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04-19-2010, 08:28 AM   #1
Minxy
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Hi everyone, I'm new here

Hi everyone, I'm new Diagnosed with mild Crohn's in the small bowel (no colon involvement) over 30 yrs ago. I was prescribed Prednisolone, which I could not tolerate, so it was discontinued after a few weeks, and the GI doctor recommended I learn how to manage the CD through diet alone.

I went through the "Elimination & Challenge" diet, learnt my triggers and for the next 25 yrs on a strict diet managed the disease quite well, though I had acute flares every few months where I would get inflammation, partial obstruction in the small bowel, fever and infection.

Fast forward to 5 yrs ago, after a particularly bad flare following the death of my father, the pattern of the disease changed. I developed postprandial pain no matter what I ate. It caused a very intense feeling of pulling and pressure in the upper jejunem area, as though food was getting stuck. In turn the pressure caused my diaphragm to be rigid, and this adversely affected the use of my
secondary muscles of respiration, so I became breathless on the least exertion, and even breathless after a meal.

I also had an enterocutaneous fistula in the upper left part of the abdomen.

My GI doctor considered it likely I had a stricture in the upper jejunem, but when a CT scan of the small bowel failed to find it, he changed his mind and insisted
it was something new e.g. gallstones. So over the following few yrs I had all kinds of invasive investigations. A few things were found, including mild diverticulosis in the sigmoid colon, but nothing to account for the upper abdominal pain.

I discovered after reading up on Crohn's and strictures that I might be better on a low fibre diet, and so it turned out to be. But even on the low fibre I still find I have to eat small meals, or the painful postprandial pressure is as bad as before.
So I am often hungry!

After several yrs, with my symptoms getting worse the doctor agreed I should have an MRI scan of the small bowel, with contrast. This was done recently
(2010) but failed to find evidence of stricture or bowel wall thickening, and apparently peristalsis was normal. The doctor now says my symptoms are not due to a stricture, nor can he suggest what else they are due to . I find this mystifying, as I cannot think what else other than a stricture could cause such specific symptoms, especially when all other possibilities have been ruled out. I have read that strictures can be very difficult to find with scans and that a better diagnostic tool is the wireless capsule small bowel endoscopy.

I would be very interested to hear from anyone who has CD in the small bowel, especially if they have had a stricture in the upper jejunem area, and it has caused pressure in the diaphragm and interfered with their breathing. Also, has anyone had a wireless capsule endoscopy which diagnosed a bowel condition that had not been visible on a CT or MRI scan ?

Many thanks for reading
04-19-2010, 08:58 AM   #2
Hedgehog
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Hi Minx,
I was diagnosed with small bowel Crohn's a month ago after a period of three years with symptoms. I had all sorts of tests which came back normal - colonsocoy, gastroscopy, biopsies of duodenum/colon, bloods, transit study, CT scans, and pancreas function test. I had pain like you describe in my upper abdomen near the diaphram (more on the left than the right) and it was made worse by wine, coffee and any sort of fibre, even soluble stuff. I also lost two stone in weight...went down to 7 stone. My diarrhoea was never watery or bloody but I had mushy yellow stool with undigested food in it. One of the gastro team had the sense eventually to send me for a pill cam endoscopy which showed ulceration, scarring and inflammation in the small bowel. So it seems that the other tests weren't able to pick it up.
I do get a pushing feeling sometimes under my diaphtram but it is mild and I don't get breathless with it. And I did have a feeling of something being stuck when I swallowed but it went away after a couple of months.
Sorry you're not getting far with finding out what this is. I hope this helps. There are lots of wonderful folk on here who can advise you too,
Gail
x
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04-19-2010, 09:01 AM   #3
merrywidow
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welcome aboard the good ship cf
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crohns diagonsed dec 12th 1997

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04-19-2010, 11:08 AM   #4
Astra
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Hi Minx
and welcome

Sorry can't help you with this one, I only had a scope which found Crohns in small intestine.
Lots of people on here that will advise you, we're here for support too.
good luck
Joan xxx
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04-19-2010, 11:41 AM   #5
Minxy
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Hi Hedgehog, Astra & Merry Widow,

Thank you so much for your welcome.

@ Astra - it is good you managed to get a diagnosis with a scope.

@ Hedgehog - thank you for telling me about your experience. I am glad for you the doctors found what was wrong after 3 yrs of tests. It can be so mind blowingly frustrating I have found, having test after test and no evidence being found, in spite of a multitude of clinical symptoms being present all the time. Actually you got me thinking when you said you could not (can not?) tolerate fiber -- and I am wondering whether it is possible that increased inflammation and swelling in my small bowel is causing the narrowing (i.e. inflammatory stenosis), and blockages rather than actual organic change like a stricture. The only argument against this is that I have had the problem constantly for 5 years, even if I am on a liquid diet. Plus, the pain is also triggered by lifting, bending, or using my arms for any repetitive task such as household chores, or even washing my hair. Which suggests permanent change in the gut to me.........

