Intestinal Blockage / Obstruction Support Group

Crohn's Disease Forum

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Muppetgirl-I'm familiar with the balloon procedure like Daisy123 mentioned.Perhaps other crohnies will chime in.
 
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.
 
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?
 
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!
 
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.
 
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.
 
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!
 
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!
 
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.
 
: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!
 
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.
 
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.
 
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??
 
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)?
 
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.
 
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?
 
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.
 
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.
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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!
 
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
 
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.
 
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.
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Good news. Hope it gets things under control!
 
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? :)
 
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!!
 
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.
 
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.
 
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.
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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
 
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.
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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. :)
 
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.
 
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.
 
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
 
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!
 
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
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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.
 
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.
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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!
 
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.
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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!
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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.
 
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.
 
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.
 
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!!!
 
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.
 
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.
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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.
 
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.
 
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.
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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.
 
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
 
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!!!!
 
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
 
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.
 
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 getting them weekly. If never looked forward to surgery as much as then.
 
DJW said:
I was getting them weekly. If never looked forward to surgery as much as then.
Click to expand...

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?
 
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.
Click to expand...

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!
 
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?
 
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.
Click to expand...

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.
 
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.
 
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?
Click to expand...

I should have quoted your post. The answer is above.
 
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....
 
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?
Click to expand...

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.
 
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.
 
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
 
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, 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
 
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....
 
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
Click to expand...

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?
 
chirpy said:
understand about the time bomb... but....
Have your meds stopped or prevented your obstructions?
Click to expand...

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
 
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
 
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
 
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.
 
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.
 
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?
Click to expand...

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.
 
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?
 
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.
 
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.
 
Last edited:
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....
 
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.
 
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
 
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
Click to expand...

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((
 
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!
 
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
Click to expand...

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

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