obstructions, and needed to be hospitalised for one in Taiwan. Then got my rear to the good ol' USA and had the operation that I really needed a year prior. My ileum had been narrowed so much by inflamation, and with a bowel resection I have felt fine for the last 7 years - thanks to God and 6MP!!!Now I live in Taiwan again.


----------



## Too Many Bum Steers

Many of these stories are similar to mine.  My obstructions are also at that "time of the month" and for some reason my doctors, even GI doctors were mystified by them, so my care was always from other directions... Endometriosis was controlled with birth control until that gave me blood clots and I went on Lupron.  No period, no obstructions.  Until they overdosed me on Lupron and I chose to control the body with fish oil after that.  DHEA is my new wonder supplement and I'm wondering if the obstructions weren't happening right before my period because of the estrogen drop.  I think, because I wasn't bleeding yet, I wasn't classified as Crohn's yet.  But the GI docs were definitely saying IBD already.  I was out of the category of IBS.  I think all this categorizing is kind of silly and wastes everyone's time.  It confuses the doctors and the people.  If you get sick after eating EVERY TIME, then you have some kind of IBD.  Why is that so confusing to doctors.  Why are they so reluctant to just diagnose it and move on?

I control the blockages with magnesium citrate (and lots of water) over the course of a day, and I usually do this about once every 10 days just as a preventative now.  I could switch to Miralax, but A. I don't like that I can't get a script for it anymore (well I could, but it would take a lot of explaining that it's cheaper to get a script...) and B.  I'm not 100% sure that it's totally non fermentable.  It seems to get a funny smell if you contaminate it, a vinegary smell.   

I have less skill with diarrhea, except to stop eating, and when I feel brave enough, try bananas first.  I don't touch many foods, mostly as prescribed by SCD diet.  And that has helped with the bloating to the point where I actually have a waist again.


----------



## chuckmya

I've had several obstructions over the past years! I too had natural childbirth and nothing can compare to the pain of an obstruction. For me I'm fine one minute and without any warning comes intense pain in wave like episodes. My abdomen usually gets huge as well....kinda like being 7 months pregnant. Soon after the pain begins the vomiting starts as well! And yes the NG tube helps tremendously! I've had that on several occasions as well! Def not a pleasant experience and one I don't care to experience anytime soon! Hoping for a diagnosis soon so hopefully I can avoid any further obstructions or surgeries!!! By far the worse pain I've ever felt!!


----------



## hawkeye

I posted earlier (2011) about an obstruction I had in the large intestine. Following my recent resection surgery I had an obstruction in the small intestine. The pain was severe (8/10) and came in waves like the large bowel obstruction.  

One thing that was different with the small bowel obstruction though was severe heartburn / indigestion - it was unlike anything I had had before.  I actually started to have the heartburn before I was released from the hospital following my resection - I got home and had to go back in the second day after I was released with the obstructin.


----------



## dave13

My CD is in my jejunum near the duodenum.I suffered for years with hiatal pain when I laid down.Since my resection I have had no recurrence of this.


----------



## dizzi2684

kenyasolovely said:


> Me too! Both my births were not even bad...at all!


My husband didn't even believe me when I told him I was in labor with our second child. I had to put my son in the car and everything before dragging husband to the car. (4am). He said I was too calm for being in labor. 3 hrs later and natural childbirth (both were natural) I gave birth. I was diagnosed with crohns two years later. But had battled it for ten years before knowing it was crohns. 

My question is after blockage has passed (I'm going through this now) how long til pain goes away. It's not as severe most days as when I went to the Er but the pain is still intense. My GI says I have scar tissue build up in my ilieum. He put me on prednisone and Vicodin for the pain. But after two weeks pain is still intense he says the prednisone isn't working and I'm in the process of trying to get on remicade. I just want the pain to subside.


----------



## Whit

dizzi2684
I think as long as you are flaring the pain will be there at different intensities. It is hard not to be nervous because what bothers me with the low grade discomfort I always have below my belly button is whether when it ramps up a bit and gets painful is it because of too much to eat or the wrong foods that might be leading to another obstruction. I am hoping a day will come with no pain at all. 
Good luck
Whit


----------



## dizzi2684

Thank you.


----------



## Daisy123

Had too many blockages due to strictures. Waves of cramping pain, no bowel movements, and distension. I stop eating, stop all medication, painkillers should not be taken as they will make it worse, and finally vomiting. I have never gone to hospital which is not good, as once I was very close to passing out in the toilet. I use visualisation and deep breathing. But I would recommend anyone with these symptons to go to hospital and not self manage.


----------



## The Real MC

Felt another blockage coming on as I went to bed last night.

The last time I had a blockage that landed me in the hospital, the cat scan revealed that it was near the scar tissue where I had surgery.  An unfortunate consequence of the surgery is that this does occasionally happen.  Some time later I had pain again and when I rubbed the spot where the pain was, I felt something work free and the pain stopped.  On another time I had occasional pangs but not painful.  When I tried oat bran snack sticks with water, it cleaned out my plumbing and the pangs stopped.  That must had been a partial obstruction.

Last night as I went to bed, I started feeling abdominal pain in the same area.  I tried rubbing it, couldn’t get any relief.  So I ate some oat bran snacks with water.  After I let it digest I rubbed again and felt it break free.  Zero pain since then.


----------



## theOcean

A spouse recently posted on the forum asking for help regarding obstructions! She's very worried about her husband, and if anyone here could offer some input to her, that would be great.


----------



## dulce75

I'm new here, and I found this forum after trying to find answers to my concerns about my husband's recent surgery. I apologize in advance if this is long, but I need some reassurance and some advice.

To give you a summary of his disease: he's had bowel issues his whole life. He wasn't diagnosed with Crohn's until he was 16 (he is now 33). Four years ago he went in for a colon resection after not being able to have a bowel movement for a few months. What they found was a massive super colon that was so diseased that they had to remove it. He woke up, 9 hours later, with an ileostomy. They left things so that he could be reconnected later, but he has opted not to do that.

He has been pain free for those four years and loving it (after 29 years of almost constant pain). However, about two weeks ago he complained about gas pains in his abdomen. After trying Pepto, Gas-X, and Tums, he didn't find relief, and soon he was almost crying in pain. I took him to the E.R. They did a CT scan and then also an X-ray study with contrast and did find an obstruction in his upper intestine. They admitted him and he was there for 6 days; most of the time on an NG tube and a catheter. He even managed to vomit with the NG tube down his throat. They released him last Friday because he thought he saw stool in his pouch and he was feeling better (no, they did not do a final X-ray or scan to verify anything).

All day Saturday he complained of pain. It sounded like dilaudid withdrawal to me (I'm a psychotherapist and work with people with addictions) so I was more concerned about the fact that they just stopped the dilaudid cold turkey and put him on Percoset and figured he was going through withdrawals. By Sunday morning he was crying (and he never cries), and in worse pain than ever, so I took him back to the E.R. They did a CT scan again and found that his obstruction was worse and possibly caused by adhesions from his colectomy surgery. He had surgery that evening, and they found a stricture and had to resect about 4 inches of his upper intestine. He was NPO for a few days, then on clears. He had severe pain. They had to re-open his incision because it was full of puss, and while no infection was found, they put him on a wound VAC. A day later (yesterday), they sent him home with a portable wound VAC. He was having gas pains (both intestinal and in the abdominal cavity), but was eating, and was successfully passing stool in his pouch.

He woke up feeling pretty good today and even asked me to cook him some eggs, which I did. He didn't really eat much of them, though, because the gas pains came back severely, and he sat there, crouching in pain, asking if he could possibly still have an obstruction? Of course I don't know the answer to that, but I hate seeing him in pain. He them vomited three times (the few things he has eaten today), and informed me very little has come through his pouch. 

He has now been re-admitted and has what they call a mechanical obstruction. Again. Only a week later. He's had CT scans and X-rays but no MRIS. Could this be Hs Crohn's coming back? What should I ask the Dr. When he comes in? Obviously a resection didn't help much.


----------



## The Real MC

Another obstruction came on last night.  And again, I was able to clear it with oat bran snack sticks and 12oz of water, letting it digest, then rubbing my abdomen.


----------



## dulce75

The Real MC said:


> Another obstruction came on last night.  And again, I was able to clear it with oat bran snack sticks and 12oz of water, letting it digest, then rubbing my abdomen.


I will have to suggest this to my husband if this happens again, which the doctor said it probably will, considering it was due to adhesions. It was such a frustrating three weeks (he did get an abscess after the surgery). He's home now, with a wound vac, but he'll have missed about a month of work. 

I want to be better prepared in the future. Where can we find oat bran snack sticks?


----------



## dave13

Hi dulce75

 Wow...as a husband who has a very supportive wife I thank you.It makes such a difference.

Your husband has been through so much.Has he had the same GI through out?It seems after such an established case of CD there would be a better plan to move forward.

My blockage was found using sonogram as well as MRI and x-ray.Mine was in my jejunum,near the duodenum.I experienced much of what your husband has gone through.Pain,sickness,etc..

Since my resection I have felt much better.It will be six months the end of May.My meds are 500 mg Pentasa twice a day and medicinal cannabis.

I'm happy to help with any questions I can answer..keep the faith.


----------



## The Real MC

dulce75 said:


> Where can we find oat bran snack sticks?


I found them in the bulk section of my grocery store, but not many stores stock them.  I also found them in specialty stores that sell nuts.  They look like the sesame snack sticks.


----------



## cleuger

Does an obstruction or partial obstruction cause a buldge in the left colon thats where most of my disease is and stricture is. I had this before but not quite this bad I have a call in to GI but havnt heard back I am not vomiting or feverish or anything like that. But the buldge is there and it is a little painful tylonal takes the edge off but thats it off put myself on liquids only today. Could this maybe be a partial or something I dont know. 

Tia


----------



## DJW

Hi Tia. I think you've done the smart thing in calling the doc and going on liquids. Hopefully it's just a narrowing. If things get bad before the doc calls don't hesitate to go to the ER.


----------



## cleuger

Well went to ER yesterday morning and posting here for those seeking abscess and fistula information I ended having surgery last night after ct scan revealed a huge abscess on bowel a fistula connecting it to another part of bowel I think they said I want copies of reports. Anyway I started by getting 3 units of blood not sure why anemia follows me the way it 
does. Anyway I now have a hole In my side and and on antibiotic had all kinds of EKG , chest ex ray and CT Scan


----------



## The Real MC

Another obstruction last night, this one took longer to clear.

I'm beginning to identify a pattern.  The last two started after a meal at a restaurant involving excess cheese (tomato & swiss soup, the other being pizza with extra cheese).  I have no problem at all with cheese I buy from grocery stores because I make sure it is not processed cheese.  I don't have that control with restaurants.  Restaurants are notorious for using processed foods (ever read the ingredients on those containers labeled "butter flavoring"? Ugh!) to keep costs down and stay competitive, beginning to suspect that processed cheese is causing my problems.

Going to shy away from restaurant meals with cheese and see how that works.


----------



## theOcean

Letting everyone know that Strictures & Obstructions is now its own subforum! I'll be helping move posts there shortly.


----------



## Zebrina

Serious question: I'm in the hospital getting over my obstruction and the just took the tube going from my nose and throat out today. I have a lot of gas in my stomach and I can't pass it or go #2. Is this normal? I'm suppose to get discharged tomorrow, I've already been here since Friday. Before they took the tube out I was passing gas like crazy. Please help. I'm trying to sleep on my left side to see if that helps.


----------



## dave13

Zebrina said:


> Serious question: I'm in the hospital getting over my obstruction and the just took the tube going from my nose and throat out today. I have a lot of gas in my stomach and I can't pass it or go #2. Is this normal? I'm suppose to get discharged tomorrow, I've already been here since Friday. Before they took the tube out I was passing gas like crazy. Please help. I'm trying to sleep on my left side to see if that helps.


Before I was discharged after my resection I had to have a bowel movement and be able to eat solid food.I was told they wanted to be sure my bowels had 'woken up'. Once the ng tube was removed I could suck water off a swab,progressed to drinking small amounts of water and eventually started with yogurt,etc..This took four days before I had signs of bowel activity.I had to have several meals and do well with them before being discharged,that was another couple days.

I would be concerned about not passing gas or #2.Voice your concerns to your nurses and dr..


----------



## dave13

I had something odd happen.I was standing and talking to a friend.I suddenly got a sharp pain on my right side,belly button height but more to the right.It was quite painful and lasted a few seconds.

That was four days ago.I hadn't experienced it before and(so far)it has not happened again.Any thoughts?

I also experienced some mild pain in my abdomen,on the left side,last week.It felt better when I massaged it.This happened 2-3 times over a two day period.A very different sensation than I described above.

My resection scar runs between these two places.

I see my GI this coming Monday so I will let him know.


----------



## dave13

I saw my GI Monday and I am having a small bowel follow through this morning.Yesterday was seven months since my resection,so I guess the SBFT is timely.

Will this accurately show how I am doing? Of ways to monitor the upper GI how does the SBFT rate? Is there another test I should ask about?

If I am fasting,not even water,what about taking my morning Pentasa? My usual med schedule would put me an hour into the test.I'll bring my morning dose with me and ask them.I'd rather not miss a dose,but I'll do what they say.

Talking with my GI on Monday,I found out he has a 'start with the mildest med first' approach.I am not sure if that is a good thing.I can't afford anything more expensive than what I'm doing now anyway,may be a moot point from the start.


----------



## The Real MC

Definitely keep up the fluids as it helps to keep the waste pliable as it moves through your piping.

That is from my GI who is an expert on Crohns.


----------



## The Real MC

When I recently visited my GI (who is head of the GI department and is an expert on Crohns) I told him of my remedy of oat bran snack sticks, fluids, and massaging the area of pain during a blockage.   He told me to keep doing that.  He said that intestines can shift after a resection and the piping could knot up, and that may have been why it worked.

I also told him that I suspected that processed foods may trigger a blockage.  On more than on occasion my blockage was triggered after a meal in a restaurant involving cheese - tomato & swiss soup, certain pizza.  I have no problem with cheese I buy in a grocery store - deli, block cheese, cheese curds, etc.  Every time I have a blockage it followed a restaurant meal with cheese, and they often substitute processed foods like cheese.  My GI doctor thought there might be a connection.

Yesterday I went to an appreciation lunch at work.  They had pizza from the restaurant whose food triggered the blockage.  I suspected it was the garlic pizza because they changed the recipe this year (I used to eat it for years with zero problems) and it had less garlic but twice the cheese.  And the cheese tasted different from the other pizzas.  They had plain, pepperoni, and that evil garlic.  I passed on the garlic and had no blockage problem.


----------



## dave13

I am optimistic about the small bowel follow through results.The reason is after the first images were taken,before drinking the dye,the Dr. came out and asked me where my resection was.He said he can usually tell where the intestine was re-connected but couldn't tell in my case.I'm hoping that is a good sign I'm still healthy around the resection area.

It took over eight hours to complete that test.I admit to not being prepared for that time commitment.

One of the nurses did show me a few of the images.Yup,they look like guts.

My GI should have them now and hopefully will call me early next week.


----------



## The Real MC

Another brief obstruction this weekend cleared again by fluids, oat bran, and massage.


----------



## dave13

Hopefully I will hear some (good)news soon.I would like to view the images with my GI but I imagine I will just get a phone call.


----------



## The Real MC

Well, sometimes the home remedy doesn't always work.

Last week I was in the ER twice with partial obstruction.  During the first ER visit the cat scan showed no sign of inflammation or infection, and it confirmed the partial blockage.  They consulted with my GI and put me on 40mg prednisone for two weeks and sent me home with diet of high fiber and lots of fluids.

Three days later I had a really bad pain from another blockage, by the time I got to the ER it had eased up but I was playing it safe.  By the time the doctor examined me there was zero pain on my abdomen so they sent me home.  The pain had exhausted me and it took a couple of days to recover.

