Folds?

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Keona

Keona

Joined
Mar 22, 2010
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Here I am again...really not much further along that I was when I first got here a little over a year ago.

I received a call from my GI's office today asking my weight and height. It has been 4 months since my last MRI and they were only now calling to tell me they found "folds" in my lower bowel and they want me to do a 3rd MRI. First one, way back last February they found 2 strictures. They haven't helped me very much at all so I have been self medicating and using ice and basically suffering.

When I asked what "folds" meant she told me she couldn't tell me because she wasn't a doctor or clinical nurse. I am getting really friggin' tired of that response.... if thats the case..then why say anything at all????.. just "we would like u to do another MRI"

Does anyone know what that means or what their experience was like if they had the same? I am in pain right lower pelvic area...back hurts a lot and I have night sweats. I also have chest pains sometimes but Im not sure if that has anything to do with it. I also have a rash on my hands... little blisters that pop.

Any insight would help as I have learned googling things just freaks me out.

thanks :)
 
Hiya Wendy

long time, no see! so it's lovely to see you again!
I'm not sure what lingo 'folds' is! Could it be narrowing? Dunno
If this was me, I'd tell em to shove their MRIs up their arse sideways! Then I would demand some decent meds, cos it sounds like you're partially blocked to me!
That LRQ pain, lower back pain, rib and chest pain, night sweats?
That was me last year, throw in some vomiting and diarrhea, dx = blocked!
The rash? your immune system's going haywire Wendy!
Get on the phone, or better still, go to A&E, get some fluids, and painkillers and some meds, you shouldn't be suffering like this without appropriate meds for obvious inflammation.
good luck and try not to worry
Joan xxx
 
hey Joan
great to see you are still here :) I remember you being one of the first to welcome me here so thank you for that :D

I dont vomit although I get waves of nausea. I thought it was my medication so stopped them (for 'depression') yet it continues. I have been off them for several months. I do have the ribbon like d. ..sometimes...and sometimes it is just the watery stuff. I automatically switch myself over to liquids - smoothies, etc -- not b/c the doc says but because I am listening (or trying) to listen to my body.

i should just go to the states.
 
Wendy!! Four months? I'm with Joan!! If they're just gonna do another MRI then make you wait for months for results, what good is it? Things change too fast for that nonsense!!

You've got to get better so you can go play in the snow:)!!

Really glad to see you back on here...it feels like ages since we've chatted :wink:
 
:mbh:

Wendy!!! I have missed you!

I'm so sorry to hear that things aren't going well.....:(

The only time I have heard them mention folds in relation to Matt is if there is thickening present. In his case they seem to refer to the bowel folds or loops. Sorry I can't be of more help.

Does anyone know what that means or what their experience was like if they had the same? I am in pain right lower pelvic area...back hurts a lot and I have night sweats. I also have chest pains sometimes but Im not sure if that has anything to do with it. I also have a rash on my hands... little blisters that pop.
Click to expand...

Not sure about the chest pain or rash but Matt certainly experienced right lower quadrant pain and back pain with his latest hospital admission and he had inflammation and an abscess.

I'm with Joan.............. get checked out, sooner rather than later.

Keep us posted Wendy and so good to have you back, I just wish it was under better circumstances.

Lots of love, :hug:
Dusty
 
Hey Wendy!

Sorry to hear things are at a standstill for you! Have you heard of diverticulitis? You can read about it here:

http://en.wikipedia.org/wiki/Diverticulitis

It has a lot of the same symptoms as IBD. I know it's not exactly "folds," but could show up funny on your MRI possibly and maybe "folds" was the closest thing they could use to describe it.

Either way, I am shocked that they haven't been more helpful when it's obvious there is something wrong with you. AND even after they found something odd on your MRI.

Based on your symptoms though I would agree with others and say you could have an abscess with the night sweats and skin rash (another sign of a messed up immune system). Have you reported all these new problems? Sometimes I feel like if we don't go out of our way to point out how crummy we feel, they just assume we are doing fine.

Hope you get some things going for you soon. You shouldn't have to self medicate. :(
 
haha - you guys are awesome!
It has been awhile!! I am really glad to see some familiar faces :) .. and of course new ones.

Dexky - I called my GP right after my last MRI in September. She told me it came back normal and that the role of the intestines is to constrict and contract to force the waste through. That perhaps maybe the strictures were a picture of the intestines doing what it was supposed to be doing. She told me my 2nd MRI was normal. At that point I started to think that maybe I have mental problems and it was all in my head so I just self-medicated and didn't follow-up with the GI. My GP had made an appointment with a gynaecologist - 3 1/2 months later I still don't have an appointment. She thinks I have endometriosis. I would LOVE to be playing in the snow - you know how much I like it :D I am very guarded about freaking out on any doctor b/c Canada's health care is S-L-O-W and I don't want to be put on a waiting list for another year just to get my foot in the door....when it is already in one (that I waited over a year for.)

All I know DustKat is the they found "folds" - whatever that means. When I finally did google it - it said one of two things. 1.) the intestines are supposed to have folds and 2.) the folds can refer to something called Intussusception - where one piece slides into the other like a telescope. Upon further reading, this typically is a paediatric issue and not usually with adults - although it does rarely happen. So, I still have no idea what the issue is. Something is going on b/c my body is telling me loud and clear.
I have to call my GP by 8:30 a.m on the 3rd to get in on the 4th. I will be taking someone with me. I will no longer go to an appointment on my own anymore as I have found they treat me soooo much better when someone is with me.

I was taking tylenol #1 which helped relieve the pelvic pain but didn't touch my back pain and perhaps made it worse. To the point where it dropped me to my knees twice.. momentarily paralysing. That hasn't happened for awhile. Now I am just taking tylenol but makes me feel crappy b/c I have to take so much of it.

DustyKat, when Matt was in hospital did he go in in agony or b/c it was going on for so long? Im waiting for almost a 'medical emergency" type state before I walk in. Im not in agony but it is definitely taking its toll on my life. I am doing next to nothing...

All I know is; when this is fixed...I am going to kick ass. I don't have the energy to do it right now - I forget what that use to feel like...to have energy. I am going to do something about this via complaint or something once it is fixed.

I am going to read your latest posts to catch up with how you guys are doing!

Thank- you for the replies :D
Love wendy :hug::hug::hug::hug:
(so glad to see there are new emoticons :D)
 
Wendy - I would consider an abscess a "medical emergency." OF course, it is unsure whether you have one or not. BUT...you asked Dusty if Matt went in because it had gone on for so long or if he was in agony. Well, for ME I thought I was going in to my gynocologist for pain that had bene going on for so long and I was sick of it. It ended up being a medical emergency when they found out I had an abscess the whole time!

What I am trying to say is that we often times convince ourselves that our situation isn't as bad as we think it is and keep from seeking medical help when we should have done it a long time ago. Based on all the symptoms you've described to us you deserve every bit of medical help we've all received! Don't let your doctors make you feel as if you aren't that bad! AND if you do have something like an abscess, it is a medical emergency because it could rupture at any point and cause sepsis, which is fatal.