Thanks again.
04-19-2010, 03:46 PM   #6
Hedgehog
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Yeah the fibre thing was really weird because I have eaten a high fibre diet for years as I love veggies and would sometimes get constipated if I didn't. Then when the Crohn's started I couldn't tolerate one tiny piece of carrot. Even when I had a remission, I found I couldn't even tolerate Fybogel which is a soluble fibre and meant to be ok for Crohnies.
But it's strange you have pain on movement...makes you wonder if it's muscular. You get so many strange pains with Crohn's though and it's so frustrating not being able to get to the bottom of it.
04-19-2010, 07:07 PM   #7
Minxy
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Yes, interesting about fibre, because like you, I used to eat a high fibre diet for years -- lots of veggies, lots of fruit including prunes (which I love ), & also I was a vegetarian for 20 years so used to eat lots of lentils, chickpeas, brown rice etc. My BMs were always normal and regular unless I was having a Crohn's flare, in which case I would get diarrhoea until the flare was over.

When I decided last year to cut out fibre to see if it helped, I initially cut out all veggie fibre and most fruit fibre, but to my dismay I got constipated, so I had to go back on the fruit fibre to get things working.. If you are on very little fibre, neither soluble or insoluble, I am wondering how you go about keeping regular ?

I did try Fybogel, but it gives me more problems than eating fruit, and I much prefer to have the fruit!

A few yrs ago when the muscle pain in my diaphragm area started, my GP
thought I might have Myasthena Gravis (MG) an autoimmine disease which attacks the muscles, but all the tests were negative. And MG is apparently never triggered by eating a meal, only by movement. Whereas mine is definitely triggered by eating as well as by certain movements. It is mystifying..... as you say Crohn's causes some strange symptoms
04-21-2010, 05:27 PM   #8
Hedgehog
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I'm still working out how to keep some fibre in my diet because like you, I'm getting constipated.....grrrrr. I'm eating my veggies still but I'm cooking them till they're really soft and not having loads of them like I used to. It seems like my problem is that I have Crohn's in the small bowel but have a sluggish colon and if I eat fibre my small bowel plays up but if I eat little fibre my colon plays up - I can't win!
But I can't tolerate any bran, wholemeal bread or beans now at all. I used to be vegetarian too but during a flare I can't eat any veg at all. I hope I can eat the well-cooked veg once I get off the Pred though or I'll just get backed up.....
I wonder if your diaphragm pain is referred pain? That's part of the difficulty isn't it? You must be really fed up. I know when I'm in pain I just want to reach inside and get rid of the offending organ LOL! If only it was so simple...
Hope you get some answers soon.
By the way, what sort of diet have you followed all these years? I was hoping to ask my gastro about controlling my Crohn's through diet before I go try Azathiaprine. Did you just do an exclusion diet to see what you needed to avoid?
04-22-2010, 08:53 AM   #9
Minxy
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You know I am exactly the same! I have a over sensitive overactive small bowel and a rather sluggish colon. I have never met anyone before with this same problem

What do you suppose is the fault in the mechanism of the gut that causes this?
If it was something to do with foods being not as fully digested in the small bowel as they should be, why would this cause sluggishness in the colon ? I would expect the opposite to happen, i.e. diarrhoea. It is mystfying....

What I have found from trial & error is there are certain vegetables I can eat now, all of them low residue. They are : courgettes (zucchini), aubergines, asparagus, mushrooms, bamboo shoots, plantains (yummy!) and avocadoes.
Everything else causes problems, either because they contain too much fibre, or because they create trapped intestinal gas which takes days to shift and and causes agonising pain! Potatoes are one of the very worst for this I find.

I have tried cooking other veggies for ages, but to be frank I don't really like the taste and texture of veggies cooked half to death and would rather manage by rotating the few I can eat safely.

My main source of fibre comes from prunes. I soak them in hot water and the skin comes off that way. I eat about 8 a day. I alternate them with fresh or dried figs. I can also eat mangoes, papaya, and pears without their skins. But not any of the berries or grapes, sadly.

What I have found makes a big difference to my colon since I went on the low residue diet is drinking lots of water every day. About 1.5 to 2 litres a day, which is more than I used to drink. This seems to ease things up nicely! Though I think I still need the prunes too !

Re: diet......yes, I went on an exclusion diet when I was first diagnosed and identified a number of foods & drinks which I then eliminated from my diet.
I also discovered I felt much better on a low fat diet too. So I combined those 2 diets with a vegetarian diet and managed quite well for 25 yrs really. Though still had flares which did not seem to be diet related, but were possibly stress related..