That was five days ago and I am feeling much better.  Zero pain.  My bowel habits have improved with regular solid and formed stools which I hadn't seen in a long time.

I had my reservations about the prednisone but it seems to have done the trick.  Sometimes diet isn't enough to clear obstructions.


----------



## Lam123

After a blockage has been diagnosed, I have always been told to do liquids only for a week, then slowly start on mashed foods and work my way back to regular foods slowly.


----------



## dave13

I am recovering from a fistulotomy and the placement of five setons,_BUT_..

the results from the SBFT were great.The sections of jejunum that were rejoined look healthy and seem to be healing well.There was no sign of inflammation in my upper GI tract at all.So,for now anyway,the stricturing CD is at bay.


----------



## Daisy123

Not sure whether I am obstructed or the bloating is from the IBS, but I look nine months pregnant. I am going off my high fibre diet and back onto the low residue one. I am too frightened that more fibre will send me to hospital. I am trying grape juice, hope it works.


----------



## The Real MC

Try organic apple juice, I was drinking that since my last episode and it seems to crank up the movement.  I found that grape juice can make it worse.


----------



## Daisy123

The Real MC said:


> Try organic apple juice, I was drinking that since my last episode and it seems to crank up the movement.  I found that grape juice can make it worse.


I drank half a cartoon of the bloody stuff. There is movement but still horribly distended, and bulging more on the left hand side. I don't feel I can phone my hospital because I created such a fuss only to be told that it was IBS and adhesions (although I think they threw adhesions in to keep me quiet). I know bloating can happen with IBS and honestly I think my hospital is fed up with me now. I'll give apple juice a go in the morning.

Thanks


----------



## Daisy123

The Real MC said:


> Try organic apple juice, I was drinking that since my last episode and it seems to crank up the movement.  I found that grape juice can make it worse.


Well half a litre of red grape juice eventually got things moving, now they won't stop moving! But much better than being bunged up. I also used the advice here to massage the stomach. Thanks all


----------



## Jessica Andrew

I am new to this forum. I have had Crohn's since 1991. I am 38 now. I have had one resection of the small intestine. I am currently having a flare/partial obstruction. I have these quite often. Once a month, if not more. I can not eat or drink during these and vomit until I get everything out of my system. It's a vicious cycle. I am going back to Dr. today. Is there some type of drug to help lower inflammation I can ask him about that I can take just during a flare? Thanks.


----------



## Daisy123

I am on Pentsa which works for small bowel inflammation.


----------



## Jessica Andrew

What side effects do you have with Pentasa?


----------



## Daisy123

Honestly I have had no side effects, so I really like it. Cannot say the same about Aziathropine unfortunately


----------



## The Real MC

No side effects with Pentasa since 2011 when I started it.

I started having frequent obstructions this year, once a month.  You can have obstructions without inflammation, I had two cat scans this year that confirm it.

Obstructions are a consequence of your resection but not always associated with a Crohns flareup.  The adhesions where your intestines were rejoined are where foods can sometimes get caught and cause an obstruction.  My GI also said that the intestines may knot up after a resection.  I have to be very observant to what foods may have triggered this and I have established some patterns.  Unfortunately no two crohns patients have the same triggers.

Pentasa can't correct this.  Two weeks ago they put me on prednisone after a bad episode and it seems to have cleared it up, I have felt much better.  Your intestines are a muscle and prednisone weakens your body muscles as a side effect, and this can help free knotted plumbing.  High fiber, lots of liquids, and low residue diet also have helped.  Again the same liquids don't work for everybody, but best to avoid diuretics like coffee that can dehydrate you (esp the high octane stuff).  I discovered that after letting the fiber and liquids work its way through that massaging the area of pain may work loose the obstruction.  My GI is a crohns expert and he did encourage those remedies.  

If you can't hold down foods or liquids then you may have a severe case that should be addressed ASAP.  Good luck.


----------



## Jessica Andrew

I have not been on any prescribed medications for quite some time. I take strong probiotics and Reliv which is a nutritional supplement. I think it might be time for me to go on something else as I am having problems quite often. I have just heard such horrible things about being on Crohn's medications so I am very nervous. Thanks.


----------



## DJW

Hi Jessica. I hope you see your GI doctor on a regular basis. You're at greater risk for crohns complications (they can be serious) than the risk of the crohns meds. 

I hope you stay well.


----------



## Daisy123

I seem to have another partial obstruction today. I am trying senna tonight to see if it helps especially as I am using oramorph for the pain, twice daily. I am also drinking apple with ginger juice. Feel fed up but want to avoid hospital at all costs.


----------



## Jessica Andrew

My Doctor put me on Pentasa and prednisone. I hope I can quit vomiting so I can take them. If I'm not better in a Few days he will admit me to the hospital. Ugh.


----------



## The Real MC

Don't hesitate to seek medical help.  The last time I waited too long, I needed surgery.  A stitch in time saves nine.


----------



## Kittee

Well, poop.

2weeks ago I had an full blown obstruction in rural bumb duck GA while on vacation. 
Emergency hospital visit. They wanted to do surgery, I refused. Came home, saw doc, got on pred etc.

Had my MRE yesterday, haven't heard a peep back yet. So figued it must have been clear.


WRONG.
FML I am in bed now and I feel its blocking up again.
Emailed my doc, but I'll probably be at the hospital again tomorrow.

Since I am not spraying puke atm, just super bloated, full feeling and mild nausea,  I will just ride it out at home. Sigh...


----------



## Jessica Andrew

Sorry that you are having to go through that. I hope you do not have to be admitted again. I just started taking Pentasa and prednisone a week ago. This morning I woke up with a lot of tightness in my chest and occasional sharp pain. It has lasted all day off and on. Does anyone know if this could be a side effect of the medication? I've never had that feeling before.


----------



## Daisy123

Feeling low. Rang my IBD nurse a couple of weeks ago as I was away and unable to go to the toilet. No bowel sounds whatsoever. Stopped eating for a couple of days and then I started going again, very watery. Went to GP and bowel sounds were fine but my stomach blew up like a balloon again. Emailed my IBD nurses because they had rung me back but I was unable to take the call. I asked if the strictures on the CT were pockets of gas. IBD nurse read me my CT report which said multiple small strictures in terminal ileum and transverse colon (I am not sure about the later I can't really remember). So back on low residue diet. I asked about laxatives and was told not to take senna. If I had to use something then movicol or laxido but they don't recommend it with strictures. I was also told that if the strictures weren't seen during the sigmoidoscopy it may well because they did to go far enough up. I did say this to the GI I saw last time but he insisted that it was almost a full colonoscopy. Still bloated and struggling between watery diarrhoea and constipation. So fed up and exhausted. I was told that surgery at this stage wasn't recommended, which is fine because I don't ever want another operation, and that it is the management of symptoms. I just want the buggers dilated so I can get some relief from this. :ybatty:


----------



## gemling

Hello all, now a new member of the club. I was hospitalised three weeks ago because of an intestinal blockage in my small intestines. Now back on the pred and doing EEN alongside it (my choice), but my IBD team don't think that Azathioprine is enough to stop the inflammation coming back and causing structuring in my small intestines, so they have been discussing infliximab (Remicade) or Humira as new treatment options. Not looking forward to it, but also don't want surgery or to go through a blockage again!


----------



## trebor-HI

Went to hospital with SBO just last week.  It was due to Crohn's and was located in the ileum.  The nausea and vomiting resolved but I still haven't moved my bowels.  Been 11 days already!  Anybody ever experience this?


----------



## Daisy123

Trebor, that seems an awfully long time not to go to the toilet. How long were you in hospital? It sounds like another obstruction to me.


----------



## Lam123

I agree, that sounds like a long time. Might be worth getting checked out.


----------



## trebor-HI

I was in the hospital four days total, Wednesday morning too Saturday evening.  So, as of this writing, I've been out of the hospital seven days but normal bowel movement has not yet returned.   Actually, just did an enema that produced first/moderate results.  Encouraging, maybe it takes time for normal bowel function after such an ordeal.  Has me praying for the first time in years!

My wife took me ER twice on Wednesday and was release both times after IV of dilaudid (aka hospital heroin) & nausea medication.  Went to the GI doc Thursday morning in severe pain.   He had me admitted into the hospital proper where I got two more doses of dilaudid and nausea medication and a nasogastric tube while "on hold" in ER waiting for a hospital bed to open.   

After being admitted into hospital proper Thursday evening I was administered IV cipro, flaygl and prednisone.  When I woke up Friday morning the pain and nausea were gone but they wanted to keep me on IV.  

If there's any moral to the story it's that I tuned down humira about a year ago.  I'm now regretting the decision.


----------



## Lam123

Just so I understand, have u had no bowel movement? Or not a proper bowel movement?


----------



## trebor-HI

Went 11 days with absolutely nothing...then, after I wrote my first note this morning, I finally produced a moderate amount.  So, maybe the crisis is coming to a close.


----------



## Lam123

Ok, that's good news. I have had a few blockages and I find sticking to things like toast and crackers help. Also, peppermint tea works great.


----------



## dave13

Fennel tea helps reduce gas.Fennel tastes like black licorice,which I like.


----------



## The Real MC

I drink a lot of tea but never heard of that one.  Will have to look out for it.


----------



## The Real MC

Had a minor blockage Saturday.  It followed a leftover meal.

The meal had cheese, likely ricotta and mozzarella.  No problems eating it in the restaurant, finished the leftovers two days later and had the blockage.

Cheese seems to be the common item with every blockage I have had so far.


----------



## dave13

The Real MC said:


> Cheese seems to be the common item with every blockage I have had so far.


It is good to know this.If you cut out cheese you can see how you react,or not react.Do you follow a particular diet?


----------



## Daisy123

So it continues. After four weeks I still look nine months pregnant. I took Movicol to see it would move things. But nope, made things worse. Went to GP and had bloods to check for inflammation, but no news so presume not. Emailed IBD nurse, email straight back. Phone call, emergency appointment arranged for tomorrow in clinic. Been passing blood on top of everything. Hoping that this will get sorted out. Back at work in two weeks.


----------



## DJW

Sorry to hear that Daisy123.


----------



## The Real MC

dave13 said:


> It is good to know this.If you cut out cheese you can see how you react,or not react.Do you follow a particular diet?


Not really on a diet, I focus on avoiding foods that trigger a reaction.  Just about every reaction followed a meal out, and cheese was the common trend.  Restaurants being a slim profit business are notorious for using processed foods, especially cheese.  

But if I order a sandwich with swiss or provolone, no reaction.  When I shop groceries I stay away from processed cheese (like american or cheez whiz) and avoid transfat and artificial sugars (you would be amazed how many foods contain that crap).  With that selection, I have yet to have a reaction with any cheese I buy from any grocery store - deli, block, dairy, shredded.  If I make my own meals at home, I have no reaction.

This episode exposed something new.  This was leftovers from a meal with no history of trouble before (stromboli, the real stuff not the folded pizza slices).  The fresh meal was never any trouble.  But after the leftovers were in the fridge for a couple of days, something must had happened to the cheese to bind up and cause a blockage.

You REALLY have to be observant with this disease.


----------



## Muppetgirl

Hi, hope it's okay to join you guys. The Real MC, sorry to hear you had a blockage. Daisy123 I know what you mean about the bloatedness. I dread that someone will say that as my fertility was destroyed by this dreadful disease. I hope you get some help at your appointment tomorrow. 

Can anyone tell me how likely it is that surgery for obstruction will mean another resection?


----------



## fozheart

Dave, Is Fennel tea in the regular grocery store, and how does it help with the gas?  MMmm... licorice sounds soothing!

Also- anyone else.... you know how regular people really don't understand how complicated things can be for us, and they think there is just one easy answer sometimes?  One day on my new job and already, my kind employer hands me a "list" of foods he googled that are "good for when I might have an obstruction."  Like as in "here.... just have some yogurt or chicken noodle soup!"  And voila.... everything will go back to being great in the blink of any eye!  I know that people just try to help us, but they really can't, when they don't even understand the severeness of what that is to us.

Sorry..... just crabby tonight!


----------



## dave13

Hi Carol-fennel should be available at any health food store.It comes in tea bags or bulk seed.The aroma is definitely black licorice,the taste,not so much so.It is enjoyable to drink,in my opinion.It helps reduce gas.

Daisy123-I hope all goes well today.Let us know how it goes.

The Real MC-I follow The Specific Carbohydrate Diet.We are all different and it seems to work for me.It is time consuming and you have to be uber vigilant,which can be hard for some.It seems to take more time and $$ to live and eat simply.wtf.

Welcome Muppetgirl-are you asking the likely hood of another obstruction after already having an resection?Or alternative procedures other than resections?


----------



## Daisy123

Sob. I think I am stuck with looking pregnant for the rest of my life! Strictures, so far down that I would need double balloon procedure under GA. I would need to get funding, so would take three months. Asked GI to prescribe Fortisip because my GP will only give me complan because it is cheaper. See how it goes, but I want the balloon procedure. But didn't feel could insist at the moment.


----------



## Muppetgirl

Daisy123 - I'm sorry to hear that. It's no fun being stuck. I hope that in time you can get the balloon procedure.

Fozheart - Oh yeah, amazing how many people out there are secretly medics...who knew!

Dave13 - Thanks. Yeah I had a resection previously. Currently experiencing obstructive troubles that will not go away. Surgery is on the table. They are optimistic it's adhesions rather than new lesions, so I was hoping I can get away without having to resect which really would not be practical for me. Was wondering how often this is the case when they go in to fix such things? I'd be interested to know alternatives too.


----------



## dave13

Muppetgirl-I'm familiar with the balloon procedure like Daisy123 mentioned.Perhaps other crohnies will chime in.


----------



## Muppetgirl

Can the balloon procedure be used for adhesion based blockages too?


----------



## fozheart

Hi Muppetgirl,

Sorry to hear that you are having problems.  I am wondering if they have done any tests, to help sort out if you do have new lesions or adhesions.  Also, where are your obstruction... in relationship to your previous resection?  I can only speak for myself when it comes to deciding whether or not to go in.  In my case, they do not want to do more surgery, because I had 3 very close together, and also because I have other health problems.  I think that part of the decision is whether or not your surgeon is aggressive or conservative too.  Hmm... I cannot for the life of me figure out why there is not a good test that can detect adhesions and scar tissue, when there are such fancy ones that show everything else! 

Oh... also, even if they go in and fix the adhesions, they will create new scar tissue by going in!  Just a lot of things to be weighed.


----------



## Muppetgirl

I totally agree. It can be so hard to find the right balance. I have also had multiple abdominal ops. I guess in the end I often make the decision based on my quality of life & it is really affecting me right now. Also had a few close calls where it temporarily blocked altogether & so I am frightened if I leave it, I will get carted in as an emergency. The situation in my pelvis is complicated due to gynae & uro disease too, so it's much better for it to be my team of specialists. They tried a colonoscopy but couldn't complete it. Scans don't show new lesions although smaller ones do not always show. I was thinking the exact same thing about adhesions and scans! Someone could make a lot of money designing a way to do that. I wonder if it's because they have no blood supply. How are you managing yours? Do you do the low firber diet?


----------



## fozheart

Quality of Life...... doesn't that sound dreamlike?!  Wow, you are going through a boatload of problems- the amount of pain you go through must be awful!  Your decisions must be very complicated, so yes- that is when the quality of life vs. longevity and risk come into play.  Do you have a good team of doctors?  Besides the colonoscopy, have you had any other tests, like a barium enema?  Also- have they tried treating your obstructions with steroids?  (the way you respond would hopefully give them a clue whether the source is inflammatory or adhesion/scar tissue.

As for me, things just go around in circles- never really an answer to things.  In general, I do a low residue diet, and when I have a really bad, painful obstruction/episode, I go to liquids immediately.  Sometimes I will stay on them for 3 or 4 days.  Recently I had a CT that showed new diverticula in my colon.  To prevent diverticulitis, you need to be on a HIGH fiber diet.  So... there is no right balance for me!  (It is hard, because my resection was due to perforation in the sigmoid colon.)