My pain started in June of last year and I got to the point where I couldn't take it anymore by December. That's 6 months. I had a baseball-sized abscess in my gut by December. No idea how long it could have been in there forming, but a lot can happen in 6 months. It's already been 4 months since your MRI. Just trying to put things in perspective. :)

Oh...and before I knew there was anythign seriously wrong with me I was medicating with ibuprofen (which is totally bad for IBDers!) constantly and it wasn't even touching my pain. And ibuprofen is supposed to help alleviate pain better than Tylenol. So...yeah...take it for what it's worth. ;)
 
Hey Marisa,
you must have been responding the same time I was! They have never mentioned diverticulitus to me although I do have a friends who have it. I think b/c I dont experience pain on the left side, (only lower right) or under my belly-button, they have not looked in to that.
I sweat almost all day but wonder if it is due to the tylenol...and is different than the night sweats but makes me cold all the time. At night is major sweating. My doctor had asked me to consent to an AIDS test . At that point I was willing to do anything and to no surprise I do not have HIV or AIDS. I am also stunned that they do not do much of anything - which made me think it was all in my head. I have always been the type of person that if I get sick I just disappear... either in to the bathroom or in bed... saying next to nothing to anyone. The amount of "noise" I am making now is a big deal for me so maybe you are right there about if they don't hear from me they assume I am okay. The message they give me though when I did call was I have to wait and they seemed very snobby. I had a list of questions and didn't ask them all b/c I could tell she did not want to be on the phone with me and was a little sarcastic. She tells me I need to go to my GP for pai management...my GP tells me I need to go to the GI for pain management. I will be taking someone to my next appointment - when you haven't slept and when you are in pain... one can be drivin to tears quite quickly so I just avoid. From everything I have read I believe I have Crohn's and possibly endometriosis as well. Sometimes when I stretch (either up or down) it feels like something is ripping on my right side. They know all of this.... they tell me not to do this....
when you self medicate (I have been upfront about it) - they assume you are a drug addict seeking drugs. I have never resorted to getting my own narcotics although I could if I wanted to. I don't care what they do at this point so long as they fix it. I have a life to live...and I am not....
W.
 
I was having major night sweats before they found my abscess. It switched off with being super cold as well. Have you taken your temperature? Do you have a fever or are you just sweating? It said for diverticulitis right-sided pain can happen, though less frequent than the left-sided pain. Also, feeling hot with no fever is one of the symptoms.

I mean it is obvious to ME there is something not right. I don't get doctors sometimes. Well, nurses really because you don't always get to talk to the doctors right away due to the nurses.

Would your GP be able to call your GI and explain that they think the GI's office should be responsible for pain management? They shouldn't just be able to hand off the responsibility to the point where you get NO pain management!

Have you tried a different GP? I can't remember if this is a newer GP than the one you had before. I know you had a lot of difficulty getting your doctor to believe you for a while.
 
Perhaps. Perhaps not. Depending on how quickly they form one could have formed between then and now. Or your strictures could have gotten worse. I am interested to hear what your gyno has to say about all of this.
 
last year when I was getting night sweats I got a thermometer and yes, I was getting low grade fevers. Only in the evenings though. Although night sweats do not hurt I can not express how much I hate them... to the point where I will deprive myself of sleep just to avoid it :D

My GP was on sabbatical for a year in India...so I had seen an intern (total disaster - she told me she wanted me to see a psychiatrist).... and then I went to a doctor at school - she told me she thought I had endometriosis as well....I also saw a male GP there due to the recurrent oral thrush. I was so close to tears with him as he was very rude... asking me sarcastically "well, what do you think is wrong with you?" ...

I am going to get my thermometer out tonight and see if I am still getting fevers. Is it even possible to have an abcess this long? Remember I started complaining about this almost 3 years ago.. to date, I have tried 6 weeks of physio (doc thought I had arthritis due to the amount of running I did)... I took medication for arthritis - did nothing... tried birth control...nothing ... tried antidepressants.... nothing.... 2 MRI's - 2 strictures, and now folds... (2nd time they took a long time (6 hours) as they injected me twice with a lot of buscopan to relax my bowels.)...now I have "folds".... also the endoscopy (hiatel hernia and gastritis...which they havent followed up with yet either.).

I think I should fly all of you in and take all of you to my appointments!!
W.
 
Haha...I can imagine how all the doctors and nurses would react with such an angry entourage with you. I wish we could all come there!

I would suggest after hearing what your gyno has to say...if they still don't offer you much help...it's time to get a whole new medical group. I know things work differently in Cananda than in the U.S. But, you shouldn't be forced to see a group of doctors who agree there is something wrong with you, but refuse to investigate further and not help you manage the pain. It's unacceptable and you should find a group of doctors who agrees with that! I wonder if anyone on here lives close to you in Canada that could recommend their doc.

As far as having an abscess for that long - I started having back problems and sleep problems as far back as 2 years prior to experiencing abdominal pains and finally hospitalization. If you do indeed have some type of inflammatory disease, the inflammation could be causing you the sleep problems and if inflamed enough can tear the intestinal lining (fistulas), which ultimately cause the abscesses. I'm not sure doctors know how long it takes for abscesses to form. In my case at least, it seems it was more like a gradual process. Ever since they drained the abscess and put me on steroids I stopped having the sleep problems. And that was even before I started Humira. So, anything is possible!

There have been stranger stories on here, haha.
 
my temperature is 99.0 so low-grade but not a medical emergency. I am going to take it tonight as it seems to get worse for me at night.
I had to giggle as well at the thought of taking all of you with me... I can imagine the headline reports....

The nurse referred to it as Crohn's - I havent received anything in writing and the doc hasnt told me that. I am sooooo amazed by everyones amount of knowledge re: results of their bloodwork, right down to each individual test and the numbers involved. Im not even told the results of my bloodwork....

I am going to snap one of these days!
W.
 
I usually have to ask for my blood work results. But, I find it strange they don't mail you results from scans and imaging that you've had done. I am not sure if it works the same way there, but when I had all my CT scans done at the hospital they had a Film and Imaging department where I could go and pick up a CD that had all of the images I had taken while in the hospital. I still have it. It doesn't work in my computer as I'm sure it requires some special reader, but I didn't have to pay for it or anything since they were a part of my medical records I needed to take to my doctor.

I usually don't have to pay for copies of blood tests from my doc either, but I have to specifically ask for a copy otherwise I don't see/hear the specific numbers. I'm also provided with pictures from my colonoscopies to take home.

Sounds like some places in Canada need to get on the ball! Haha ;)
 
like I mentioned it took me over a year to get an appointment initially and then my second appointment isnt unitl over a year after the first (in March). The wait for my MRI's has typically been 6 mths. I dont get squat - even when I phone for results they act like I am doing something wrong and putting them out. I dont get mailed anything except the preparation for MRI and time/location. No results, no nothing....
that is why I am so afraid to fire this GI. It took me a year to get in (they said we have a shortage of GI's in Hamilton). I was also told he was one of the best - very thorough... he is also the president of the GI club in ontario or something... i posted an article about him last year. Im not impressed thats all I can say.

Marisa - did you have chest pains? (left side?)

HA! my DOG gets better treatment from her vet .... I was given my dogs x-rays and a print out of her treatment!
W.
 
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No, I can't remember having any chest pains. I can't remember positively. IF i did, it wasn't as awful as the abdominal pain. That was my worst symptom. And it got progressively worse and worse as time went on. If I had chest pains they were intermittent and nothing too worrying. But, I think it's possible to experience pain in other parts of our body as a result of inflammation elsewhere.

What kind of chest pain is it?
 
Hey Wendy,

Matt was in pain and to be honest I wouldn't have said it was a medical emergency, I don't know something just didn't sit right with me, plus he looked like crap. The bloods they took in emergency were the telling factor - WCC 33 and CRP 173. He had CT initially that showed inflammation but no abscess but they were pretty adamant that something else was going on so after 5 days of IV Hydrocortisone & Antibiotics he was rescanned and they found the abscess and then the connecting fistula.

Bit strange when I think about it............Roo always had the physical symptoms staring you in the face and the tests never supported it. Matt on the other hand presents quite well but the bloods say different. He was supposed to be discharged a week ago - felt good, looked good, no pain - then bloods came back elevated again and they found another small abscess. Bloody disease, you never know if you're coming or going!

Have you had bloods done lately?

Dusty. :)
 
Marisa
the chest pains are concerning. Sometimes it is a tightness and sometimes it is going really very fast even when I am laying down. Other times it is beating normal and then if feels like my heart beats longer than it should then goes back to normal. I wouldn't say its painful but it is a little uncomfortable. The thought is scary more than anything while it is doing it. I cant even get my pelvis area figured out so I am afraid to tell my doctor. When asked what are your symptoms?... thats a tricky question b/c I didnt know rashes for example had anything to do with crohns so didnt mention that to the GI doctor. Now I know... Yes, they are intermittent. It is not happening all the time but at least daily.

DustyKat
it just dawned on me that you are talking about your son... so now he has been diagnosed with crohns as well???? Wow...that really sucks to have to watch both children go through it!!! I am sorry to hear that. How is Roo?

Yep.. I look like crap. I wear my baseball hat all the time b/c I am too lazy/exhausted to do my hair. Simple things are too difficult.... I have to lay down a lot as I get waves of nausea. Just hits me but it is always with movement (getting up to get a drink or in the middle of walking my dog...)
I dont know what those numbers mean but have a feeling they're not good. :D I have been getting bloodwork a lot but I never hear anything about it. When I called they tell me the bloodwork was normal...then I get another requisition in the mail saying my doctor wants me to have them redone or something else done.
So is Matt in hospital right now or did they finally discharge him?

I have been eating a lot of turkey soup and the D remains... at least Im not constipated for 17 days like last time. I was close to a Guinness record though :) (I think it was 24 days)..but then again...who wants to be known for the longest constipated person??? I wouldnt report it to Ripley's hehe...

Marisa, my pelvic pain is getting progressively worse. I believed my doctor at first when she told me it was arthritis from all the running. then it moved from not only my hip but to the front and a little bit down my leg. The hip pain isnt 'as' bad but the front feels worse. Mostly where the crease where your groin area and leg/upper thigh meet. ...a little bit higher than there...(hope that makes sense.) I am really hungry but afraid to eat anything and feel too crappy to make anything.

They told me if I start to get extreme pain in my pelvic area /start vomiting (esp. green stuff) then go to emergency. It is a medical emergency. The pain isn't extreme and I haven't vomited. When it was extreme and I was vomiting... I went and they gave me gravol via IV and a pap test and sent me home. They knew I was being worked up for Crohn's... whatever that means...

...and told me to follow-up with my doctor.
I just want to get on with my life...
W.

P.S - DustyKat.... I got my dog a buddy - his name is Charlie (cat) and is also a rescue.
 
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Awww that's so sweet about Charlie, good on you! :)

Yeah, it sucks big time about Matt and I sure didn't see it coming either. He was diagnosed very quickly, thanks to our experience with Roo, and I thought we had caught it early and would knock it on the head fast but that sure didn't happen. He was diagnosed 1st December and was admitted to our local hospital on the 17th December and discharged 24th Dec. He didn't really pick up and we came down to Sydney for the kids to go to the cricket and Matt ended being admitted to hospital again on the 6th Jan and was discharged yesterday 28th. On the up side Roo is still doing really well, YAY!!!

Just about your leg and groin pain. That is where Matt's pain was located and it caused him to double over at times but also limp. Does this happen to you?

When he was admitted the first time the surgeon said that the reason he did this was that his ileum was so inflamed that it caused inflammation of the overlying muscle that runs through the groin and into the upper thigh. It made sense to me and he also said at the time that he felt there was most likely an abscess under the muscle as well, they just couldn't locate at the time.

Just on a side note Wendy. Matt is the opposite to Roo, Matt presents quite well but his bloods tell a very different story. Just my opinion but while ever your labs look good the docs are all too ready to brush things off. Roo was the opposite, like you Wendy, she had all the visible symptoms but her labs were always normal so they shrugged their shoulders and away we went, till the next time.

Dusty. :hug:
 
I was limping pretty good before I got hospitalized too. That makes a lot of sense with the overlying muscle (my inflammation was in my ileum too). I also had a problem with agonizing pain in the car ride to he hospital. The smallest bump sent pain all through my body form the abscess. I could barely stand up straight.

I've heard others suggest, if you end up in the ER again, tell them your doctors won't take your condition seriously. Or emphasize how far away your next scheduled appointment/scan/lab work is so they know immediaate attention is necessary. Sometimes the docs in the ER are more willing to do tests if they know you won't be checked out anytime soon if they discharge you.
 
Although I havent been limping lately, yes...I have been limping. I think I even mentioned in one of my posts last year that I have been limping. Marisa, I dont have the sensation of being in pain after every bump. I have had difficulty standing up straight at times. Everytime I go to my GP, she checks for a hernia. (last time I saw her was before Hal'loween... I just don't go to her anymore)
I will definitely say something if I ever go back to ER. I have a full-feeling in that region.

So Matt must be glad to be home. I am glad for you that he was diagnosed quickly :) And yes...Charlie is awesome. He is 10 and quite a character :)

W.
 
Only stuff I can find are some folds are normal in certain parts of the bowels but in other areas they aren't normal and where they aren't normal it usually means that there is inflammation present.

My boyfriend mentioned Diverticulitis:
Diverticulitis is swelling (inflammation) of an abnormal pouch (diverticulum) in the intestinal wall. These pouches are usually found in the large intestine (colon). The presence of the pouches themselves is called diverticulosis.

Symptoms

* Abdominal pain, usually in the left lower abdomen but can be anywhere
* Chills
* Fever
* Nausea
* Vomiting
* Weight loss
https://health.google.com/health/ref/Diverticulitis

Pouch, fold, could be the same thing really. Check it out.
 
Hey Wendy,

Have been reading through Matt's discharge papers and he has a Psoas abscess. I have been browsing the web and reading up on it and many of your symptoms may fit the profile but I don't know how long it is possible to have one without it becoming bad enough to require hospitalisation. It can mimic gynaecological pain as well.

When Matt presented his WCC was 33 but he had no fever. The other clue that may help you distinguish is in his case laying on his back with his knee flexed was the most comfortable position.

wouldn't an abcess show up on 2 MRI's ?
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You should find this very interesting Wendy...........

Ultrasonography is diagnostic in only 60% of cases of psoas abscess,[9] compared with 80% to 100% for CT.[10] Sensitivity and specificity of diagnosing psoas abscess is not improved by magnetic resonance imaging (MRI), and with its higher cost and greater patient discomfort, MRI has no role in the diagnosis of psoas abscess.
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Keep us posted and good luck!

Lots of love, :hug:
Dusty
 
I do yoga and find sitting crossed legged uncomfortable on the right side. Also, if you imagine laying on your back with knee bent toward the ceiling and letting the knee fall to the right side ... that is painful. I have to shift my weight to my left leg often when standing. I also have been brought to my knees on occasion because my back spasms (I think). Everything I read on what Matt has, says it is rare complication of Crohn's. It does sound like that is what I have and now I am a little worried that the MRI in the spring is going to be a waste of everyones time (even though I am not cancelling).
My doc initially thought I had arthritis in my hip - then I had x-rays and an ultrasound and a transvaginal ultrasound (I think they were looking at my ovaries or something). It came back neg but during the transvaginal ultrasound the technician said "no wonder you're in so much pain".. when I asked her to explain she said she couldn't. I know I had A LOT of gas and D around that time so maybe thats what she was referring to....who knows... but I certainly worried until the results came back as fine.