I have kind of just accepted things for what they are, but YOU need to find some answers!  Just keep on those doctors!


----------



## Muppetgirl

Yeah, my quality isn't the quality I was used to before this started but I guess thats the case for a lot of us. The current bowel probs are threatening to take away what little I have. I still have daily pain but on some days its better than it was years ago. I have a good team, gynae used to be at the healm. These days its more my uro and CR consultants but they are all good at discussing things & good surgeons too. I've had MRI & CT. The CT was one of the new ones where you drink oral contrast first & they insert a tube that pumps Co2 into the bowel while you are in the scanner. It gives a 3D 'fly through' of the bowel. Haha thats what we all need - to fly through our bowels! :ylol: I will ask about steroids. I'm not sure as endometriosis sets off an inflammatory response but I don't know its role in obstructions.

Gosh it must be so hard to go through it with your options limited in that way. How do you find the low residue diet? Do you have nutrition supplements alongside yours? I can see why your work colleague did your head in the other day! :ybatty: Oh no, its so unfair when you cannot win in that way. I really cannot stand the double binds our health/treatments leave us in sometimes. Are there any other treatments for diverticulitus? I'm so sorry it got to the point where you had a perforation. Will surgery ever be on the cards for you again?

Thank you for your support. Sending good wishes your way.


----------



## Daisy123

My understanding is that the double balloon Enteroscopy can go much further than the colonoscopy. It is similar to a pill cam but it can be used for therapeutic purposes. I have emailed my hospital to see how much it costs privately, not that I can afford it. I awake with pain again in the UK and it is now 3am.


----------



## fozheart

I am sorry you are in so much pain, Daisy!  I am sending good thoughts and prayers your way.

So Muppetgirl- I don't know much about endometriosis, or if it can cause obstructions.  That is awful that you have that complication plus the uro disease.  2 years ago, the cancer gyne surgeon took everything out of me... (all the girl junk!), due to high cancer markers.  I have to say that after the surgery recovery, it took a fair amount of abdominal pain away from me, which was good.  (Left more room in there for things to move around!)  UUhhh sigh.... I never even knew I had diverticulitis, until that surprise emergency!  With the diet, I don't do anything fancy, and Ensure is my only extra.  I can't afford much food, and certainly not supplements.  There are hardly any fruit or veggies that are allowed, unless cooked really soft.  Sometimes there is a surprise- a while ago my Aunt made a baked squash and gave me some.  It was all pureed and tasted wonderful, with butter.  It was a nightmare of pain- apparently high in fiber, and caused a lot of trapped gas.  I feel like we are all in the same boat... very limited and in limbo!  I am thankful that we have this forum to talk to each other.... thank you!

Oh... I never had the double balloon procedure, but I have had 2 flexsigmoidoscopies where balloons were put in to dialate a few narrowings in the colon.  They worked good at first, but only for a certain amount of time.  I tell people that the first balloon was yellow, and the second, pink!  yea.... crazy!


----------



## Muppetgirl

Sorry, I wasn't too sure of the role of inflammation in endo & obstructions. Endo lesions themselves definately can & do obstruct the bowel. Yeah its a bit of a free for all, five organs gone in their entirety, and sections of six others. Sorry you went through a mass organ walk out too. The diet is such a pain isn't it. Oh no, squash incident sounds a nightmare & for some reason I thought squash was ok ...oops! I was craving fruit over the weekend so gave in to a couple of spoofuls of fruit compote (hoped the cooking would break down the firbres). Yes its nice to know we're not alone. Everybody's so helpful & knowledgeble.

Daisy...thanks for sharing the info. So sorry you are in so much pain & being kept awake by it. Hope today/tonight was an improvement.

Wishing everyone a better blocked week than the last!


----------



## Daisy123

Thanks for all the support. Quick update. IBD nurse rang yesterday to say that my GI had presented my case during a case conference or something to that effect. I presume my surgeon would have been there. So now, at long last, they are doing something and I am scheduled for a barium follow through to see whether the strictures in my distal ileum are inflammatory or scar tissue. I am just waiting to hear but so relieved. Hopeful that either I can have dilation or go onto Remicade depending in the results. This came after a horrific couple of days of diarrehea and pain which kept me up all night and made me miss a work induction. I have been using mindfulness which has been really helpful, but so relieved.


----------



## dave13

Hopefully the sbft will provide some answers. :ghug:


----------



## Justanothercp

Good luck Daisy.  Keep us posted.


----------



## bunnygirl

:sign0085: Hi all! I'm new to the forum and still newish to Crohn's. Surprise diagnosis during diagnostic laparoscopic surgery (and resection of 11" of SB) following 2 years of "episodes". Hospitalized 2 times (1 week each) for SBO. Got a patency capsule stuck yesterday, ouch. Hopefully it will dissolve in the next couple of days. Surgeon who did resection said my jejunum was a patchwork of damage, so he removed what looked like the main blockage. Now, 3 months later, I'm still on liquid diet and still blowing up like a balloon and having pain when I eat. 3 Gastro docs say I should be on Remicade. Insurance company denied it as I have not "failed" steroids, immunosuppressors, etc. Has anyone else dealt with this? Do I need to take these drugs?? I'm losing ground, but docs seem baffled. BTW, is this a new thread? Help!


----------



## Daisy123

Hi Bunnygirl. It is different in the UK where I am from, but I haven't managed to try Remicade yet, it depends what is causing my strictures. Blowing up like a balloon sucks. If the stricture is scar tissue then medication won't help and there is the possibility that biologics could make it worse. Sorry you are having such a hard time.


----------



## dave13

Welcome bunnygirl

I had a resection in my jejunum as well.I am on Remicade,but for fistulas.I was taking Pentasa after the resection.

Are you seeing specialists? GI,colorectal surgeon rather than a GP,for example.


----------



## bunnygirl

Thanks for the replies! I have been on Pentasa since surgery (6/2/14), but haven't seen much (any?) improvement. I am seeing gastro docs, plus the folks at IBD research center. I haven't presented with any "usual" crohn's symptoms. No diarrhea, etc., just the SBOs. I have other autoimmune issues - Hashimoto's Sjogren's, etc., but they are pretty minor. All the other tests (CT enterography, x-ray, etc.) have been normalish, just some thickening of SB. Since the option of the pill camera is now gone (again), the only other option , to see/assess/monitor the damage seems to be the double balloon endoscopy, but that seems pretty risky given the strictures. Have any of you had the procedure??


----------



## syzygy

I also had primarily SBO's and few other symptoms, but doc is recommending Remicade based on imaging showing expanded inflammation and the atart of a possible fistula. 

Have they done a MR enterography to try to image the inflammation?  What about blood markers of inflammation (e.g., CRP)?


----------



## Daisy123

The double balloon Enteroscopy has been mentioned to me, but I have to have a SBFT first. I have had lots of dilations under ordinary scopes, and it seems this is no more dangerous.


----------



## dave13

I have had a recent SBFT. I have not had the double balloon enteroscopy.I had to look it up to familiarize myself with it.I would definitely choose to be put under for it. :ack:

What did the docs say about the scope and your strictures when they brought the procedure up to you?


----------



## Daisy123

They said they couldn't reach the strictures with an ordinary scope. I had a sigmoidoscopy which I was told was almost a colonoscopy because of how far they went during it. I have multiple strictures in my distal ileum, which they are now not sure are inflammatory or scar tissue. It was brought up at my last GI appointment when I again asked about dilation, but I was told that special funding would have to be applied for. I go to St Marks in the UK where they do it. So hopefully after the SBFT we can get something done.


----------



## dave13

Daisy123 said:


> They said they couldn't reach the strictures with an ordinary scope. I had a sigmoidoscopy which I was told was almost a colonoscopy because of how far they went during it. I have multiple strictures in my distal ileum, which they are now not sure are inflammatory or scar tissue. It was brought up at my last GI appointment when I again asked about dilation, but I was told that special funding would have to be applied for. I go to St Marks in the UK where they do it. So hopefully after the SBFT we can get something done.


The SBFT is a step in the right direction.My SBFT was an all day affair :thumbdown:,but they got good images and,really...what choice did I have.The dye wasn't that bad tasting,much better than the colonoscopy 'brew'.

Hopefully yours will be done in a timely manner...I think I have pokey guts. :yrolleyes: Good luck!


----------



## Dixiedoll23

After years and years of me telling every doctor I saw that SOMETHING was wrong and I go to the bathroom 20+ times a day, I'd always get the same response.Just take some fiber, and you'll be alright.I'm over weight, I have been all my life.I think that's why the doctors never took me seriously or suspected I could have crohns.They have a mental imagine of a slim, sickly looking person in their head, and I just don't look like that.I even told them I was pushing 300 pounds at one point in my life, and have lost almost 100 of that.Despite eating healthy, small meals, going to the bathroom constantly, and always on the move, I will never see 199 on the scale.I'm always just right there at 201/202.
After my 5th boy, a mid-wife finally decided to write me a referral to see a GI doc.His first response was I'm sure you don't have crohns but we'll check to make sure.
All of the tests were coming back positive.The last one they did was the camera pill, and I remember the nurse saying there was a 1 percent chance it could become stuck.Well it did, and I was off to emergency surgery and had 13 inches of small bowel removed.The GI doc went straight to the big dogs ad started me off on Humira.I've since failed that and have also failed Remicade recently, too.
Soo, now I'm pretty much in the same boat.Last month I was admitted to the ER after severe pain and puking.I told the doc there this felt like a blockage because I had one before.She didn't say anything at all about a blockage after the CT scan, just some inflammation.I wasn't in a very good hospital and seen no specialists the whole time.After pain meds and prednisone I was sent home after a few days.I made a follow apt with my new GI and he decided to do a scope.He could not perform the scope because he said he couldn't get it through I was so blocked due to a stricture.
Looks like I will have to have surgery again, but he said I was too young (33).I don't see another option though.There are no meds for me to take.The only thing keeping the blockage under control right now is the pred and I can't stay on that forever.My anxiety from all of this is out of control.I have a feeling they'll have to take more than they did last time for some reason.I have a GI apt tomorrow, and I hope I can get some answers.I am absolutely miserable.My food won't go anywhere.I feel like I'm 9 months pregnant all the time and the pain is un-bearable at times.
I'll keep everyone updated if I find out anything. 
xo


----------



## syzygy

I got my insurance authorization in the mail today, so looks like I am indeed joining "the club."  It was a good sign to me that I felt relief at seeing the letter.  (I'd previously been pretty apprehensive about starting a med with such potentially serious side-effects.)  Once I get a date, I'll be scouring the forums and picking people's brains about tips for the hospital.


----------



## Daisy123

syzygy said:


> I got my insurance authorization in the mail today, so looks like I am indeed joining "the club."  It was a good sign to me that I felt relief at seeing the letter.  (I'd previously been pretty apprehensive about starting a med with such potentially serious side-effects.)  Once I get a date, I'll be scouring the forums and picking people's brains about tips for the hospital.


Good news. Hope it gets things under control!


----------



## syzygy

Got my date for the first infusion: 10/17.

Still feeling relieved.  Thanks for the support everyone.


----------



## gemling

Glad you have a date, syzygy! Let us know how it goes. I had my first Remicade/Infliximab infusion yesterday. All went fine and still feel fine today. Just a bit tired, but when do I not feel a bit tired?


----------



## Dixiedoll23

After I saw my GI earlier this week, he decided to write a referral for me to see another GI and GI surgeon at University of North Carolina.So, I'll probably have a surgery date soon.I'm dreading the surgery, but at the same time feel relieved.I'm so miserable.I feel like I'm 9 months pregnant and in terrible pain all the time.This surgery took me forever to recouperate from! I had 13 inches removed last time, and I just have a bad feeling they will have to take out more.I've left my severe crohns un-treated now for over 10 months.Medications failed.Hopefully this will put me in remission finally and I can quit smoking!!


----------



## DJW

Hi Dixiedoll, I hope it brings great relief.


----------



## gemling

Hope you get seen soon Dixiedoll and that the surgery helps improve your quality of life. I know you've said medications failed, but have you heard about/discussed Entyvio? It's a new drug that targets the gut. Might be worth mentioning/asking about for the future if needed.


----------



## Daisy123

Hi Dixiedoll, sorry that you are facing more. I have had six resections, and still have enough bowel to function (I have to take meds to firm things). I stopped smoking before my last one, they refused to operate otherwise. Switched to e-cigs, still n them but much healthier than before. Let us know how your appointment with the surgeon goes.


----------



## Dixiedoll23

Daisy123 said:


> Hi Dixiedoll, sorry that you are facing more. I have had six resections, and still have enough bowel to function (I have to take meds to firm things). I stopped smoking before my last one, they refused to operate otherwise. Switched to e-cigs, still n them but much healthier than before. Let us know how your appointment with the surgeon goes.


Wow! 6?? (HUGS)

I quit smoking before with the help of the patch, and stayed smoke free for 6 months.I made the mistake of thinking I could have just one, and that "just one" turned right back into over a pack a day! I know better this time.

I KNOW smoking is bad for me.Last time I was in the ER I went a little over 24 hours without a cigarette, and when I did go down to smoke, as soon as I took one puff, I  immediately got that gut wrenching pain and had to find a bathroom.

I've had zero motivation to quit again, but I think I finally found the motivation I've needed.After my recent scope, the GI doctor told me if we didn't find a med that works I was going to live a very short life.Well I'm just 33 and have 6 boys and a husband that are my world. :rosette1:
I'll be in too much pain to think about going down for a smoke.Hopefully I'll be too drugged up to care! Haha


----------



## Dixiedoll23

gemling said:


> Hope you get seen soon Dixiedoll and that the surgery helps improve your quality of life. I know you've said medications failed, but have you heard about/discussed Entyvio? It's a new drug that targets the gut. Might be worth mentioning/asking about for the future if needed.



Thank you!
I'm not familiar with that, no. I'll ask this new GI doc about that since I'll be going to UNC and they tend to know more than my small town doc.


----------



## dave13

Good luck Dixiedoll23!!...with quitting smoking as well as your upcoming procedure!


----------



## syzygy

Good luck Dixiedoll.  That "short life" comment from your GI sounds a little callous.  I have kids too and they're a great motivator for my doing what I need to take care of myself.


----------



## gemling

Dixiedoll23 said:


> Thank you!
> I'm not familiar with that, no. I'll ask this new GI doc about that since I'll be going to UNC and they tend to know more than my small town doc.


There's a new forum for it over here if you want to read up a bit on it: http://www.crohnsforum.com/forumdisplay.php?f=319

Sounds quite promising!


----------



## dave13

gemling said:


> There's a new forum for it over here if you want to read up a bit on it: http://www.crohnsforum.com/forumdisplay.php?f=319
> 
> Sounds quite promising!


I checked out the thread,I'll bring Entyvio up to my GI and colorectal surgeon at next weeks appointment.Even if it's not for me,I'd like to know more about it.


----------



## The Real MC

Had a sudden departure from the forum...

9/25 had a REAL bad intestinal blockage at work.  In front of my boss.  Went to the plant nurse, she called the ambulance.  I've been having these obstructions about once a month this year but this was a BAD one.  CT scan showed I have developed a stricture.  Oh hooray.

They put the NG tube down my throat and admitted me to the hospital.  They slammed me with steroids, antibiotics, IV fluids and I had to wear that tube for three days.

Thankfully I avoided surgery.  However my pulse readings were low.  They put a telemetry on me so they could monitor my vitals round the clock.  They said during one night my pulse dipped in the 30s.  Blood test found that my potassium was low (yeah, being on IV fluids and no nutrients will do that...!)

They gave me potassium pills but the next morning it was still low.  So I had to have potassium administered by IV.  If you're one of the few lucky ones, you don't feel the potassium going in.

I was NOT lucky.  That stuff BURNS going in.  Had to endure it for THREE AGONIZING HOURS!!!  Thankfully I was discharged that day having no problem eating solid food and my piping was working.

At least it was a brand new hospital where all the rooms are private...!

After a six day stay in the hospital, I was lethargic.  The combinations of the NG tube draining my digestive system and the steroids (125mg 4x a day!!!) had completely drained me.  I had no endurance and was very unsteady on my feet.  My motor motions were off, I couldn't read, write, and if I typed on the computer I often hit the wrong keys.  Hard to walk straight and almost fell sometimes.  I didn't dare drive a motor vehicle in that condition.  Filed for disability from work.

Four days later I had really bad inflammation, thought for sure it was a full blown crohns attack and I was headed for surgery.  Thankfully it eased up completely while I was in ER.  Turned out I had too much starch in the pasta meal the day before (small pasta is safer).  After the NG tube the digestive system can't be stressed too hard so they put me on the bland diet  for ten days.  That did help to heal the abdominal muscles, as they felt like they were gonna snap back to inflaming.  I eased back into regular diet over the past week with no problem.

My cardiologist wanted to investigate the low pulse issue.  No medical history or lifestyle at all to explain it, nor should had the medicine caused it.  Wore a heart monitor for 48 hours, waiting to hear back.

The process of building my endurance and getting steady on my feet took a few weeks, was not expecting that.  After four weeks since that blockage I finally feel back to normal and I am returning to work on monday.  No diet restrictions, but I am cutting out processed cheese for good.  The meal before the blockage was a hamburger with this REAL stiff swiss cheese that tasted processed, and all of my blockages this past year followed a meal with processed cheese.  Which means avoiding restaurant chains and eating more meals from home.  When I told my doctors they thought it was a very plausible conclusion.

What an ordeal...!

Because I left work in an ambulance and was unable to drive for three weeks, my truck sat in the parking lot at work.  Word from my boss said that many people noticed that and were asking about me.


----------



## Grant

Wow, sounds like you've been put through the wringer alright. Here's hoping you can avoid surgery. What are they going to do about the stricture, Dilation??
Rgds
Grant


----------



## syzygy

I started Remicade Friday which went fine, but last might I had my first partial SBO in 6 months.  It was a relatively painful one for me, but some mostly nonproductive heaving seems to have cleared it.  I have a stethoscope at home and last night there were no bowel sounds but this morning things are piping along normally.  I called the on-call GI, who reassured me that this was too soon to be associated with Remicade. I considered going to the ER, but did not.  So frustrating!


----------



## The Real MC

Grant said:


> Wow, sounds like you've been put through the wringer alright. Here's hoping you can avoid surgery. What are they going to do about the stricture, Dilation??
> Rgds
> Grant


No mention of dilation or any further treatment of the stricture.  At the moment I am being cautious with my diet.  No relapse in the last three weeks at all.  Fingers crossed.


----------



## Ribo

The Real MC said:


> No mention of dilation or any further treatment of the stricture.  At the moment I am being cautious with my diet.  No relapse in the last three weeks at all.  Fingers crossed.


I know strictures can be caused by a mechanical event (such as scarring) which often requires some sort of physical intervention (which could be dilation or resection) or by inflammation.  If caused by inflamation it can often be treated medically - in the past a shock treatment of steroids has always addressed by strictures when they were from inflammation or thickening of the bowel wall.

So sorry to read of yor tough run there.  I know it can be hard but sounds like you're on the road to recovery.

One of the best things you can do is walking to build your endurance.  I started walking following my surgery in June and worked my way up to 2-3 miles.  I was hospitalized last month (again, twice....sigh) with SBOs and as I was recovering the nursing staff was amazed at my endurance cruising around the ward.  The walking definitely helped speed my recovery!


----------



## The Real MC

Ribo said:


> If caused by inflamation it can often be treated medically - in the past a shock treatment of steroids has always addressed by strictures when they were from inflammation or thickening of the bowel wall.


Interesting.  They slammed me with the steroids while I was on the NG tube, but have not had a CT scan since.  Won't know how the stricture reacted until the next time I need a CT scan.



> So sorry to read of yor tough run there.  I know it can be hard but sounds like you're on the road to recovery.
> 
> One of the best things you can do is walking to build your endurance.  I started walking following my surgery in June and worked my way up to 2-3 miles.  I was hospitalized last month (again, twice....sigh) with SBOs and as I was recovering the nursing staff was amazed at my endurance cruising around the ward.  The walking definitely helped speed my recovery!


I should do more walking.  I did as much as I could during the hospital stay, when I was discharged and during my recovery I didn't dare walk the road at home in the condition I was in.  Now that I am back to work I walk a lot during the day, should walk outside during lunch.  With DST in effect there isn't any daylight hours to walk before/after work.


----------



## PowerToolGuy

15 years ago suffered a Grapefruit sized abscess behind the bowel.  It was painful.  Had a couple decent years for a while.  8 years ago an abscess pretty much pushed its own way out through that scar on my abdomen (where they drained the abscess and also took the appendix) on its own.  Since then, it has developed into a constantly draining fistula that has been more nasty than some of the gore in horror films these days.  

Severe intestinal scarring at the terminal ileum and just inside the colon have left me not able to eat a good meal in 8 years.  Also have pretty bad narrowing in the lower Sigmoid colon.  Constant pain when I do eat which lasts days until I go to a liquid diet and let it pass.

Just been through another abscess drainage under an xray and after the tube 

came out I now have a baseball sized rock just behind my belly button again.  With this abscess I didn't wake up for 2 and a half weeks before Canadian Thanksgiving because I was popping painkillers like candy.  

My decision to finally have a total Proctocolectomy with removal of all the rear components has to be delayed until the infection is dealt with.  It's been a rough ride and my story (already told it in one of the other support groups) is long.

I can honestly say that everyone here who has shared their story are real troopers.  8 years of severity and 27 years of disease, I hope my Crohn's has only been colonic and I don't have to worry about this garbage again.  

I wish everyone here the best health possible and thank you all for letting me have an outlet for my thoughts.

Heading to emergency in the morning or to see my surgeon Tuesday because that's probably where I should be as I type.  I will be back soon!  Hope with only positive updates.


----------



## DJW

WOW...you are a fighter. 

Please keep us posted.


----------



## dave13

Keep us in the loop,PowerToolGuy.Wishing you the best of health as well!


----------



## PowerToolGuy

Later that night I had my abscess drain on its own.  So the next morning I didn't need the emergency, I called my surgeon and he saw me in the clinic in the afternoon.

This resulted in an immediate admission, CT scan that night and then they attempted to put in 3 drains yesterday afternoon.  They could only get 1 in.  The second one there was no pocket (the one that had drained) and the third they couldn't poke into it so they took biopsies.

I do feel better although in pain because of the length and complexity of trying to put the tubes in.  Now it has been decided to put in a pick line and feed me TPN.  I think Surgery is going to happen sometime in the near future because the surgeon was pretty happy with the fact that the belly looks a lot more normal now.  He will give it a bit on the TPN to settle things down.

Only saving grace is that because I insisted on not being in hospital, he is going to start off with some day passes this weekend and my TPN will all be done at night.

Nervous and scared are certainly the words of the day.  I am sure another update will follow soon, but my surgeon is off Friday and the weekend.  I am already familiar with the guy who is covering because he was the one that admitted me 4 weeks ago when the abscess first reared its ugly head.

Thanks for the well wishes and concern.


----------



## dave13

PowerToolGuy-nervous and scared are words we are too familiar with.It's good you already know the doc on the weekend shift.A familiar face can help,for sure.

So they didn't do a fistulotomy but they put in a a drain?

I'm sure you did not want the PIC line or TPN but you need the nourishment.It's good you are able to have day passes,get to leave the hospital for a bit.You can have your day before coming home for 'supper'.  Now your body will be able to get what it needs through TPN.I'm sure your doc was worried about procedures in the condition you were in.

In my opinion,as much as we don't want to have these needed operations,we have to prepare our selves the best we can,to better pull through them and start healing.I look at the TPN this way.

Keep us posted and good luck!!!


----------



## PowerToolGuy

Well, the PICC was put in for the TPN.  The purpose of the TPN is to nourish me because the Surgeon wants the bowel completely shut down.

Essentially, my large intestine is seeing its last days.  By not putting any food in me, the Surgeon thinks the abscesses will subside quicker and we can proceed to my surgery.

The TPN plus being on clear fluids is surprisingly not too bad.  15 hours of feed at night.  Yesterday afternoon I got my first day pass and I went home.  First thing I did was get a haircut which felt good.  I don't really feel hungry which is a good thing.

No fistulotomy with the drain.  Even my fistula in theory has single digit numbered days.  

If all goes as planned, the Colon comes out. The urologist and Surgeon get the fistula tract cleaned up (urologist because the Surgeon has to cut so close to everything that the fistula has mapped itself next to).  He places the Stoma in the right/perfect place, and then after all that, I can heal and live somewhat 'Normal' for the first time in 27 odd years.


----------



## dave13

PowerToolGuy said:


> Well, the PICC was put in for the TPN.  The purpose of the TPN is to nourish me because the Surgeon wants the bowel completely shut down.
> 
> Essentially, my large intestine is seeing its last days.  By not putting any food in me, the Surgeon thinks the abscesses will subside quicker and we can proceed to my surgery.
> 
> The TPN plus being on clear fluids is surprisingly not too bad.  15 hours of feed at night.  Yesterday afternoon I got my first day pass and I went home.  First thing I did was get a haircut which felt good.  I don't really feel hungry which is a good thing.
> 
> No fistulotomy with the drain.  Even my fistula in theory has single digit numbered days.
> 
> If all goes as planned, the Colon comes out. The urologist and Surgeon get the fistula tract cleaned up (urologist because the Surgeon has to cut so close to everything that the fistula has mapped itself next to).  He places the Stoma in the right/perfect place, and then after all that, I can heal and live somewhat 'Normal' for the first time in 27 odd years.


I guess only a crohnie can say that this is good news and mean it! I hope you have your 'normal' life we all seek.


----------



## PowerToolGuy

So I am now Day 6 Post Op and it was an ordeal.  I am resting at home.  Will give a little more in-depth update in a couple days.


----------



## Grant

Good luck PowerToolGuy, sounds like a helluva ordeal. Get well soon.
Rgds
Grant


----------



## dave13

PowerToolGuy said:


> So I am now Day 6 Post Op and it was an ordeal.  I am resting at home.  Will give a little more in-depth update in a couple days.


Glad you are at home now.You have been through a lot and hospitals are not the place to rest.I look forward to your update.


----------



## Trysha

Good that you are recovering at home.
What an ordeal it had been for you but hopefully you will soon be more comfortable.
Had some of that myself this year so I know what you are going through.
Feel better soon
Hugs and best wishes
Trysha


----------



## MichelleE

I am hoping someone can throw some suggestions or thoughts on my symptoms.  I had a bowel resection done almost a year ago.  After initial few months healing period I had a couple months of feeling decent and the same pain I experienced before having to have my resection done (due to scartissue blocking part of small and large bowel).  Anyways, I have had 2 colonoscopys since and am clear of recurring inflammation (yeah!!) so my GI is now sending me back to surgeon as he feels another "bulky section" in my right side which is where the pain always is.  I am never hungry, only eat small meals as anything more than a bowl of soup causes serious pain, pain (maybe level 5) is constant and increases at times.  I am nauseated at times but no vomiting.  My bowels seem to function somewhat normally however with pain.  Doc is wondering if it is adhesions/scar tissue from resection surgery, appendectomy surgery, and/or abdominal tissue damage from seat belt from car accident.  I am not have the massive pain that many of you have experienced so am not certain that mine the same.  It has been a 3 year process and hoped that the resection was the answer.  Now I feel I am back to square one again.  HELP!!!!


----------



## The Mad Bagger

I just had my 19th surgery at Mayo Clinic & every time I get a surgery within a few months I'm in pain again, but I always have nausea & vomiting. They've removed so much, I got an ileostomy in 2010 & if I get anymore small intestine removed, I will need a permanent feeding tube. I always have abscesses, fistulas & tumors. Got diagnosed with cancer after my last surgery in August. You're getting pain for a reason & hope they find out why, sometimes its so hard to figure it all out. If I had to guess, you probably have another section of bad intestine or a partial blockage can cause these symptoms.



   Meds:
Cimzia   Iron
6MP.      Folic acid
Norco    Pottasium
B-12
Vit D


----------



## MichelleE

Oh my Mad Bagger, I can't imagine.  You must be an absolute trooper to go through 19 surgeries.  I have had my share of stuff to deal with, but nothing like that.  I got call today and have apt with surgeon on Monday, so am hoping for some answers.  It is so hard not to get frustrated.  Thanks for your comments.  This forum is so helpful even if just to know we aren't alone in the world!!  Take care of yourself.


----------



## Blazinsquad

Jennifer said:


> I'm bumping this thread up as the issue seems to be popping up a lot on the forum lately.


Hi jennifer,

How long have you been taking klonopin for?


----------



## Justanothercp

How often do most of you have SBO flare?  I've had about 5 in last 5 months. But I feel pretty good between bouts. I'm trying to decide if it's time to have surgery discussion with my md. I am maxed out on maintenance Meds, so can't really adjust those. 
Any input would be appreciated.


----------



## DJW

I was getting them weekly. If never looked forward to surgery as much as then.


----------



## Justanothercp

DJW said:


> I was getting them weekly. If never looked forward to surgery as much as then.


Thanks DJW. 
A couple questions, if I may. Were you still functioning when you were getting them weekly? (Ie eating, holding weight, working) How long ago was your surgery? You doing well since then?  Were you able to decrease Meds after surgery?


----------



## The Mad Bagger

MichelleE said:


> Oh my Mad Bagger, I can't imagine.  You must be an absolute trooper to go through 19 surgeries.  I have had my share of stuff to deal with, but nothing like that.  I got call today and have apt with surgeon on Monday, so am hoping for some answers.  It is so hard not to get frustrated.  Thanks for your comments.  This forum is so helpful even if just to know we aren't alone in the world!!  Take care of yourself.


Hope your appointment went well today!! I spent the day at Northwestern hospital in Chicago, my Mom got her 91st chemo, so she's where I get my inspiration & we both are warriors. Its so nice to be on this forum & to hear other stories & similar problems. My biggest problem is finding a local GI, having a hard time finding a Dr to take my complicated case, but my old employer Dr Johnson just referred me to a friend of his that loves complicated cases. My anxiety is through the roof!


----------



## The Mad Bagger

Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?


----------



## DougUte

I have not had uveitis but my ophthalmologist is on the lookout for it because I have Crohn's.


----------



## Ribo

Justanothercp said:


> How often do most of you have SBO flare?  I've had about 5 in last 5 months. But I feel pretty good between bouts. I'm trying to decide if it's time to have surgery discussion with my md. I am maxed out on maintenance Meds, so can't really adjust those.
> Any input would be appreciated.


I was hospitalized something like 15 times in a two year period when I finally met with a surgeon.  About 9 of those were bowel obstructions, others were complications of Crohn's plus two bouts with pneumonia brought on by my med regimen at the time.

My resection kicked me into remission and I've felt fantastic for the past six months.  I have no idea why I waited so ong, except that my old GI was apparently an idiot.

My surgeon, who I would recommend to anyone, came into the exam room and said something along the lines of "15 hospitalizations? That's crazy." he scheduled surgery the following week and, though the recovery was rough the first few days, it changed my life.  I know that won't apply to everyone and every case, but if I had it to do over again, after the third obstruction I'd have been consulting with a colorectal surgeon.

At the very least, if you've had five true obstructions in five months, you should be seeking a second opinion.


----------



## DJW

You can ask anything you wish. 

I wasn't able to function. I lost a lot of weight. Had to go on a no fiber diet.  My surgery was in May two years  ago.  After surgery I went on imuran in an attempt to stop a flare. Unfortunately it wasn't enough and I started remicade last September.  