Im at a loss.... seriously. maybe I have diverticulitus (on right side only?) I agree, It does sound like I have an abcess and I have thought that ever since I came on here and spoke with Marisa and Cristin.... now Matt's symptoms sound very familiar to me as well.
It has been a week or so since I self-medicated and I can feel the burning sensation return in my pelvic/hip area.
One of these days I will be able to post that I went in to emerg. and they figured it out and things are better. I CAN NOT WAIT to be able to write that e-mail to you guys :D

the "folds" comment has me scratching my head though.... sounds to me like we are supposed to have folds :D

DustyKat - I hope Matt is doing better now that he is home. How is he doing? How did they fix his abcess. What is WCC?? I know nothing when it comes to test results involving numbers...

Thanks Crabby - I have some reading to do. I have an 80 year old friend with diverticulitis and although there are some of the same symptoms it is the left right side that makes me think its Crohns... and b/c the nurse refers to it as crohns and the strictures. I think diverticulitis can develop blockages as well though,,,

I wil be going to the doctor on Friday. :D
 
Hey Wendy, I think WCC refers to white cell count. Elevated wcc means inflammation is present. I think normal range is something like 3.4 to 10. When's the last time you had your blood tested?
 
I think the last time was about 4 months ago. They are also sending me a requisition for blood work. I think they come back normal as I never hear from them. I called once initially and was told in future, they would call if there was an issue.

Wow.. DustyKat... 33????
 
Matt is still doing fine and he is so happy to be home, arrived here late yesterday. School starts back today after the Christmas break and he can't wait to get there!

WCC (White Cell Count) is raised when infection is present, so the test they refer to when the doctor tells someone they are septic. When you do have bloods Wendy ask them to also test for CRP ( C Reactive Protein), this is the best test to show inflammation in CD. As I said before, in Roo's case her blood tests were never an indication as to how ill she was. In Matt's case his bloods seem to tell a different story to the way he presents, he can feel well and look okay but his bloods can be quite off. The docs were quite concerned that he had been left too long before presenting to hospital and I had to really reinforce to them that until that morning he was no different to the day he left hospital two weeks prior. Granted I didn't think things were right in that 2 weeks but they hadn't changed.

Matt had a pigtail drain inserted to drain the abscess. He still has it in place as he has a fistula and the docs really don't think it will close without surgery, so they are talking of operating in about 6-8 weeks. The drain will stay in until then and he will remain on oral antibiotics until his review on the 7th March. I am taking it day by day as I'm not convinced it going to be plain sailing until then, I hope it is but..........(((shrug)))

Dusty. :)
 
PS. Matt described his pain at times as stinging but mostly described it as tightness.

Dusty. :)
 
Dusty - that article is so intriguing! I was trying to find online whether MRI or CT scans are better for picking up abscesses after talking with Wendy. I couldn't find anything specifically about the subject. So, thanks for posting that!

Wendy - What if you mentioned the possibility of getting a CT scan if nothing shows up on the MRI?

I dobn't believe my abscess was classified as a Psoas, but they drained mine in a similar fashion with a JP drain (Jackson-Pratt). It stayed in in the duration of my hospital stay (about 2 weeks) and put me on IV antibiotics. They pulled the drain right before I left the hospital and I continued on oral antibiotics for 2 weeks after being discharged. They will give you a CT scan to see if the abscess pocket has shrunk enough to pull the drain. If not, you are allowed to go home with the drain and they usually make you come in every week to check on the drain until they decide it's ready to come out.

Wendy - I do remember having somewhat of a burning sensation every once in a while. Nothing as bad as the abdominal pain, which I described as an extreme bloated and full feeling as well. I originally went to my gyno and she made me get a transvaginal ultrasound that picked up "free-floating fluid" in my abdomen. They had no explanation for the fluid other than that it was really "weird," and that is why they send me immediately for a CT scan, which found the abscess straight away. Mine was pretty darn big though. If yours is smaller, I could see why the MRI wouldn't pick it up AND if Dusty's article is right and it is unable to be picked up with MRI!

I would definitely push for a CT scan! You've got nothing to lose with getting it done, right? Make sure it's the one with contrast. It makes a clearer picture than if you just went in without contrast.

My WBC was also very high. Before I had the CT scan and ultrasound they thought I might have a liver disease and tested me for all 3 hepatitis strains.

I also slept many nights in the knees up on my back position. ;)
 
Keona said:
I think they come back normal as I never hear from them. I called once initially and was told in future, they would call if there was an issue.
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Wendy, that would piss me off to no end!! I know you don't want to lose your slot with these doctors but couldn't you get the ball rolling with a new GI and keep these yo-yo's in the meantime.
 
Marisa...is there any prep for a CT ? Although my doctor wouldnt take it very well me asking for a CT scan... I am going to walk in this week and ask for one. Again, I am sure there is a long waiting list. Thing is.they ARE finding something on the MRI's but they only do something about it at 6 month intervals.

My pain (it is more uncomfortable) is always there but sometimes my hip will hurt worse if I am on it/walking/standing. If I am laying down on my back I find I cant rest my hand on my belly or have a pillow on my belly as it starts to feel really heavy and creates a lot of pressure. So it has to be clear from my sternum down. Also if I am having a bowel movement, i can definitely feel a lot of pressure in the same pelvic area (where I always feel it). Same when I urinate.. any pushing movement hurts. Oh ya, and when I sneeze, sometimes that can make it feel like a ripping.

Dexty, yes, I am getting so frustrated..which is why sometimes I am almost brought to tears ..out of sheer frustration. And I am a fairly happy go lucky person. I feel really powerless in this situation. I think the answer is having to walk in to ER if my doctor this week tells me to wait longer. The line that pisses me off the most is having someone call you and telling you yep...there is "folds" found in the MRI and it was abnormal...BUT i cant say anything b/c Im not a doctor or clinical nurse. SERIOUSLY?!?!? so then why don't they get the clinical nurse to do the phone call?

The thing that gets me is I am not in extreme pain however I just feel really crappy 24/7 .... im not going out with my friends and I feel tired all the time. Just an unwell feeling. I think that is what hold me from going in to ER. Im not writing in pain... however, it has been going on for a very long time....
:ghug:
 
just curious... on a scale 1-10 (10 being most painful) how would the pain have been rated? I would put mine at a steady 6 ... for the most part (sometimes it is worse) however, the fact that it is constant is what is getting to me. It is more the unwell feeling that comes with it - tiredness, cranky, feverish, sweaty, complete lack of energy...etc.... did I mention I have zero energy??

...and DustyKat.... does school only start now for everyone or is it b/c Matt was/is sick? Thats a long Christmas break if everyone gets that long!

Just checked my mail and received a gynaecologist appointment for 8:45 on february 24th. I guess there isn't as much of a shortage for them as GI docs in Canada... (makes sense considering they only serve half the population). Anyhow... the count down is on.... good news....
 
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Matt's pain was around a 7 and was constant and would also come in waves of higher intensity.

It is summer here so our school year goes from January - December. The Christmas holidays are the long break between the school years but they don't have as long as it appears to me the kids get in the US. Do you get long summer breaks in Canada?

So good to hear that your your gynae appointment isn't too far away, good luck!

Dusty. :hug:
 
In Canada - university - there are 2 terms. September 4th or so - Dec.12th (exam period time up until the 22nd). Approx. 2nd of January until April 9th or so (but then an exam period with no classes...just exam dates).
the summer break goes from about April 9th (2 weeks of exams/possibly none) until September 4th. There are summer classes as well if you choose, which I am sure is an option there as well.
I hope you aren't in the area with all the flooding!

..I am willing to lay money down that I have an abscess at this point...
Im still going on Friday to my GP....
 
Hi, Wendy! Nice to see you, but sorry to hear things aren't going so well. I had an abdominal CT scan and had to drink some barium. Gave me the trots...thought I wouldn't make it through the test but i did. :) They did some IV contrast as well during the test. Iodine, I think. Made me feel all warm. I liked it b/c it was freezing in that room, but I've heard others say that they felt like they peed their pants. I hope you get some answers/meds/something soon!!

May
 
Hi May
Thank-you :D for the information. Did you have to fast before hand? I am asking b/c I am wondering how they do that in hospital. Wonder if they do it without the fasting...
It sounds very similar to what I am use to with MRI's They make you drink a lot of orange flavoured metemucil ..and the longer you take the thicker it gets. They also use IV that makes you feel like you pee yourself. Doesnt sound all that different except the barium. Funny how you liked the contrast. I wasn't especially fond of it - i wasnt warned about the flooding feeling.. OH... and with an MRI they give you a needle in the arm as well (they gave me 2 needles the 2nd time) of Buscopan I think to relax your bowels.
Everyone on here are so helpful... i am very close to convincing myself to go in hospital to get it looked after. I'll keep everyone posted.
Wendy
 
Hey Wendy,

Matt had a couple of CT Scans when he was in hospital and he fasted for about 4 hours. Each time he has had to drink 500 - 600mls of a prep called Gastrogafin (smells like aniseed) commencing an hour before the scan. He also had the IV contrast but the advantage he had in hospital was they always made sure when he was cannulated for his IV fluids and medication they used a cannula that was suitable for the contrasts in X- Ray.

HTH, :)
Dusty
 
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Yeah, depending on what type of CT scan you get some of them involve contrast others don't. My first CT scan I had what Dusty described. I had to drink Gastrograffin (non-barium) that tasted awful. To me it tasted like black licorice or Fruity Pebbles cereal gone wrong, haha. I had hard time getting that stuff down. I had to prep at home and then drink more once I got into the x-ray room. They usually mix it with some kind of flavoring packet. For that one I wasn't allowed to eat anything after midnight and then only water the morning of the scan.

Sometimes they do barium prep, though all of mine used the Gastrograffin contrast. They usually opt for this if you are at risk for some type of blockage. The barium contrast hardens, as you know, so it can be a risk to do. I've only taken the barium contrast once and that was the 2nd time I was hospitalized for a partial obstruction. All my other scans in the hospital I fasted for...but I was also only on clear liquids for most of my time there too.

I'm actually getting a CT scan this Friday and I'm doing all the prep there. I was just told not to eat or drink anything 3 hours prior to my test time and then I'll drink all the contrast an hour before my actual time.

The contrast, if it's the non-barium stuff, acts as a diuretic for several hours afterwards.

I hope you can get your doc to agree to a CT scan! I worry you have an abscess too and yours docs shouldn't wait on that! At the very least, hopefully you can last until you see the gyno and maybe SHE will be smart enough to order one for you.

Oh, and per-diagnosis I probably would have described my pain to be an 8 or 9 with waves of 10. It was pretty awful. The second time (when I had my partial obstruction) it was 10 absolutely. I just remember the first time the pain was so constant that I couldn't even concentrate. It was agonizing. My mother-in-law had bought as this huge flat screen TV for Christmas and I remember my husband picked it up the night before my CT scan (and the day I got admitted to the hospital) and was setting it up and I could have cared less. I barely remember much of that night I was so uncomfortable.
 
Wendy, I'm just curious if you do go to ER and they did spot something, what would happen then. I don't know anything really about the Canadian system but from the wait you all seem to have for everything, it seems even more effed up than ours.
 
Hi Dexky
I'm not sure I understand your question but will try to answer. If I went to ER and they found something such as an abscess I am sure they would keep me until the problem was resolved. If I went and it was not time sensitive so-to-speak, then they would send me home and tell me to follow-up with my doctor/specialist.
When I was working in ER, the problem I saw was that since health care is free here, it seemed like people went there instead of their family care physician. Quite a few cases weren't "emergency" or could have been dealt with outside of the ER room in a walk-in clinic for example. I think the ER is basically a place where they can have quick access to tests where as if you went to a walk-in clinic and suspected something, they would just send you to ER. If you have a broken arm for example, some walk-in's have x-ray machines but will send you to ER anyway to get a cast.

Marisa, That is my dilemma. My pain hovers around a 6 or 7. If it were a 10 I wouldn't hesitate. What bothers me is that it has gone on for so long. My friends aren't calling me anymore to go out b/c they know I wont want to do anything and it is interfering with my day. I have no energy at all and the burning in my hip area is constant.

I had a barium x-ray as a child for an ulcer (6 or so) and I remember drinking the barium and it came back up projectile. haha... wasn't funny as it went all over the technician. I also remember them putting something in it to make it taste better (didn't actually). I think it was the thickness that I didn't like about it. I was asking about the prep b/c if I did go in, I was wondering if they would make me wait around for a few hours drinking barium/fasting, etc...which I have no problem doing, just wondering.
 
ER is where the uninsured go here!! It isn't technically free, but it is illegal for them to turn anyone away who can't pay.

I'm glad you have that option though, don't hesitate to use it Wendy if it gets too much for you.
 
Ah... okay that makes sense...(well, does and doesn't) so then your ER must be full. Do you have a triage system like we do here? (Hopefully!)
Thanks Dex!
W.
 
In our southern border states, yes ER's are always full. In large cities, on the weekends especially, ER's are notoriously busy. I'm sure they all respond more rapidly to trauma.
 
We go to ER also. I just mean the uninsured use ER like a visit to a GP. The problems are obvious!! and huge!!
 
It's not too bad in smaller areas but in the large cities, ER's can be swamped! There are always tales of long waits and forgotten patients.
 
I think that Hamilton's ER's do a good job. I learned quickly it was a business when I did my placements there. It is also a teaching hospital. I am sure Dexky that the nurses/doctors in your hospitals are well trained for trauma/spotting trauma. Line-ups are difficult for most but when in pain it is hard to contain the frustration. I know for myself, when I feel better I am much more objective re: canadian health care. We have good health care here.. :D

I skipped my GP appointment. Found my steroid creme - which works wonders on my hands!! I am also looking in to Omega-3 fatty acids. Anyone care to tell me anything they know about supplements and minerals... I would appreciate it. I find it really difficult to look through the natural stuff and know how much and when, what to take it in conjunction with....
When I was in ER last, they asked me if my doctor had started me on minerals and vitamins. I heard krill oil was really good (Dr. Oz..haha).
 
Hey Wendy,

If you do a search on Supplements or Krill oil and Fish oil you will find quite a few threads.

Roo takes flaxseed oil because she is a vegan and other supplements but I'm not sure what they all are other than the ones she on due to the resection, they are in my sig. I have recently been looking into fish oil and krill oil for Matt. After reading quite a bit Krill oil seemed, to me, to be a superior product so I have purchased some for Matt to take but haven't started yet due to all the recent upheaval. I also plan to commence him on Ferrous Fumarate (because he has terminal involvement) and Calcium with Vit D. That is it thus far!