When I was first diagnosed none of the meds work. I eventually got into remission after surgery.  At that point I stupidly declared myself done with doctors and meds. I was extremely lucky to have a long 20 year remission. I would NEVER recommend that. I started  flaring a few years back and have been since then.


----------



## DJW

Justanothercp said:


> Thanks DJW.
> A couple questions, if I may. Were you still functioning when you were getting them weekly? (Ie eating, holding weight, working) How long ago was your surgery? You doing well since then?  Were you able to decrease Meds after surgery?


I should have quoted your post. The answer is above.


----------



## Justanothercp

Thank you for all your responses. 
I have had one resection about 13 years ago, and it was very apparent that I needed it.  Now, I'm on Remicade, Lialda, Budesonide, omeprazole and supplements; I also eat a Low inflammation Paleo diet.  So my partial obstructions seem purely mechanical (not inflammatory).  I have only been hospitalized for one such episode in the past 3 years.  Usually (and I know this sounds crazy) when it starts to onset, I make myself throw up as much as possible, and then I lay upside down on an inversion table for about 10 min and it is very painful, but the anti-gravity seems to loosen things up.  I envision it doing kind of what an ng tube does as far as decreasing the pressure where the clog is and then letting stuff start to slide through.
Problem is, it just seems to be happening more frequently....


----------



## edentenley

The Mad Bagger said:


> Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?


I had uveitis as an initial symptom of Crohn's...but mostly because my Crohn's disease was undiagnosed for three years. The uveitis was HORRIBLE though...very painful.  I hope you recovered well...topical steroids work wonders!  

I also had a flare up of my uveitis when I first obstructed....fun stuff.


----------



## UnXmas

I figured I'd add my blockage stories here. I've had one instance of ileus and one blockage of the small intestine.

The ileus was a complication of surgery. I felt quite well for a couple of days after the surgery. Then I started getting stomach pain and nausea, and although I'd been eating since the day I had the surgery, my stoma had not yet started working. My surgeon was away sick, and the doctor covering for him put a camera scope into my stoma and a catheta and decided that my digestive system was just slow to wake up and made me drink some disgusting laxative solution. I wasn't vomitting so he missed the ileus diagnosis, as vomitting is a key feature in most cases. I was in pain, I'd had no painkillers since opiates slow the bowel. I was in agony after the laxative, there was still nothing coming out of my stoma, and a nurse looked at my stomach and worked out I had ileus because it was so massively swollen. I'd also not been able to pee for two days (I have bladder problems anyway). An X-ray confirmed the diagnosis. They gave me diazepam to relax my abdominal muscles, but as soon as they'd given me an NG tube and aspirated all the bile from my stomach, the pain relieved considerably. I was told to chew gum to stimulate my digestive system, and I could have liquids and a little food. The ileus resolved after around ten days.

The small intesine blockage I had was the result of very complicated things going on, so I'll skip the causes and go straight to the symptoms. For weeks before it happened, I couldn't face eating. I always have a very poor appetite, but usually there's something I'll have a craving for. Then one day, every time something came out of my stoma, it caused a sharp, pinching sensation. I thought my stoma may be a bit blocked as I had no output, but then in the afternoon it produced some, so I figured it was fine. The next morning my stomach felt ok, no more pinching, and I ate breakfast. Then mid-morning my stomach just started hurting and I felt so bloated and swollen and just had this knowkedge that something was very wrong. We went to A&E and I was admitted immediately. After that came NG aspiration, x-rays, bowel perforation, emergency surgery, and a whole load of complications.


----------



## chirpy

looking for advice: 

stricture of ileum found 25 yrs ago.  crohns
put on b12 injections 25 yrs ago
no other meds, no surgeries
for all of these years have put up with obstruction pain 1-2x a yr
no complications,  no fistulas,  
have managed diarrhea all these years by watching what when and how much I eat and put up with some of the inconvenience as just don't like meds

I am really tired of the pain.. even if its only 1x or two x a year,  as I get older, 59,  I am just tired of it.... stopped going to er years ago when they would not give me anything for pain and said come back if it gets worse,  like it could get any worse... you all seem to understand the pain..... 

anyways,  last fall saw a GI Dr..said he only did meds and would put me on humira or Remicade... I said no.... for only 1 or 2 incidents a yr did not want to go to such extreme
meds,  he said to find another dr

well,  just finished another pain episode... have convinced myself ok,  next time will go to the er... 

but.... knowing what you all know about the different meds,  and what you all seem to be taking,  nothing seems to stop the obstructions

I have thought about just cutting out the stricture,  but sounds like the adhesion's from the surgery just provide another source for an obstruction. 

I just don't see meds being of help in dealing with only one or two episodes a year ... maybe you all feel and think differently? 

thanks in advance for your inputs


----------



## Grant

Hi chirpy, IMO you've a time bomb inside you waiting to go off in the way of possible perforation which is very very serious. I'm not sure what advice anyone can offer you because you dont like meds. I can only say you need meds to try & stop the vicious cycle. If it was me I'd be speaking urgently to a Gastro Specialist.
Rgds
Grant


----------



## chirpy

understand about the time bomb... but....
Have your meds stopped or prevented your obstructions?


----------



## peluchde

Chirpy,  my obstructions have not magically disappeared, but after 5 in one year that required hospitalizations and a trip to the Mayo Clinic, I started taking Humira.  I was fine for 4 years, but it has stopped working and I had another obstruction.  Now I'm on Imuran and hoping it works.  My sister died at age 44 from an obstruction that perforated.  Please don't take that chance


----------



## Layla

After 10 or so years of obstructions, some of which required a trip to the ER or a hospital stay I had the strictures removed last September. I'm now on Humira which is supposed to prevent any further strictures from forming, by preventing inflammation which in turn creates scar tissue which causes the obstructions.
Like you, I wasn't on medication before the op but that was because I was misdiagnosed as having UC rather than Crohn's. Now we know what it really is, the aim is to prevent any further issues with medication.

I cannot tell you how great it feels to not have to worry about getting an obstruction with every suspect bite of food!
No idea how long it will last of course but for the time being it's fantastic. Maybe that is the way forward for you too? Or in your case if the strictures are due to inflammation rather than scar tissue you may even get away without a resection first. The only way to find out is to try the medication....


----------



## UnXmas

peluchde said:


> Chirpy,  my obstructions have not magically disappeared, but after 5 in one year that required hospitalizations and a trip to the Mayo Clinic, I started taking Humira.  I was fine for 4 years, but it has stopped working and I had another obstruction.  Now I'm on Imuran and hoping it works.  My sister died at age 44 from an obstruction that perforated.  Please don't take that chance


I'm very sorry for your loss, peluchde.

I also had a perforation result from a blockage, it was the most serious medical problem I've ever had. Is there a specific reason you want to avoid medications, chirpy? Is there another treatment option you have in mind?


----------



## Grant

chirpy said:


> understand about the time bomb... but....
> Have your meds stopped or prevented your obstructions?


I've been on Humira since Dec.2010, now the problem for me was I had surgery in August 10 & by the end of Sept 2010 my CD was reoccurring. It took until Dec that year to get me scoped & then onto Humira. Damage already done sadly & a further surgery was required for another stricture in May 2012. Since then its been Humira all the way until this year when I had 3 infections in the space of 4 months & for a month of that I couldn't inject Humira. Well guess what, my CD came roaring back & sadly I think I've another stricture forming. Due to be scoped soon.
So Humira does work & work well. You mustn't leave it chirpy, it could cost you your life.
Please seek help
Best Wishes
Grant


----------



## chirpy

thanks all for your responses. 
Peluchde, so sorry for the loss of your sister. 

The side effects of drugs scare me.  My symptoms are mild,  I have had the same stricture for ever, no changes, so if the side effects of the drug appear to be worse than my symptoms, and they don't stop obstructions,  why change? 

My only complaint is the pain 1-2 x a year,  why go thru months of drug use for only these not so often episodes.  

In my past discussion with Drs about we could try this or that drug, it just gives me the impression drugs is where they make the money and they have no idea what is going to work,  sort of a trial and error type approach.  

If my symptoms and inflammation were more frequent and I were having complications,  I would be more willing...but my decision would still depend on,  are the drugs going to give me more relief or more grief? 

thanks again for your inputs... now that the recent episode is over, it's sort of out of mind... will worry about it next time   but I am pretty convinced the next time I will go to the ER ... so that is a step for me

can you tell I don't like Drs, hospitals, ...smell of alcohol 

thanks again to all


----------



## Grant

But they do work chirpy. And this could end very badly for you & your loved ones.
Is it worth risking your life over?
Rgds
Grant


----------



## JenniLenni

Crohn's isn't a cut and dry disease. A drug that works for one person, may not work for the next. Crohn's has a mind of its own, and can be very stubborn. However, once you find the right combination of medicine, diet, and life style - you shouldn't have any obstructions. The more those episodes happen, the weaker that area is getting. Don't wait. 

Also, yes, Crohn's is expensive. The procedures to check up on it and the medicines. But both are needed. I have been very up front with my doctors about not being able to afford some of the medicines. I was sent home with nearly three months of free samples, to see if they helped and give me time to change my insurance. 

My insurance just sent a letter that it no accepts manufacture coupons for maintained medicines. (Aka... All of my Crohn's medicines!) I brought that to the doctor who was livid. I assure you, they don't like "the system" either. 

Unfortunately, there aren't enough of us needing these medicines to make it worth pharmaceutical companies' time and energy to make cheaper medicines. And, those that own the rights know they can charge whatever they want because we will pay it - because we want to survive and have a decent quality of life.


----------



## Gilliatt

Hi, chirpy. Strange about your doc. My history is similar to yours. No fistulas or anything like that, just strictures of the ileum. Not too aggressive, either. Slow progression for me, also, and about the same number of obstructions/year.

I wouldn't say I have the greatest doc in the world. Pretty standard fare, mainstream meds, tests, etc. Still, last time I saw him, we went over this very question. When I sat back and considered all the circumstances of my case—MRIs, blood work, infrequency and mild nature of obstructions, etc.—and decided not to go the biologics route, but to watch and wait, he said, "I don't think any doctor in my position could fault that decision." Interesting that his response would be so different from your doc's.

It's my body, you know. And there's no *one* progression for this disease. Some people have mild strictures for many, many years. In some ways, the longer you can go the better. At least I think so. Then when you finally succumb to the Humira (or the surgery), you really benefit from it.

Big caveat here, though. I'm allowing my doctor to test me regularly and to watch for signs of worsening/spreading/extreme dilating of the proximal ileum/and so on. I don't intend to let myself get to the point where I seriously risk a rupture. Well, of course it's still a risk. Heck, it's a risk even for severely sick people who are on drugs. But I'm not yet severely sick. (I should note, I have taken Apriso (mesalamine), which is a very mild topical drug with hardly any systemic uptake, but it seemed to have no effect.)

Hard choice to make. But the idea that you're bound to have *severe* complications and soon(!) if you don't take the strongest drug out there *right now* just doesn't hold up, IMO. Could be true. Might not be true.

But then... I re-read your post, and I think, well, maybe you *are* at that point. You have put off meds a *long* time. Argh! Tough choices! Crohn's does seem to be about those (tough choices) if it's about anything!

Best premises to you in working through your difficulties, chirpy. Let us know what you decide to do. Will be interesting to see how it goes for you.


----------



## Crohns Queen

The Mad Bagger said:


> Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?


I've been experiencing dry eye and inflammation. Was put on cortisone eye drops for a week and Bion eye drops 4x/day for a week after. Helped a lot.


----------



## sk12383

Hi all,

I wasn't sure exactly where to post this question but here goes:

Has anyone ever had an anastomotic stricture dilated and then injected with steroids?  My ileorectal anastomotic stricture was narrowing and to avoid surgery we elected to dilate it and also do 4 steroid injections into the scar tissue with intent to prolong the benefits.

In reality I'm totally miserable and way worse than before dilating.  Dilating in the past without the injection has always worked great.

Has anyone experienced something similar?


----------



## DougUte

I have not heard of a steroid injection into the scar tissue. I would do everything I could to avoid surgery. If your GI is OK with it I would probably do it.


----------



## Sonic Purity

Greetings,

I hope adding onto the end of this thread is OK. (This is my second post; if it’s in the wrong place, please move it.)

I have had hundreds of what i call “cramping events”, which, from having read this thread (i did read it all) seem to be a mix of partial blockages with a few full blockages. I am _very_ used to the pulsing, cycling cramping pains which go along with peristalsis (and the cold sweats and vomiting with the full blocks).

At the end of May this year, i had a new abdominal pain which i have _never_ had before. In the early morning, the pain suddenly engaged, like turning on a light switch, at a level on the pain scale of about 5. *It did not vary for about 7 hours*. It felt like someone was grabbing my wrist hard, with the intention of breaking it…and holding it…and holding it…and holding it. As suddenly as it started, it stopped. _Zero_ intestinal gurgling/movement, before and after, for hours.

Several hours after it thankfully stopped, there _was_ some restricted gurgling and movement, but less severe than i’ve had with other blockages. Nothing like it since. I do not have a fever nor any other issues that would indicate that something has perforated or fissured or whatever else.

Most people would have gone to the emergency room. If you read My Story (entitled My tl;dr Novel), you will understand why i did not go to the E.R. I tried to go into the local mountains to die, but it was too painful to try to get into clothes, so i took two Aleve (I _know_ that’s forbidden for IBD people, but my PCP knows and that’s what i do. Go read My Story), which dropped the pain from 5 down to 1-2 once it took effect. I called my mother, who lives across town. She was giving me a shoulder massage when the pain suddenly ceased.

Because i felt the pain across my abdomen in the same area where i feel my Crohn’s cramps, i’m thinking they’re related, but i have *no* idea why this one would be so wholly different.

Has anyone with any IBD ever had a pain like this? If so, did you find out what it was?

Thank you.

Best Wishes,
))_Sonic_((

*** Update ***
Saw my PCP in late June, a month after the event. I described it to him as above. He didn’t seem too concerned about it, to my amazement. Still nothing like it since. I’m surprised that out of everyone here, no one else reports having experienced something similar. But then, we seem to be dealing with a family of diseases, with everyone’s experience being different, so maybe i ought not to be surprised that i’m the only one.


----------



## anmonk

hi guys, i need some advice...
 From a span of 3 months i have been having severe obstruction i have had like 6 obstruction till today. i did not have any problem with obstruction but now i am finding really hard to control it. After recovering from one obstruction its a matter of 10 days when the next one strikes. during my first and second obstruction i was administered antibiotics to clear the obstruction but when the same thing repeated my GI did balloon dilation. But this too dint stop my obstruction from reoccurring. I dint go to GI since then, now whenever i have obstruction i dont eat anything solid for two days and then it gets cleared. The same story is been repeating from the past 3 months. i am really confused and irritated. i am not understanding how can i get it in control. My colonoscopy shows that my colon is good except one small portion which is creating complications. I have already undergone a surgery 3 years ago. Now i am scared if this part of colon will heal eventually by any chance or should i get it removed?? Currently, i am having severe pain on the left side of my abdomen, i am passing loose stools, and sometimes i pass only mucous without any stool. Has anyone had the same experience?? i am scared because i feel so many obstructions within a span of 3 months is unusual and the pain is really depressing. Some suggestions would definitely be helpful....


----------



## UnXmas

Has your GI recommended surgery? Or have you had a chance to discuss your concerns with a surgeon? Talking with doctors would be the place to start I think. But it does sound like some surgical intervention may be needed. You don't want to go on getting more obstructions, but you also need to know that if you do have surgery, it will take care of the problem. A surgeon who has seen your test results will be able to give you the best advice on whether this will be the case for you.


----------



## vivien walsh

im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien


----------



## Sonic Purity

vivien walsh said:


> im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien


Maybe check with your physician(s), in terms of anything to keep the soups and smoothies from flying through you. My PCP is big on soluble fiber: he has me taking two heaping tablespoons of whole ground flax seed meal in a big glass of water once a day (i do it first thing in the morning). Not an enjoyable beverage, but not too bad with some juice (usually a bit of lemon or mandarin lime from our back yard trees), and worth it to me to not be shooting stuff out. For my particular flavor of CD, that and a product called Isatis Cooling that this same doctor also recommended (non-prescription) do a lot to keep me impressively “regular”.