Dusty. :)
 
Hey Wendy, it can definitely be confusing looking at all the natural supplements on the market. If you checked with 10 naturos, you'd get 10 differing opinions no doubt. Good luck!!
 
I take krill oil for women by Mercola (which I actually just found out Dr. Mercola's office is like RIGHT down the street from where I live), which has primrose oil added to it. It is supposed to help during your menstrual cycle with cramping. I take it every morning and find that my cramps have lessened while taking it. I normally only have to take some Tylenol maybe once, if even that. And, I don't know if it's due to taking krill oil, but I did just have a colonoscopy that had GREAT results. So...who knows. ;) I would definitely try it out. Couldn't hurt, right?
 
Thanks everyone! :D
I bought Jamieson brand cod liver oil capsules and I also bought same brand flax seed oil. Thought I would try something....anything.... once i do more research, I will look more into the better brands, etc. You're right Dexty.... talk about differing opinions....
All I know is I heard Omega 3 fatty acids reduce swelling/inflammation.... so Im on it!!
I also learned that my favourite --- ice --- can actually cause inflammation if left on longer for 15 min. I was leaving it on until it was no longer frozen :D It 'felt' better that way but I suppose it isn't so good.
 
I have a MR enterography of the abdomen I know my GI doesnt want me to have radiation so I am pretty sure this isnt an x-ray.
Anyone know what this is?
 
Magnetic resonance...I have no idea what that actually means but it isn't radiation.
 
it is different than the last one. Last time(s) I had MRI's. this one is an MRE (of the abdomen)
No eating or drinking for 4 hours before arrival.
in hospital for approx. 3 hours.

I will be so very happy if I didn't have to drink anything :D
When I googled it, stuff about Crohn's disease came up.

I am changing my diet and adding supplements.

Anyone have any ideas???????????
 
Yeah, I just had a CT enterography and it's specific to diagnosing problems in the small intestine.

You will most likely have to drink a barium solution. If it is similar to mine (with the exception of using an MRI rather than a CT), then they give you the watered down barium contrast to drink (not the full thick white stuff). I had 3 450 ml bottles I had to drink. One every 20 minutes. And then the last 1/3 of the last bottle right before they sent me through the machine. They also hooked an IV up and gave me IV contrast on top of it.

I didn't have to do any prep before arriving there. I just wasn't allowed to eat or drink 3 hours prior to my exam and then I did all the drinking of the prep there in a waiting room.

I did some Googling of MR Enterography and it sounds nd the procedure sounds identical to what I just went through.
 
thanks again you guys. Hearing all these medical terms (when it is directed towards me) is sort of scary. They have sharp things and weird tests.... helps to know there are others who have been through it. So... although I have not received anything in writing yet - I am still getting a loud message that it is Crohn's.
I received the brochure type thing in the mail today - looks.. and is exactly what they sent the other times...it says MRI but the letter says MRE. Anyway... the worst part for me is drinking the stuff - I don't think people are even made to consume that much liquid at one time let alone what they put in it (thick creme of wheat stuff that gets thicker the longer you leave it).

I dont know... hmmm...maybe it is what I have had the other times but now they are just getting more specific and calling it MRE. Different types of MRI's....

If I have already done it - that would be a plus because then I know what I am in for.

Thanks everyone... I go on March 23rd .. not as long of a wait as the other times...
 
Agreed with Rebecca. I had to go look up CT w/ enterography before my scan because I had never had it referred to with enterography before. But, it was the exact same thing I had had done before.

I find holding my breath while gulping the liquid helps and then expelling the air out (while still not breathing through my nose) to let the flavor out helps with the gag reflex. I didn't have any problem doing this. Also, if it is like my CT, they let you use the bathroom if you need to while you are drinking all the prep.
 
yes - I did get to use the washroom as well - so it could be a little more difficult.... my friend who went with me made sure I didn't take my BigGulp of whatever it was with me... :D I think it is orange metamucil but LARGE quantities....
They also put an IV in the back of my hand for contrast but they poked me in my upper arm.. I think that was buscopan. The first MRI they gave it to me once the second they gave it to me twice. What I am also wondering is: if they could give it to me via the IV the 2nd time.... why didnt they do that the 2nd? The second time the IV was in but they still poked my upper arm... its not really that big of a deal - just wondering....

thats not very clear. I had the first shot in the upper arm of buscopan
the second shot (the same MRI) they put it thru the IV....

Thanks Rebecca... that makes sense
 
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yep - right in the upper arm where you get vaccinated. I couldnt understand why they were doing that when I had an IV. Then the second time - the first shot was in the upper arm and then gave me another through IV.
The doctor giving it to me warned me that it would feel like he gave me a whollop in the arm... and it did...

It is all making sense to me now why I never get colds and flu's..... I thought it was because I use to run a lot and it gave me a good immune.
 
just returned from ER where they helped squatt.
I have a fever of 99.0
they did blood work - fine
chest x-rays... why??? not a clue... but clear (could have told them that as I had them done a few months ago.
abdominal x-rays... clear
urine sample - fine....
a little dehydrated but nothing out of the ordinary.

...im about ready to go postal.

Dr. told me to follow up with my family doctor (whom I cnt get in to see until March 4th) but have an appointment on tues with an intern. (so much for being told to stay with the "team" b/c they have my history)
they said they couldn't give me anything for pain because NSAIDS are bad and narcotics will slow my bowels down and if I have an obstruction that wouldn't be good. They told me to use ice (which I walked in with and to take tylenol every 4 hours... which I have been doing.)

NOW WHAT DO I DO??? IM NOT GETTING ANY HELP over here!!! ...and people wonder why I hesitate going to ER.
 
no more mention but the doctor did come back and tell me that it was safe to say that I had Crohn's (I told her I wasn't officially diagnosed via writing - only a phone call diagnosis by a nurse)
They told me to follow up with my family doctor - get her to do an ultrasound. When I asked well cant they do one there...they said no, not on a Saturday night. The did a roll up bedside ultrasound.
ya, I am in constant pain.
I had to give my dog to a friend because I cant walk her anymore
 
Wendy - I am so sad for you. The doggie comment at the end totally got me. :( When do you see your women's doctor again?

Your ER totally blows. I really wish they could have been more helpful.
 
I didn't give her up for good. My friend took her until I feel better. Feels weird without her here :(

I have a doctors appointment on tuesday - it is with an intern.
the 24th I have the gynaecologist appointment..
March 23rd is the MRI/E
March 25th is my GI appointment.

I called the on-call doc and instead I got an intern who gathered information and then called me back to tell me to take gravol, emugel and something prescribed but it wasn't for pain....(I don't know what it was). She told me not to take advil because I have gastritis.... no mention of not taking it b/c of crohns. While I was on the phone I googled emugel and saw it was a topical NSAID...so I basically gave up and said I was going to ER.
They told me I have Crohn's - and what I was having was a flare... no?....really??
...did the tests and told me to see my GP.
nothing for pain b/c of the gastritis and any pain killers will slow down my bowels - they told me to take tylenol...which i have been
 
Wendy, can you phone your GI and ask about meds? I know you don't want to be on them but things sound like they are getting out of hand. With you, everything is about that dog so I know things are getting out of hand!! Get help girl!!
 