Hopefully with advice from healers who know your specific situation and possibly some experimentation on your part, you’ll find something.

Best Wishes!

))_Sonic_((


----------



## Layla

I would not want to risk taking _anything_ to slow things down if you have strictures. Metamucil landed me in hospital with a complete obstruction! ( I had to take the Metamucil as contrast for a ct scan)

After that episode I ate a lot of mashed potatoes mixed with various things. Hot smoked salmon if great but tinned tuna or very soft chicken breast or thigh also works. You can also mix in parsnips or other root veggies and a bit of preserved lemon for extra flavour. If you get bored with the flavour, enhance it with a bit of truffle oil or porcini oil and suddenly you have posh mash :lol2: If you can have dairy then cheese is also a good addition.

Fruit smoothies contain way too much fibre, the only fruit I had was banana, poached pears and similar very soft (tinned) and non fibrous fruits. Soups are great but again choose ingredients that are low in fibre even though you blend them to bits. No onion or beans, lentils or anything like that. My favourite soup is parsnip which is made with stock, parsnips, a potato for thickening and some cardamom for flavour, yummmm! But courgette also works. I used to eat that with a soft white bread to dip into the soup like ciabatta, that way it still feels like a meal, remember to chew well though.

Hope this gives you some ideas to tide you over until your op!


----------



## bunnygirl

vivien walsh said:


> im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien


Hi Vivien,
I had a bowel resection to remove a stricture, then found out there was a second stricture. For the 6 months between the surgeries I was on a full liquid diet. Not nearly as bad as it sounds. I lived on (and love) a smoothie with frozen banana, rice milk, and peanut butter. I added protein powder/vitamins as needed. I also drank my fair share of Ensure (Dark chocolate only - the rest are yucky). In transitioning to real food after surgery, I added spinach, yogurt and an occasional fruit to my PB smoothie. I also ate a lot of pureed pot roast (it's just soup in the end), pureed spaghetti, pureed whatever. I still eat a lot of soup (tonight was artichoke heart/lemon, last night was butternut squash/apple, etc). Find something basic that works and that you enjoy. It is temporary. Good Luck!!


----------



## Caitlin84

I had another colonoscopy on Weds. 5 weeks ago my stricture was 7mm, now it is almost completely closed. My Dr used the phrase pinprick. So that kind of scares me. As long as I'm having bowel movements, I know its not totally closed/turned into a blockage, right? I don't feel like I know enough about this. My Dr said if I start vomiting to go to the ER right away. Is perforation the biggest concern with a stricture/blockage?


----------



## Layla

Yes, as far as I understand perforation is the biggest concern. Has your dr discussed surgery or are you waiting for medication to kick in?


----------



## Caitlin84

I'm going to be starting Humira. The day of the colonoscopy he started the pre-authorization process with insurance.


----------



## Layla

Right. Well in the meantime be extremely careful with what you eat! I would suggest liquids only, maybe ensure or similar and do go to hospital when you feel you need to vomit.
I always thought what's the point, what are they going to do but an ng tube really does help and you really want to avoid emergency surgery. Hope the Humira is approved quickly!


----------



## Caitlin84

The idea of an NG tube terrifies me. They would have to sedate me I think, to put one in. I have a super sensitive gag reflex and lots of anxiety. I've been eating rice, cheese, bread--non-whole grain--I've never had to do a liquid diet before. Every time I feel nauseous though I get anxious--which makes the nausea worse of course. No vomiting yet though--I think I just have to make it until Tues morning.


----------



## Caitlin84

So apparently my problem is not so much inflammation as it is the stricture and Humira can make strictures worse. It can cause the stricture to completely close-which mine practically is already, and has been getting worse despite high doses of steroids. He is recommending surgery--since Humira could lead to emergency surgery, or needing surgery anyway. He thinks its inevitable. Of course they can't get me in to talk to a surgeon until next week. It feels like a conspiracy to keep me from working ever again. 

I'm bummed. Not to mention surgery is kind of scary, and I run the risk of the stricture closing in the meanwhile.


----------



## Layla

So sorry to hear that! 
I was in the same position and I can tell you surgery was a relief. I went on to Humira after the surgery because I still had some inflammation, the surgeon only took the strictures out, but I hadn't heard that Humira could make strictures worse.

Just stay on liquids until the surgery. I could have the surgery laparoscopically because it was planned, and emergency surgery would have meant an open surgery so it was worth the effort for me. Cross fingers your surgery will be quick and easy!


----------



## Patch

Well, after taking a while to decide, I finally elected to go ahead and have the stricture on my right side removed. I'm also on Humira, and it wasn't stopping the stricture from wreaking major havoc on my system. I'm not happy about having the entire right side taken out to deal with the stricture, but I can't afford to be ill and off work any longer.

The other concern is that I'll still have the stricture in my rectum, which can't be removed, only dilated. Hopefully if removing the other stricture improves my overall health, then the dilation (to be done the day before the surgery) will be more effective than it's been in the past.


----------



## lgpcarter

Sorry to hear that, Patch. No surgery for me yet, but have read posts from a lot of people who felt so much better after have resections and had many years of remission. I did have some success with a rectal dilation, which was done when I had setons placed and in my fistulas.


----------



## jmrw

I didnot know Humira caused strictures to get worse.  My doc said it may relax or fix it.


----------



## Caitlin84

jmrw said:


> I didnot know Humira caused strictures to get worse.  My doc said it may relax or fix it.


I can make it better, but in a percentage of patients it makes it worse first. Since mine is already so close to a blockage, we decided it wasn't worth the risk. If it closed they would have to do surgery anyway only it would be emergency. We'll save humira in reserve for the future.


----------



## Patch

Question for those who have had a resection surgery - about how long should I expect to be kept in the hospital following the surgery?


----------



## DJW

I've only been opened up for resection surgery; usually in 5-7 days. 
If it's emergency surgery all regular time frames usually go out the window.


----------



## Patch

Whoops, I should've specified, I'm having this done laproscopically. Not sure if that would affect the estimate.


----------



## DJW

I hear (from people here) time lines are quicker; including healing.


----------



## The Real MC

One of the common side effects of intestinal surgery is obstruction, caused by adhesives where the surgical cuts were made.  Not sure if laproscopical procedure includes that risk, but be on the lookout for at least two weeks and get to ER if you have any obstructions.


----------



## Caitlin84

Patch said:


> Whoops, I should've specified, I'm having this done laproscopically. Not sure if that would affect the estimate.



I had mine done laproscopically on a tues morning and was discharged thurs afternoon. I think that is pretty quick though. But I hit all my milestones early-peeing, pooping, keeping down food, etc. Initially they told me three nights.

I am 3 weeks post op now though and I feel a million times better. I feel like a human being again, its great.:dance:


----------



## Patch

Caitlin84 said:


> I am 3 weeks post op now though and I feel a million times better. I feel like a human being again, its great.:dance:


That's what I'm hoping for. Sick and tired of being sick and tired, so, I'm ready for this. Colonoscopy and dilation on Monday next week, resection surgery on Tuesday.


----------



## Justanothercp

Do most of you suffer daily with symptoms of stricture/narrowing?? It is a daily battle for me right now, I'm wondering if its normal or if i should start considering another resection....


----------



## The Real MC

Not daily, but 2014 I had problems with narrowing about once a month.  Finally isolated the foods that were triggering them.  Since I have eliminated those foods I have been a lot better.


----------



## Caitlin84

Justanothercp said:


> Do most of you suffer daily with symptoms of stricture/narrowing?? It is a daily battle for me right now, I'm wondering if its normal or if i should start considering another resection....


I was down and out for like a month and a half before my surgery due to my stricture. I feel a million times better since my resection and am so glad I did it. It was my first one, so I might have felt differently if I had to do them all the time. I'd had the stricture for years though, and up until this summer the symptoms weren't nearly so bad. You know you body, you deserve to feel good, make the decision that will do that for you.


----------



## ShirleyJH

Ive had 4 in the past year, one being last night. The first one Ive had I just layed on my bathroom floor for 8 hours puking. I swore I was dying, but it passed. The second time my mom called 911 and they took me by ambulance to the hospital, the freaking ambulance guy had to google what crohns was. Anyway I got there and I told them I was 99% sure I was having an obstruction. So they took blood and less then 10 minutes later (I dont think they even checked the blood work)  they came told me I was fine and wasting their time, even though I was crying it hurt so bad,  back gave me a tylonal and a generic gravol and basically told me to hit the road. My mom and I didnt even make it 3 minutes from the hospital I puked up the pills they gave me in a 711 parking lot. So I havnt gone back even though when it gets that bad I feel desperate to. What do the drs do for you guys when you go in?


----------



## Grant

Hi Shirley, poor you. Obstructions are so painful & for the Dr's not to take it seriously-well words fail me tbh.
My experience after 3 obstructions is they put an NG tube in asap to drain your stomach & take the pressure out of your digestive tract. Its not pleasant but it works. Strong pain killers are a must but really with all the vomiting they have to be administered by IV. Absolutely zero point in trying them orally-what were they thinking. I hope you forthwith get the treatment you deserve.
Hang in there
Grant


----------



## peluchde

Shirley JH,  I've had 10 hospitalizations for obstructions.  Only one ride by ambulance.  Once the pain was so bad that I passed out in the ER bathroom while vomiting.  Another time I fell out of the plastic chair in the waiting room and vomited all over the floor.  I always get admitted, get a dreaded NG tube and dilaudem for the pain. No food by mouth for a while.  I've stayed home for two of them, but it's really nothing to fool with.  My sister died at age 44 with a perforated bowel and ended up with sepsis.


----------



## hojinkorea

Thank God I found this support group!
I have been dealing with stricture/partial obstruction for the last four months.
I have been on Pentasa and Prednisone for one month and although it did improve my stricture, it hasn't really helped me out of it.  I'm getting some tests done to start on Humira and hopefully, I don't have to drag myself to ER again before I begin Humira (I've been hospitalized 3 times in the past 4 months because of partial obstruction).

What i do want to ask those of you who have been dealing with stricture is the current symptoms I have.  I don't have much pain but my gut makes alot of noise.. especially when it goes through the region below my belly button.  Everytime it does, I can feel it move..  I'm not vomitting, no diarrhea, have regular, formed bowel movement every morning and no pain but it is still uncomfortable hearing my bowel making that noise every few minutes throughout the day and feeling stuff move inside my abdominal region.  Anyone have similar experience??? And what should I do about this?


----------



## Justanothercp

hojinkorea said:


> Thank God I found this support group!
> I have been dealing with stricture/partial obstruction for the last four months.
> I have been on Pentasa and Prednisone for one month and although it did improve my stricture, it hasn't really helped me out of it.  I'm getting some tests done to start on Humira and hopefully, I don't have to drag myself to ER again before I begin Humira (I've been hospitalized 3 times in the past 4 months because of partial obstruction).
> 
> What i do want to ask those of you who have been dealing with stricture is the current symptoms I have.  I don't have much pain but my gut makes alot of noise.. especially when it goes through the region below my belly button.  Everytime it does, I can feel it move..  I'm not vomitting, no diarrhea, have regular, formed bowel movement every morning and no pain but it is still uncomfortable hearing my bowel making that noise every few minutes throughout the day and feeling stuff move inside my abdominal region.  Anyone have similar experience??? And what should I do about this?



My experience was just like yours. I ended up having a resection, and was much happier for it. I should have done it sooner. 
Good luck to you.


----------



## hojinkorea

Justanothercp said:


> My experience was just like yours. I ended up having a resection, and was much happier for it. I should have done it sooner.
> Good luck to you.


Ah.. I really want to avoid surgery as much as possible..  you don't think humira will help?


----------



## Justanothercp

Give it a try. If stricture is mostly inflammation, it may help. But if it is just scar tissue at this point, probably not...


----------



## hojinkorea

I wonder how much inflammation is required to cause scar tissue to form..  I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease.  Do you think that will be enough to cause major scar tissue that requires a surgery?


----------



## Justanothercp

hojinkorea said:


> I wonder how much inflammation is required to cause scar tissue to form..  I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease.  Do you think that will be enough to cause major scar tissue that requires a surgery?



Im not sure. But if you do have to have surgery, you will feel much better after.


----------



## hojinkorea

Justanothercp said:


> Im not sure. But if you do have to have surgery, you will feel much better after.


the only thing that i'm worried about is the statistic that indicates alot of patients who go through surgery eventually end up having to do another one..


----------



## Justanothercp

hojinkorea said:


> the only thing that i'm worried about is the statistic that indicates alot of patients who go through surgery eventually end up having to do another one..


True, but my surgery was 15 years ago. I still think I'll have to have another one someday, but quality of life has been so much better since my first one.


----------



## hojinkorea

Justanothercp said:


> True, but my surgery was 15 years ago. I still think I'll have to have another one someday, but quality of life has been so much better since my first one.


I will definitely keep that in mind..  thanks for your input!


----------



## Patch

I'm nearly 2 weeks post surgery now. I think the worst I've got going right now is an infection at my topmost incision site that they had to put me on antibiotics for. I hate taking antibiotics, they mess my head up.


----------



## hojinkorea

Patch said:


> I'm nearly 2 weeks post surgery now. I think the worst I've got going right now is an infection at my topmost incision site that they had to put me on antibiotics for. I hate taking antibiotics, they mess my head up.


I wish you quick recovery!  How long did you suffer with obstruction before you went ahead and got surgery?


----------



## DougUte

hojinkorea said:


> I wonder how much inflammation is required to cause scar tissue to form..  I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease.  Do you think that will be enough to cause major scar tissue that requires a surgery?


I am not a doctor, but I have personal involvement with Crohn's. I think you probably had crohn's for sometime before diagnosis. I know I did, and I think most of us have. Symptoms like obstructions don't just happen overnight. I had an obstruction that required surgery. It was the best single thing I have done in my crohn's journey. After surgery I felt immediately better. about nine months post surgery I was put on Humira. (The delay was due to the insurance company!!! - By the time I was put on all the other crohns med and had them fail me I had inflammation back at my surgery site.) Humira with help from Budesonide, have put me in remission for at least 4 years.


----------



## Patch

hojinkorea said:


> I wish you quick recovery!  How long did you suffer with obstruction before you went ahead and got surgery?


Thanks! I had that stricture slowly developing over several years, but it was only in the past couple years that it got bad enough to require taking action.


----------



## hojinkorea

Patch said:


> Thanks! I had that stricture slowly developing over several years, but it was only in the past couple years that it got bad enough to require taking action.


Did you try doing anything else before you went ahead and got the surgery?


----------



## Patch

hojinkorea said:


> Did you try doing anything else before you went ahead and got the surgery?


Not really. I'd been on biologics that had kept my Crohn's under control for a while, so it was manageable, but I screwed up by going off them for a while and had a flareup that brought the stricture to the point where surgery was the only real option to deal with it.


----------



## Brewtowncronie51

I'm just like soutfinch.thank for sharing. They tell me to stay calm and eat soft foods.If I throw up or get a fever Come straight in to the ER.


----------



## Christi

How does anyone know thats its an obstruction


----------



## hojinkorea

Obstruction usually comes severe intermittent pain that comes and goes.. for me, it was pain + vomiting.  Also, you usually won't be able to pass gas or have bowel movement when you have obstruction


----------



## Christi

Thanks i had very angry intestines yesterday and struggled to have bowl movements yesterday but managed with straining, today still angry intestines cramps that comes and goes but goes all over i feel as if i have to go but i did manage to have bowel movements today. I took a laxative to see if it would help.


----------



## Christi

Sorry i could not have bowel movements today


----------



## peluchde

You will know if it's an obstruction.  Lots of burping and nausea at first, pain is a very bad cramp where you are bent over the whole time.  No gas or bowel movement.  Then comes the vomiting.  It's really miserable.