My GI wont give me meds. They keep telling me to call my GP for pain control. That is the frustrating part... I call my GP they tell me to call the on-call doc, the on-call doc tells me to go to ER, the ER tells me to call my GP, my GP tells me to call my GI and my GI tells me to call my GP. I think I am going to have to find my own pain management until the appointments. My friend has already offered me T3's but I agree, if I do have an obstruction, it will make my bowels worse so I am afraid to take them. I have had them before and it did constipate me. I read the forum looking for something and someone mentioned the horse anti-inflammatory (topical) The DMSO. I am going to try that first before I try any oral medication. I am also thinking about marijuana. When I tried that before it worked and the best part was it gave me an appetite. Im hesitant though because if they find it in my urine or blood they may start treating me different. I don't think they can just randomly test your urine/blood for drugs though w/o consent.
The organization I am connected to (Good Shepherd) are taking me to all my appointments so they can advocate on my behalf. I don't have the energy to be assertive anymore and also when I try to be, I just want to start crying. For example, when they told me to get in contact with my GP to get her to order an ultrasound (they said there was a larger, more nuanced one) I told her that I have tried and how my friends don't call me anymore to do things b/c they know I will just say no.... I got all choked up. I think someones long-term health needs to be considered. Just b/c my pain wasn't a 10.... they need to consider it has been at a 6-8 for a long time now...they're not looking at the overall picture. They keep saying you can call the on-call doctor after 5 and on week-ends...but what about the pain NOW?
I dont get it...
my hands have broken out into blisters as well and then the skin tears off - painful. Funny how they are quick to prescribe something for that "Ohhh, that looks painful"...and then they give me steroids. Isnt that similar to what is happening on my insides?? I am going to stop using the creme so they can see my hands (all of them.. GP, ER, GI) at their worst.. then maybe they will believe me... or connect the outside to the inside.
My friend is going to go find me some DMSO.
Thank-you for listening everyone. I say it every time.. I don't know what I would do without this forum. I am also going to contact someone from the Canadian Crohns foundation and see if they can connect me with someone here in Hamilton.. maybe they have some ideas.
My overall thought is they really don't know much about Crohn's Disease do they.....

oh...one more observation. Interesting how it is not okay to go into ER and ask that they do a CT scan but according to ER it is okay to go into my GP's and ask for an ultrasound.
 
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Wendy, I remember Dan Bergy talking about DMSO some time back so I looked for it. Here is a link he posted to an article about it...

http://www.dmso.org/articles/information/muir.htm

I don't know anything about it but my vet wife says that many people use it for arthritis but she's never heard of anyone using it for any thing else. If you do try it, make sure you know what you are doing. Apparently it will carry whatever else it comes in contact with into your bloodstream!!!
 
ya, thanks Mark and Rebecca. Since my friend didn't find it (snow storm started today) I think I should probably wait and see what the doctors say. I only have to wait until Tues.

"As DMSO is such a strong solvent, it will dissolve nitrile gloves, so rubber gloves should be used."

Ummmmm...yep....thanks Rebecca...think I will wait!
 
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just an update:
was getting ready for my doctors appointment this morning and they called and cancelled. Someone was taking me and they belong to an agency so it made things difficult. I managed to make a same-time appointment with a different intern after I mentioned the ER told me to...and when I mentioned Crohn's.
Anyhow, she was really nice and gave me a low dose script of dilaudid. I have to keep a pain diary and also was suggested to take gravol and senekot. I have taken two so far (dilaudid). The first one worked - knocked me out since I didnt sleep much the past while. The second one didnt last long but I am very hopeful now. I have a follow-up on the 28th to see if it is working and she said I can call her anytime during business hours.
She also made another referral to a different GI doctor. Basically, the first one who has an appointment available will be my GI. If I cant get in for awhile, (she put a rush on it) then I continue with the one I already have. If the new one comes through first - then go there.

SOOO...things are seeming a bit better... I still have the full feeling and pressure on the right side which is not going with pain meds but it takes the edge off a bit.
Thanks for listening and the guidance/encouragement :))
 
Yay, Wendy! Things DO happen for a reason! So glad your replacement intern seems to be doing some good things for you.

I'm praying you get a GI appointment soon and that it's a good one! Thank goodness for pain meds! ;)

They hgave me dilaudid when I was in the hospital. I was knocked out the first time tey gave it to me then, like you said, it didn't seem to last long after that. But, thankfully they had me on antibiotics, so I didn't have to stay on it long. No operating heavy machinery! ;)
 
Ya, I was so grateful I just wanted to hug everyone.
I am on pretty well the lowest dose so I will try to make it until Monday. The pressure and fullness is still there but the pain intensity has decreased slightly.
Im still grateful...any reprieve is welcome.
Thanks Marisa :)
 
Good luck Wendy!! I hope it works out that you get a great GI!! You've been flying solo long enough!!
 
Thanks Mark! I think (although cant be sure) I only got the help today because I had someone with me. I definitely felt heard today.
 
another update.
Saw the gynae and I have surgery on April 5th - she thinks I have endometriosis (she cant comment about Crohn's..thats not her speciality). It is exploratory surgery and if they find anything, she will clean it out. She mentioned a drug (monthly injections) called Luvoc (I think) so I wont be able to have children. I will also need hormone replacement. She said the side effects are not pleasant. I said... neither is the way I am now. So, I am positive... I feel answers are just around the corner.
I have a doctors appointment on Monday to talk about if the dilaudid needs to be upped...wow..I have doctors appointments everywhere.. cant keep them straight anymore. I feel good though... (mentally) that things are going to finally start rolling.
 
I'm glad you're finally getting help Wendy!! It's been a long, painful journey for you!! Good luck with all those "ologists":)!!
 
LOL... "ologists" !! :D no kidding, eh?...
I didn't think I would ever get help...
It was funny b/c my appointment yesterday was cancelled (and made another with the intern)
and then today, I arrived and the nurse told me the doctor was called away to deliver a baby so I needed to reschedule. I told her I would wait if that was okay..
so..I did... for several hours :D almost like a sit-in... haha (just kidding).

the doctor was wonderful. One of the nicer ones... just wanted to mention not to believe the comments on "rate your doctor.com" it is very subjective.
 
I "ran" over here as soon as I read your Facebook post, Wendy!

So glad the ball is finally rolling on something! You deserve to get your health back. You've had so many uncertainties. Promise you'll stay in touch, even if you don't end up being a Crohnie. ;)

:::HUGS:::
 
Hi marisa
They "doctors" think I have both endometriosis and Crohns...but should find out in about 2 months or so... I will keep in touch either way.
I saw my GP today and she has been trying to call my GI and he hasn't called her back either - there is a formal way to get me in to see him... so they are going to do that (A form to make sure I get an office visit) They have also made a referral to another GI doc. My GP understands my frustration now.
 
Thanks May. I am hopeful too. Although the gynae cant tell me if I have Crohn's, I feel like I would be almost there to getting those answers... the doctors are now getting angry that the GI isnt communicating with anyone (it may be just reception but they said the formal letter will get past the reception and to the GI. Legally, he has to respond at this point.)
I am hopeful :D
 
Hiya Wendy

I am so glad that something is going to be done at last.
As you may or may not know, I suffered with endos for years, I was in terrible pain, especially during menses. Ten years ago I had a hysterectomy, got everything removed. The gynae said the endos were everywhere, like barnacles on the bottom of a boat! They were stuck to my bowels, bladder and spine. No wonder I was crying every day with pain! He did a clean sweep! Five years later they found the Crohn's.
There is a corellation with Crohn's, Look up my article on the ForumWiki and my personal experience. This is why I think it's important for Crohnie women to tell gynae about Crohn's and to tell gastros about their monthlies.
I've been on HRT for 10 years, I have no side effects at all, in fact, I feel better than I've ever felt in years since I 'got rid'. Absolutely no regrets, ever!
I really empathise, if it's endometriosis, the pain is murder, it's debilitating and it's Hell!
It's possible that they could 'clean' you up without touching your girly bits, I elected to have mine removed, I'd had enough of them! I had my 2 kids, and didn't want anymore.
I wish you all the luck in the world, you need a break, you need answers, you need your life back. Hopefully an op will give you all these!
lotsa luv
Joan xxxx
 
Thanks Joan

Yes, she did tell me that she thought there was something wrong with my ovary (right side) but when they did an ultrasound, there was nothing and nothing showed on the MRI's either. She wanted to put me on something called Luvron (I think) it is a monthly injection that stops menses and I would also need an add on...which is basically vitamins and calcium. She told me that I would not be able to have children once I start so I needed to think about it. Although it is not a contraceptive, it is not safe to be taking if pregnant or if I am thinking about being pregnant. Then she wanted to do the scope first as the injections and side-effects are not very pleasant.

Everyone seems to think that I have both. I on the other hand dont know anymore... and I think they ought to hurry up with their imaging and scopes and medications... lol.... I am relieved that they are doing pain management though and a referral to another GI has been made. As long as thy are helping with pain, I am a little more patient ... I think I have been overly patient this entire time...
I hope I can keep my bits - I hear the recovery is brutal!
 
when I saw the intern, she sent a referral to both; my GI doc to get an appointment (he is obligated to comply) and to a new GI since the one I already have doesnt communicate with anyone.
I received a call today saying they received the referral for an appointment and they want to make it for the 23rd (same day as my MRI for the GI - so cant make the appointment) but she also said that my doc looked over my records and have several suggestions... but I need to go in to hear them. My appointment from a year ago is on the 30th ...so I may have to end up waiting anyhow.
I have several new symptoms and the most concerning is the pain from the right side is moving to the same spot on the left side... only not to the same extent and not all the time... very crampy that comes and goes with no way to know why.

Anyhow - just updating to let everyone know that I am close to figuring out what the "abnormal folds" mean... my family doc never got the report about it so she assumed it was normal....
on the phone if you recall, they said it was abnormal and couldnt tell me b/c she wasnt a doctor or clinical nurse.

I am getting hopeful...
 
Hi Wendy,
I was just reading through all these posts and wow, you are having a rough road..I am sorry to hear that for you!
Hopefully you will get some much needed answers soon.

there is one post from a while back that happened to catch my eye..

"the chest pains are concerning. Sometimes it is a tightness and sometimes it is going really very fast even when I am laying down. Other times it is beating normal and then if feels like my heart beats longer than it should then goes back to normal. I wouldn't say its painful but it is a little uncomfortable."

my daughter was complaining of these symptoms for a bit so we asked her GI about it..obviously it is concerning for anyone when they are having chest pains and rapid heart. He checked her pulse and BP and said that she was quite dehydrated and that this will cause those symptoms. He told her that she had to make sure to keep drinking fluids, and to eat when possible (easier said than done..). Well, he was correct. We loaded her up with Gatorade and sprite and water..whatever she would tolerate...and the racing heart stopped :) Just a little food for thought for you. I noticed a little later in your posts that the ER said you were a "bit" dehydrated when you saw them.

Feel free to tell me to shove off LOL...

Seriously though..I wish you health and hopefully you receive your answers soon!
Your MRE is on the same day as my girls surgery. And also, btw, that (MRE) is the test that finally gave us some answers on how extensive her disease was. You should ask to see the results on screen afterwards...it's pretty neat to look at !
 
Hi Crohns mom
Thanks for your response :D

Yes, it has taken a long time to get some answers and hopefully I will know soon what is going on.
You may be right about the dehydration thing as I have been have a lot of Diarrhoea (when its not that it is constipation!!) That being said - it makes sense...but Im not really sure how to keep all the liquids in. Food is not sitting right with me (hurts after I eat) so I haven't been eating much either. I started to have chest pains again tonight after they went away for awhile. Funny how you mentioned it. I was concerned enough to get a sharpie marker out to make a mark as I have a feeling they will ask where it hurts. That way, if the pain goes - I can still show them!! :D

What is Gab having done? She is the one who got the scholarship right?? Very impressive :D
I will be thinking about your daughter on the 23rd I also wish her heath and happiness :)
I had no idea I could ask to see the tests. they are so busy so I just figured they would say no but it wouldn't hurt to ask!! All I know is that my GI does not want me to have anymore x-rays or CT scans (ct has more radiation that a reg. cat scan I just learned)

Anyhow - thanks for your reply - I am getting up to get something to drink right now :)
 
I am getting a little tired of this disease running my life.
I have had to reschedule a non-violent crisis intervention training twice now... and it is being offered to me for free. This may be my last chance for a free training. I got a call from my GI saying they want me to go in at 8:30 Monday a.m. My NVCI training starts at 9:00. I of course had to take the doctors appointment as they are hard to come by even though I told them I have an appointment scheduled a year ago for the 30th.

I dont do anything and then when I do plan something, it seems to get railroaded by doctors appointments.
Okay..I am done complaining now...
 
Aww...sorry to hear you had to reschedule again. I guess it's beyyer to have the problem of too many doctors wanting to see you than no one wanting to see you, right? ;)

Your last comment reminded me of something that used to happen back when I had friends that lived in the same town as me. I'd be so bored wanting to hang out with people, but no one was available. And then once I finally found something to do, everyone else always called asking me if I wanted to do something else cooler. Haha.
 
haha..it has gone from one extreme to another Marisa!! I have 2 appointments with my GI within 10 days and a MRI in between... yet I had to wait a year... bizarre.
If anyone experiences the problem of not being able to get an appointment...try getting the GP to write a referral to your GI. They are obligated to comply and it actually worked!!! They are now listening.

I went to a meeting tonight and if it wasnt one end - it was the other... I am now experiencing sulpher burps - which can be worse than farting. Especially since they have a rotten egg taste. I get this from time-to-time.... and have been checked for gardida and H. polori... both neg. and it was through biopsy so accurate as its going to get. Have no idea what causes it - but my stomach sure does feel toxic...

babbling again...

Im at the point that I have to laugh at everything because if I dont I am going to start crying.
Friends are taking me to a sugarbush tomorrow ... I am not feeling so great but they were mighty convincing I decided to go (besides... I crave sugar ALL THE TIME)...
wish I could share Canadian maple syrup with everyone....
 
folds

i dont know about the folds but i can tell you to make sure the surgon does not stitch/stapple you up wrong. they did me and now plastic surgery, be carefull...
 
Well, off to my pre-op appointment today. I guess I will find out what exactly they will do to me. I am having a laparoscopy to look for and remove endometriosis...also an autoimmune disease. I will need two weeks to recover and then they will do the CT scan with the NG tube in place (forget the name).

I have done a lot of reading about endometriosis and it can mimic Crohns so I am hoping I dont even have Crohns.. my GI thinks I do though and my OBGYN thinks it is only endo. Apparently, the OBGYN can do a bowel resection if the endo has damaged my bowel. My GI asked what I thought after everything I have read.. and I think I have both.

I just want answers...
 
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Good luck with the pre op work up!

I noticed the date in your signature and was wondering exactly what you were having done. What do you think about about the OBGYN doing a bowel resection?

Thinking of you mate, :hug:
Dusty
 

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