----------



## SB7

I've had numerous strictures requiring a trip to the emergency room.  I've learned not to wait like I have in the past.  I use to put off going to the hospital because of the long waits, but after passing out a couple of times, once when they couldn't get a pulse on me and waking up on the big table with the bright light and my shirt cut off of me.  Unfortunately, when I came to, they gave me morphine which made me throw up violently(found out I was allergic), dilaudid has always been my friend in these circumstances. I believe eating the wrong foods for me, and stress are the two main factors in the onset of these visits.  Definitely a bad day when these things occur.


----------



## ronroush7

SB7 said:


> I've had numerous strictures requiring a trip to the emergency room.  I've learned not to wait like I have in the past.  I use to put off going to the hospital because of the long waits, but after passing out a couple of times, once when they couldn't get a pulse on me and waking up on the big table with the bright light and my shirt cut off of me.  Unfortunately, when I came to, they gave me morphine which made me throw up violently(found out I was allergic), dilaudid has always been my friend in these circumstances. I believe eating the wrong foods for me, and stress are the two main factors in the onset of these visits.  Definitely a bad day when these things occur.


I hope you are doing well right now,sb7


----------



## SB7

Yes, thanks.  I seemed to be doing fairly well right now.

 Hope you are doing well.


----------



## SB7

I was a little stupid yesterday. I ate some rice chips which never have bothered me before, only this time we put some grass fed aged cheddar which has never bothered me, on the chips. Well...I awake at 4 this morning and my abdominal region was in pain.  Was able to go the bathroom but the pain has continued. I did some breathing exercises which seemed to help manage the pain but it comes back after a few minutes. Will drink a little warm water to see if it will help. I was a little stressed yesterday concerned about having surgery Wednesday on my lip for squamous cell they found. Hopefully I can relax and calm down this flare soon.


----------



## dave13

Here's a 'should of known better' story. My wife and I went to the movies yesterday(Pride and Prejudice and Zombies)and I had some popcorn,with butter,of course. We shared a root beer,refined sugar for the most part. After the movie we had some local gelato,very good. Unfortunately,with more refined sugar. The movie was in the afternoon and I flared early evening. It lasted several hours,the wonderful pain of an obstruction. If it would of gone much longer I would of gone to the ER. I hadn't had one since last November,which I ended up going to the ER for. A reminder I have to be vigilant.


----------



## SB7

That's one thing I really miss. Eating popcorn and drinking a Coke at the movies with the wife. Hadn't done that in over 8 years. You could get a free refill of both popcorn and Coke. 

Doesn't look like this will ever happen again unless I want to chase it down with a few shots of Dilaudid.

Hope you're doing better.


----------



## DougUte

dave13 said:


> Here's a 'should of known better' story. My wife and I went to the movies yesterday(Pride and Prejudice and Zombies)and I had some popcorn,with butter,of course. We shared a root beer,refined sugar for the most part. After the movie we had some local gelato,very good. Unfortunately,with more refined sugar. The movie was in the afternoon and I flared early evening. It lasted several hours,the wonderful pain of an obstruction. If it would of gone much longer I would of gone to the ER. I hadn't had one since last November,which I ended up going to the ER for. A reminder I have to be vigilant.


Oh Dave! Popcorn. Really.  At least is was theatre popcorn and not some cheap microwave stuff.  (OK, I admit to eating popcorn. I do that, since I have been in remission.)


----------



## hcrum87hc

I was diagnosed with CD after an ER visit due to an obstruction caused by a stricture in my ileum.  After being put on Humira and Imuran, it's mostly been under control, but I went off Imuran for about a year due to my doctor's concerns with side effects, and I began flaring again.  I had scheduled a resection with a surgeon for this past December 2, but during a consultation at Duke, I was told that I could go back on the Imuran indefinitely since it was so effective.  So, I decided to give it a shot and postpone surgery indefinitely.

I've been on Entocort since November (which controlled the flare) and Imuran since the end of December.  Unfortunately, I wasn't aware of the time it took for Imuran to take effect and began tapering the Entocort way too early.  This led to the flare coming back with a vengeance.  I've gone back to the full dose of Entocort and upped my Imuran dose from 100mg to 150mg.  I'm getting better, but not to where I was before I started tapering the Entocort.  I'm afraid this latest inflammation is going to lead to more scar tissue and a resection.


----------



## Anne cochrane

I was wondering how everyone felt about the success of restrictions and because I have to work what the recovery time was like any inputs guys


----------



## ronroush7

Anne cochrane said:


> I was wondering how everyone felt about the success of restrictions and because I have to work what the recovery time was like any inputs guys


What type of medicines are you on?  Maybe you need something stronger?


----------



## ronroush7

I am sorry.  Were you talking sb


----------



## ronroush7

I am sorry .  What kind of restrictions are you on,?


----------



## Eridon2002

Anne-Did you mean resection?  If so I had 22cm(almost 9in) of my colon at the splenic flexure resected Feb 16th(with temporary ileostomy).  I was in the hospital for 10 days(they said it would only be 5-7 days but I had distension and nausea)  When I got home i started getting better much quicker than in the hospital.  I walked everyday and ate high protein meals to help with healing.  The week after the hospital i didn't work.  The 3rd week I worked form home on the computer.  The 4th week I was back in the field but took it slow(I'm in sales). 5th week I started traveling again.  I'm feeling sooooo much better than i did before the surgery.  I was getting horrible obstructions that made it almost impossible to do anything.  I have my ileostomy reversal May 6th.  Everyone's surgery goes different and recovery time can be drastically different.  Mine was laproscopic which helped.  Also, your time getting back to work will also differ on what type of job you have/how physically demanding it is.  The not lifting more than 10lbs for 6 weeks was rough.  I am now exercising, jogging, even back to the rock climbing gym(the harness is awkward with the ostomy).


----------



## ronroush7

I went in the hospital at the end of may because of pancreatitis.  I had the resection April six and was released April 22.  It was June before I could go back to work.  About lifting  I tried to take some trash out too early and it ended up all in the road.


----------



## Anne cochrane

Oh no I'm not on any meds was never offered any but I run my own business I can't take that much time off ill be speaking to surgeon in may


----------



## ronroush7

Do you have anyone that can help?


----------



## Anne cochrane

ronroush7 said:


> Do you have anyone that can help?


No I tend to deal with this myself I'm trying to get all the information I can before I go down the surgery route it just doesn't seem that successful


----------



## ronroush7

Sending support


----------



## Anne cochrane

ronroush7 said:


> Sending support


Thank you ill let you know how I get on when I meet with surgeon in may don't feel good tonight hope things are ok don't fancy another episode


----------



## SCCrohnie

After a couple of years on Cimzia and still being hospitalized for obstructions and a perforation, I'm finally going to have a resection near my terminal ileum next month.  

I'm excited because I'm just sick of being sick.  Living off oatmeal for months at a time has worn thin.


----------



## ronroush7

SCCrohnie said:


> After a couple of years on Cimzia and still being hospitalized for obstructions and a perforation, I'm finally going to have a resection near my terminal ileum next month.
> 
> I'm excited because I'm just sick of being sick.  Living off oatmeal for months at a time has worn thin.


Hoping the best for you


----------



## SCCrohnie

ronroush7 said:


> Hoping the best for you




Thanks!!


----------



## ronroush7

Welcome


----------



## SCCrohnie

I had my surgery a little over a week ago and while the recovery has been more difficult than I thought, I've been able to eat anything without distention or pain.  Sadly my appetite isn't there yet to take full advantage of this.


----------



## Grant

Hi SCCrohnie, my take on lack of appetite after surgery is its the bodies way of saying take it easy. After every surgery I've always had little or no appetite sometimes for upto 2 or 3 weeks afterwards & then one day I get up & the hunger is there. Given time it will return. Get well soon.
Rgds
Grant


----------



## SCCrohnie

Grant said:


> Hi SCCrohnie, my take on lack of appetite after surgery is its the bodies way of saying take it easy. After every surgery I've always had little or no appetite sometimes for upto 2 or 3 weeks afterwards & then one day I get up & the hunger is there. Given time it will return. Get well soon.
> 
> Rgds
> 
> Grant




Thanks for the tip Grant.  I finally got hungry yesterday a little over a week after the surgery.  But I'm not stuffing myself yet.


----------



## ronroush7

SCCrohnie said:


> Thanks for the tip Grant.  I finally got hungry yesterday a little over a week after the surgery.  But I'm not stuffing myself yet.


I remember shortly after getting home after my resection.  I asked for seconds.  It was too soon.


----------



## SCCrohnie

ronroush7 said:


> I remember shortly after getting home after my resection.  I asked for seconds.  It was too soon.




That doesn't sound like it was a pleasant experience.


----------



## ronroush7

No.  It wasn't.


----------



## Eridon2002

It took about 2 weeks for me to get an appetite after 22cm of my colon was removed. I had lost a ton of weight pre and post op so when I got my appetite back I was eating about 3000-5000 calories to gain it back.  Listen to your body, it will know when it's ready to handle to food.  Until then, just try to make sure what you do eat is good quality, high protein(needed to repair) foods.


----------



## janey27

Sailorluna said:


> I had pain and vomiting episodes (maybe they were partial obstructions and I did not know) on a fairly regular basis during the 6 months leading up to the obstruction  that resulted in my resection and diagnosis. During that time I had been assured that it was how my IBS "presented" what a crock.
> 
> same thing happened to me..was sick off and on for over two years  and the docs refused to take tests, saying I had IBS. Many times I .was told that since I was overweight at the time then I couldn't have anything more serious. It wasn't til I had my first Bowel obstruction that the surgeon on call diagnosed me with Crohn's dsease...In the past 20 yrs I have had about 2 dozen obstructions....some partial and some total


----------



## crohnattak

I feel swelling, pain before evacuating, occlusion?


----------



## ronroush7

crohnattak said:


> I feel swelling, pain before evacuating, occlusion?


Call your doctor.


----------



## darubo

Hello,
I had a partial bowel obstruction May 4 of this year and had to go to the ER; was admitted for 4 days to the hospital.  Had an NG tube for a couple of days.
I had been feeling better until a week or so ago, and I'm having a constant feeling of sharp gas pains; like I need to pass gas and can't or poop and can't.  I have passed gas and pooped, but it hasn't relieved the pain.  
I've never had pain be constant like this when I've had obstructions, and I've had several partial obstructions.
Can this be the partial obstruction flaring up again?  Usually it's off and on colicky pain with vomiting, and I haven't vomited with this constant pain.
When I take my oxycodone which is prescribed for back pain, it lessens the feeling of pain in my abdomen, but it doesn't go away.
Any comments or suggestions as to what I can do to make the pain go away are greatly appreciated.  
I tried to get an appointment with my gastroenterologist and she doesn't take my current insurance.  I've got to try to find a different doctor.  I live in Lufkin, TX, and there are 2 gastroenterologists in town (previous dr in Houston where I used to live).

Thank you,

Dana B.
really hurting and don't know what to do


----------



## ronroush7

Is there another gastroenterologist in a nearby city?  Maybe your should go to the ER, darubo.  Let us know how you are.


----------



## darubo

Houston is about the closest city with a lot of gastroenterologists, and I have a call in to a Dr DuPont whose name was given to me by my old doctor's nurse (old dr who doesn't take my insurance anymore).  I actually called his office Wed, Thu & Fri last week but got vm of the "new patient coordinator".  Of course he did call me on Thursday when I couldn't get to my phone before it went to vm.  I called right back but got his vm again...I called first thing Fri morning, got vm; then called again Fri afternoon and got vm again...no return call...guess I'll try again tomorrow.

My old doctor's nurse told me neither she nor Methodist Hospital who she's affiliated with, take ANY insurance that's from the Marketplace, which is the only insurance I could get.  I thought doctors couldn't refuse the Marketplace insurances (Obamacare)?  Guess they can...

I will post again after I talk to Dr DuPont's new patient coordinator -- I hope I can get an appointment soon...will have to drive 2 1/2 hours each way, but willing to do that for relief from this pain...

Thank you for your reply,

Dana


----------



## ronroush7

Welcome


----------



## DougUte

darubo said:


> Houston is about the closest city with a lot of gastroenterologists, and I have a call in to a Dr DuPont whose name was given to me by my old doctor's nurse (old dr who doesn't take my insurance anymore).  I actually called his office Wed, Thu & Fri last week but got vm of the "new patient coordinator".  Of course he did call me on Thursday when I couldn't get to my phone before it went to vm.  I called right back but got his vm again...I called first thing Fri morning, got vm; then called again Fri afternoon and got vm again...no return call...guess I'll try again tomorrow.
> 
> My old doctor's nurse told me neither she nor Methodist Hospital who she's affiliated with, take ANY insurance that's from the Marketplace, which is the only insurance I could get.  I thought doctors couldn't refuse the Marketplace insurances (Obamacare)?  Guess they can...
> 
> I will post again after I talk to Dr DuPont's new patient coordinator -- I hope I can get an appointment soon...will have to drive 2 1/2 hours each way, but willing to do that for relief from this pain...
> 
> Thank you for your reply,
> 
> Dana


If the voicemail game is still being done, I would probably go into an ER that takes your insurance. No reason to go through life with the pain of an obstruction. Been there, done that.


----------



## ronroush7

DougUte said:


> If the voicemail game is still being done, I would probably go into an ER that takes your insurance. No reason to go through life with the pain of an obstruction. Been there, done that.


Agree


----------



## darubo

Update from darubo -- 
Dr DuPont wasn't in my insurance network, so I couldn't see him.  So I called Baylor, which is where I was diagnosed and neither of the doctors I have seen there had any appointments available for over 2 months; were all booked up.  They offered an appointment with the Physician's Assistant on June 17 and I took it.
She (the PA) told me she suspects I have another stricture because of the constant pain and bloated feeling I'm having.  She wants me to have a CT enterography and an EGD and colonoscopy.
All of these tests were done a few years ago when they were trying to figure out what was wrong with me when I kept having attacks of severe abdominal pain and vomiting.  Each test result was "normal"; the CT didn't show the stricture that I had which was finally found by me swallowing a camera capsule; the colonoscopy and EGD were "normal".
While I felt grateful the tests were normal, I was so frustrated that they couldn't find what was causing the pain attacks and I'm afraid if I do have a stricture again, the tests are not going to show it because they didn't show it before.
Finally the camera capsule showed pictures in my terminal ileum of ulcers and a stricture.  The camera got stuck, which the doctor told me would probably happen, and in Oct 2012 I had a bowel resection and the stricture was removed.
I understand that the tests have to be done, but I am dreading trying to drink the prep -- it makes me vomit, and even just thinking about having to drink it makes me feel like I'm going to vomit.  I don't know if I'm going to be able to get it down so they can do the tests.  Any advice or suggestions?
And the PA said that if it is another stricture that of course I'd have to have surgery to remove it and that she would definitely recommend that I start being treated with a biologic once I'm healed from the surgery.  I had healing complications with the last surgery and had to have a wound vac, so I'm afraid of that happening again, not to mention trying to figure out which one of my sisters can be with me during the surgery and recovery, and I don't live in Houston any more; I did in 2012 when I had the bowel resection, but now I live a 2 1/2 hour drive from Baylor in Houston and the hospital where the surgery would be done.  My sisters both work full time and I hate disrupting their lives and being a burden to them...
I've been taking Entocort 9 mg a day since the 2012 stricture surgery, and having to be on a biologic scares me.  PA said that I should probably have already been on one since my body seems to want to make strictures...
So any information, suggestions, advice etc. would be greatly appreciated.

Thank you,
Dana B.
East Texas


----------



## DougUte

Hi Dana. 

Just so you know, the colonoscopy preps have got better since 2012. They still are not anything the normal person would enjoy drinking, but better than the old prep in used a few years ago. Hopefully the colonoscopy and the other tests will find what is going on. 

I had a surgery in Oct. 2010 where they removed 3.5 feet of small intestine and colon. After the surgery I was put on Humira. It has put and kept me in remission for 5 years this month. I have never had a side effect from Humira and I find taking it is easy to do. I know the list of side effects for biologics is scary, but I came to realize that Humira might double the chance of cancer, but the chance of getting a cancer is 3 out of 100,000 people. The biologic doubles the chance (6 out of 100,000). That is still a 99,994 out of 100,000 chance of NOT getting the cancer. So it is a matter of perspective. And I had a 100% chance of Crohn's Disease, which needed to be put under control. So I went for the biologic. And I am very glad I did. Don't let the biologic scare you.


----------



## ronroush7

DougUte said:


> Hi Dana.
> 
> Just so you know, the colonoscopy preps have got better since 2012. They still are not anything the normal person would enjoy drinking, but better than the old prep in used a few years ago. Hopefully the colonoscopy and the other tests will find what is going on.
> 
> I had a surgery in Oct. 2010 where they removed 3.5 feet of small intestine and colon. After the surgery I was put on Humira. It has put and kept me in remission for 5 years this month. I have never had a side effect from Humira and I find taking it is easy to do. I know the list of side effects for biologics is scary, but I came to realize that Humira might double the chance of cancer, but the chance of getting a cancer is 3 out of 100,000 people. The biologic doubles the chance (6 out of 100,000). That is still a 99,994 out of 100,000 chance of NOT getting the cancer. So it is a matter of perspective. And I had a 100% chance of Crohn's Disease, which needed to be put under control. So I went for the biologic. And I am very glad I did. Don't let the biologic scare you.


Agree


----------



## eleanor_rigby

How awesome would this be?!

http://www.ibtimes.co.uk/discovery-offers-hope-new-crohns-disease-treatment-1579380


----------



## ronroush7

Yes


----------



## SteffieB

I have had many bowel obstructions.  The first symptoms are pain and not passing any stool. Then, I usually vomit very forcefully and I don't feel relief after vomiting.  At that point, I know that I have to go to the hospital  ASAP.  

For my serious bowel obstructions,  I had an NG tube put down my nose for a few days,  and the obstruction passed on its own.  I haven't had a perforated bowel, but I know that if I keep getting obstructions,  it could happen.


----------



## lgpcarter

That's miserable, SteffieB! What is causing the obstructions? Is surgery a possibility? 

I had a bunch of partial obstructions and thankfully never threw up or ended up with an NG tube. Feeling smooch better after a resection in July.


----------



## jonique

lgpcarter said:


> That's miserable, SteffieB! What is causing the obstructions? Is surgery a possibility?
> 
> I had a bunch of partial obstructions and thankfully never threw up or ended up with an NG tube. Feeling smooch better after a resection in July.


Did you have laparoscopic or open resection?  I'm having open in a couple of weeks. Worrying about the NG tube as I had one 20 years ago and hated it.


----------



## dave13

jonique said:


> Did you have laparoscopic or open resection?  I'm having open in a couple of weeks. Worrying about the NG tube as I had one 20 years ago and hated it.


I had a combination laparoscopic/open surgery for my resection. I hope it goes well for you.


----------



## wnorm

Hi. I am a newbie to this support group. It looks amazing. I hope I'm posting in the right place. 
I am 64 and have collagenous colitis and mastocytic enterocolitis.  My d-predominant c.colitis went undiagnosed or treated for ~20 years. In 2013, I had uterine cancer. I'm ok. The surgery was enough to stop it.However, it caused pelvic floor issues.  In May/2015 I had Altemeier perianal rectal prolapse surgery. It failed not too long after. In Sept/2016 I had laparoscopy ventral rectoplexy with no resection. It failed 5 days after the procedure. I am waiting for a bowel motility test. It is not available privately in the entire province.
Because of the long waits for surgery and the dysfunction associated with having a prolapse, my severe longterm diarrhea changed completely to severe constipation. I have had to do a 1.5 litre water enema virtually every day since June 2015. In October 2016 I had to resume the daily enemas. Unfortunately, the enemas probably make my bowel function much worse. All the prescribed laxatives, softeners, etc. were poorly tolerated. I had to take about a litre of polyethylene glycol with electrolytes daily for a while. They caused severe rectal bleeding and made the prolapse much worse.MOM makes me feel like fainting, and so on. 
What is occurring  for the last number of months before and after the last surgery is that I have what I suspect to be a bowel blockage, I had one in April 2016 and the full bowel prep of Golytely eventually cleared it. However, it took about 6 hours or so to start working. I almost had to go to emergency which is ~a 10 hour wait here. Your number probably gets called after you drop dead in triage. 
Now the blockage is much worse than ever.I was supposed to stop all laxatives, enemas, etc while waiting for the motility test. However, I have been waiting almost 3 weeks.Now the constipation has probably turned into a blockage. I have terrible waves of abdominal pain that can last for hours. I can't sleep much. I had to start the enemas again. I had no choice. For the last  few days I have had to do repeat water enemies every few hours all day. Sometimes each procedure can last for 2-3 hours. Last night I was up until 5 am.For the first few days, I could only evacuate one very hard small lump + a lot of blood. I read that if you have a severe blockage you should not take a laxative because you can cause a rupture. If I even drank water it did not go through my gut. I cannot eat solid food. Even pureed infant food won't go down.I feel that if I go to the ER they won't believe me, because I don't look sick.It might be a case of "liar, liar, pants on fire". I am normal weight and have good colour (thanks to rosacea). Also, I never throw up. I didn't even throw up with severe nausea during both pregnancies.   

 I live in Montreal, so I may have to wait a very long time for any kind of treatment. I had very long waits for surgery. Socialized medicine here is the worst imaginable despite our very high taxes. Plus, the government has decided to stop the subsidy to all private colonoscopy etc clinics by Jan.2017. If a doctor wants to keep his private clinic open he has to opt out of Medicare (RAMQ) thus jeopardizing his OR privileges, etc .Therefore all private clinics will close shortly. It's a nightmare here. 

Bottom line (no pun intended) I don't know what is the smartest thing to do. I cannot reach the surgeon because, with my luck, he's under some witness protection plan.My GP is nice but probably would be of no help. I have tried virtually every med, food, etc known to man. Any suggestions would be greatly appreciated.


----------



## ronroush7

wnorm said:


> Hi. I am a newbie to this support group. It looks amazing. I hope I'm posting in the right place.
> I am 64 and have collagenous colitis and mastocytic enterocolitis.  My d-predominant c.colitis went undiagnosed or treated for ~20 years. In 2013, I had uterine cancer. I'm ok. The surgery was enough to stop it.However, it caused pelvic floor issues.  In May/2015 I had Altemeier perianal rectal prolapse surgery. It failed not too long after. In Sept/2016 I had laparoscopy ventral rectoplexy with no resection. It failed 5 days after the procedure. I am waiting for a bowel motility test. It is not available privately in the entire province.
> Because of the long waits for surgery and the dysfunction associated with having a prolapse, my severe longterm diarrhea changed completely to severe constipation. I have had to do a 1.5 litre water enema virtually every day since June 2015. In October 2016 I had to resume the daily enemas. Unfortunately, the enemas probably make my bowel function much worse. All the prescribed laxatives, softeners, etc. were poorly tolerated. I had to take about a litre of polyethylene glycol with electrolytes daily for a while. They caused severe rectal bleeding and made the prolapse much worse.MOM makes me feel like fainting, and so on.
> What is occurring  for the last number of months before and after the last surgery is that I have what I suspect to be a bowel blockage, I had one in April 2016 and the full bowel prep of Golytely eventually cleared it. However, it took about 6 hours or so to start working. I almost had to go to emergency which is ~a 10 hour wait here. Your number probably gets called after you drop dead in triage.
> Now the blockage is much worse than ever.I was supposed to stop all laxatives, enemas, etc while waiting for the motility test. However, I have been waiting almost 3 weeks.Now the constipation has probably turned into a blockage. I have terrible waves of abdominal pain that can last for hours. I can't sleep much. I had to start the enemas again. I had no choice. For the last  few days I have had to do repeat water enemies every few hours all day. Sometimes each procedure can last for 2-3 hours. Last night I was up until 5 am.For the first few days, I could only evacuate one very hard small lump + a lot of blood. I read that if you have a severe blockage you should not take a laxative because you can cause a rupture. If I even drank water it did not go through my gut. I cannot eat solid food. Even pureed infant food won't go down.I feel that if I go to the ER they won't believe me, because I don't look sick.It might be a case of "liar, liar, pants on fire". I am normal weight and have good colour (thanks to rosacea). Also, I never throw up. I didn't even throw up with severe nausea during both pregnancies.
> 
> I live in Montreal, so I may have to wait a very long time for any kind of treatment. I had very long waits for surgery. Socialized medicine here is the worst imaginable despite our very high taxes. Plus, the government has decided to stop the subsidy to all private colonoscopy etc clinics by Jan.2017. If a doctor wants to keep his private clinic open he has to opt out of Medicare (RAMQ) thus jeopardizing his OR privileges, etc .Therefore all private clinics will close shortly. It's a nightmare here.
> 
> Bottom line (no pun intended) I don't know what is the smartest thing to do. I cannot reach the surgeon because, with my luck, he's under some witness protection plan.My GP is nice but probably would be of no help. I have tried virtually every med, food, etc known to man. Any suggestions would be greatly appreciated.


I would still try ER.


----------



## wnorm

I appreciate your rapid response. My question: why exactly. My abdomen at present is not rigid or painful.  I am not throwing up. Why should they believe me?


----------



## ronroush7

Maybe if they do internal exams they can see the blockage.  I am concerned if you have a blockage it is going to get worse


----------



## wnorm

Don't they do X-rays or other scans first?


----------



## ronroush7

I believe so.


----------



## ronroush7

ronroush7 said:


> I believe so.


Let us know how you are.


----------



## wnorm

So far I seem to be ok. Had some diluted apple juice and diluted ensure about an hour ago. Feeling kind of nauseous, but ensure and apple juice make me nauseous anyway.My husband is up at the country house for the weekend. I'm not well enough to go there.He says that if there is a crisis he will drive back. It's only about 60 miles away.He's a dentist, but is running out of empathy for me. I guess it's a form of self-preservation.
 It's so kind of you to check up on me. Only my late mother would do that. She passed away in 2014 after having Alzheimers for 10 years.


----------



## ronroush7

I am sorry.  It is beside the point but my father has Alzheimer's.  I hope you get some help soon.


----------



## wnorm

Sorry to hear that. It's an awful disease. Both my parents had it at the same time. Thanks again for your thoughtfulness.


----------



## ronroush7

You are welcome


----------



## lgpcarter

Sounds like you are having a very rough time, wnorm. Hope things are a little better today. 

I always struggle with the "I don't look sick" "It's not that bad" or "they won't believe me" thoughts before I go to the hospital. I have had to go to the ER for a blockage before. They did an x-ray first to see if there was a blockage (there was) and then a CT scan to see the nature of the problem (inflammation vs. scarring). It was admitted and given IV steroids for a few days because it was due (partly) to inflammation. 

You shouldn't have to live like this. If your doctors won't respond, then I think you should go to the ER. 

Have you considered having your colon removed and getting an ostomy or j-pouch?


----------



## ronroush7

Yes.  If your doctor doesn't respond go to the doctor.


----------



## lgpcarter

How did it go?



jonique said:


> Did you have laparoscopic or open resection?  I'm having open in a couple of weeks. Worrying about the NG tube as I had one 20 years ago and hated it.


----------



## jonique

lgpcarter said:


> How did it go?


Surgery itself went well. Removed 11 cm of small bowel. Basically removed my old anastomosis and redid it. I had extensive adhesions so they removed them in order to get to the bowel.  

I went home after 8 days but readmitted three days later with post op ileus. Had ng tube inserted in the ER which was probably the worst thing I have experienced! D/c 7 days later. Been home two weeks now and getting better each day.  I see the surgeon this week and find out when I go back to work.

Wasn't pleasant but I'm crohns free now. Gastroenterologist wants to see me in 6 months for colpnoscopy to make sure no inflammation coming back. 

Thanks for checking in


----------



## ronroush7

jonique said:


> Surgery itself went well. Removed 11 cm of small bowel. Basically removed my old anastomosis and redid it. I had extensive adhesions so they removed them in order to get to the bowel.
> 
> I went home after 8 days but readmitted three days later with post op ileus. Had ng tube inserted in the ER which was probably the worst thing I have experienced! D/c 7 days later. Been home two weeks now and getting better each day.  I see the surgeon this week and find out when I go back to work.
> 
> Wasn't pleasant but I'm crohns free now. Gastroenterologist wants to see me in 6 months for colpnoscopy to make sure no inflammation coming back.
> 
> Thanks for checking in


Hope you stay in remission for a long time.


----------



## wnorm

lgpcarter said:


> Sounds like you are having a very rough time, wnorm. Hope things are a little better today.
> 
> I always struggle with the "I don't look sick" "It's not that bad" or "they won't believe me" thoughts before I go to the hospital. I have had to go to the ER for a blockage before. They did an x-ray first to see if there was a blockage (there was) and then a CT scan to see the nature of the problem (inflammation vs. scarring). It was admitted and given IV steroids for a few days because it was due (partly) to inflammation.
> 
> You shouldn't have to live like this. If your doctors won't respond, then I think you should go to the ER.
> 
> Have you considered having your colon removed and getting an ostomy or j-pouch?


Thanks for your thoughtfulness. I am actually in the ER now.I've been here for about 2 hours or so. Had a bad test. Waiting for the rest.Wish me good luck getting some treatment before the cows come home.


----------



## ronroush7

wnorm said:


> Thanks for your thoughtfulness. I am actually in the ER now.I've been here for about 2 hours or so. Had a bad test. Waiting for the rest.Wish me good luck getting some treatment before the cows come home.


I hope they get to you soon and you can get relief.


----------



## wnorm

ronroush7 said:


> I hope they get to you soon and you can get relief.


Thank-you.The warmth and support from your group means a lot to me..


----------



## wnorm

Still in ER
Been here for 10 hours.just had x-ray and blood test.If I was treated at a veterinarian clinic, I would already had the surgery and been sent home with a dog biscuit.


----------



## ronroush7

I hope they have seen you by now.


----------



## Km8367

What foods are good to eat if you have strictures or a possible partial obstruction? I am waiting for an MRI and ultrasound to see how bad the strictures are, and the waiting is awful. I have been drinking protein shakes and eating baby food but this is not enough to give me energy to do anything. Any help is appreciated. This is rough.


----------



## ronroush7

Km8367 said:


> What foods are good to eat if you have strictures or a possible partial obstruction? I am waiting for an MRI and ultrasound to see how bad the strictures are, and the waiting is awful. I have been drinking protein shakes and eating baby food but this is not enough to give me energy to do anything. Any help is appreciated. This is rough.


You might try a food diary to see what foods upset your stomach.


----------



## Layla

Protein shakes and baby food sound like a good start. For a quick solution I would add powerade or similar as they also contain electrolytes on top of all the sugar and they certainly help me. I find them generally disgusting so it's a last resort for me, which is probably what they should be, yuck! 

Longer term though I would ask your Gastro about getting liquid food prescribed, I've forgotten any brand names now but Nutricia do an extensive range, some of which are palatable. I had them in hospital as they couldn't provide me with anything I could digest other than Jello....


----------



## Jennabev

Can anyone suggest a good gastro doctor in the DC area? My dad has been dealing with a stricture and has been in and out of the hospital many times in the past two months. He’s lost a lot of weight and we’re worried about bowel perforations. He has celiac and a history of ulcerative colitis. Doctors now think he may have crohns. Twenty years ago he had a colectomy with an ileoanal pull through. Any suggestions are welcome.


----------



## cmack

Welcome, I'm not familiar with that procedure. Someone should know, hopefully they will be along shortly. There is a doctor directory section on this forum that may be of some use. Here is a link...https://www.crohnsforum.com/doctor/


----------