Then 3 yrs ago I read about the Specific Carb Diet, and went on to that, and I found it a big help giving up grains. And finally added in the Low Residue Diet. I am no longer a vegetarian, but otherwise I am still following the other diets. I suppose it must sound very complicated, but I am used to it, and having introduced them all at different times over the years it has not been too difficult to keep to them. The only thing I would say that sometimes I get phases where I become obsessed with the desire to eat something forbidden like chocolate and
if I can't suppress the obsession after several days then I give in and eat a piece of chocolate, knowing there will be a price to pay the next day Mad or what

I think you are right - the diaphragm pain could be referred pain, but I am sure it is coming from the upper part of the jejunem, which does show as abnormal on all my scans. All other organs show as normal. Only other thing I had in the past was gastritis (dx by gastroscopy) but I am sure this was an 'overspill' of the Crohn's which was v. bad indeed at the time.
04-22-2010, 03:16 PM   #10
Hedgehog
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Blimey, we are very similar aren't we?!! Like you I'm mystified as to why my colon backs up. I sometimes wonder if its a motilty disorder that's separate to the Crohn's resulting in a lazy but sensitive bowel. It's driving me nuts at the moment. I'm going to the loo only once every four days despite eating mushy veg. And like you, I get trapped gas from all the veg. Thanks loads for your info about diet. I might the veg you've had success with as I really can't stand all the gas yet if I don't eat some fibre, I'll not go at all.

I've also had a lot of strange upper abdominal pain like you. It feels like gastritis to me when I get it but I had a gastroscopy when the pain was at its height and the stomach was normal. Like you, I thought that it must be the jejunum. When I had it a few months back it felt like a diffuse intense ache that went from the front to the back. Mine doesn't get worse with movement except that it can be brought on by sitting hunched over or especially if there's pressure from a waistband pressing on it.

I'm so fed up at the moment that I feel like asking to be put on elemental and not eating any food at all!!! I want to get off the steroids too. They've got rid of my small bowel ache but not dealt with the constipation.....See what my gastro says when I next see him.....

Keep me posted on your progress - it's good to have someone who has similar issues and I'm interested to know what they suggest your pain might be - maybe we can get some answers to help both of us!

Gail
xx
04-22-2010, 03:25 PM   #11
Hedgehog
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I meant to add that I'm going to come off the amitryptyline to see if that's making the constipation worse. The doc prescribed it to help me sleep when I was really ill with a flare and now I can't sleep without it....
Ho hum...sleepless nights AND constipation....fab!
04-22-2010, 04:34 PM   #12
Jerman
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Hi Minx, welcome to the forum and best of luck for a quick end to your discomfort. I did happen to have the pill endoscopy, and hear it is a great diagnostic tool for many. You need to plan to be near the hosp for the day and wear what I would imagine a kevlar vest would feel like. It is kindy bulky so plane on wearing something loose cause it would tend to make you stand out in a crowd a bit.

I went into a starbucks as well as to see a movie and a few people looked at me like a was a terrorist.

Good luck with your test, let us know how you do.
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04-23-2010, 09:56 AM   #13
Minxy
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Hi Jerman Many thanks for your kind welcome.

I was very interested in what you said about the Pillcam, and the likeness to a Kevlar vest. I liked your comment about it rather making you stand out in a crowd ! I can see it might !

I must say I had not really thought what would be involved with a Pillcam, and I am surprised that I would have to wear the contraption all day. I would have imagined the Pillcam would pass through the small bowel within say 4 hours at the most? Perhaps it varies from person to person.

Also, may I ask you if you found the Pillcam easy to swallow? I have heard some people find it very diificult. Are you allowed to take plenty of water to help you swallow it? Is it larger than a large multivit pill? Did they give you the dummy pill first to make sure it didn't get stuck due to stricture(s) ?

And there is the delicate issue of retrieving the Pillcam 'later on'. Not too bad if you find it on your first attempt, but imagine if you had to search for it for a week after swallowing it!

best wishes,
p.s. Liking your signature - I am a fan of Khalil Gibran too.
04-23-2010, 10:02 AM   #14
Minxy
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Hedgehog ~ on the subject of diets, I forgot to add that I also avoid eating high histamine foods as well. I find this makes quite a difference to me, particularly during a flare when mast cells in the gut are very active and creating a lot of histamine.

The histamine makes the blood vessels dilate and therefore lowers the BP.
I already have low BP anyway, so the histamine makes it fall even lower and then I get very dizzy and faint, not pleasant at all.
04-23-2010, 05:38 PM   #15
Hedgehog
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Yikes - I have low BP too.....always had it and get dizzy when I stand quickly. Hadn't thought about the histamine thing though so thanks.

I had the pill cam too, I found it easy to swallow. It looked quite big at first but it didn't touch the sides! Mine bounced around in my stomach for a good two hours though and they had to give me an injection to get my stomach to empty so it could go on its merry way through the intestine. It was fascinating looking at the inside of your bowel in real time on the screen!

I found the contraption you have a wear a bit cumbersome but you can leave the hospital and go off for a few hours. I went back to the hospital about 6pm and they plugged me in to see if the pill was in the colon which it was. So they could take the equipment off and let me go. It took 5 more days before I passed the pill in the loo. I'd been looking for it and luckily I spotted it without having to ....er...forage...

I chose not to have the dummy pill because I didn't think I had Crohn's (wishful thinking!) so I reckoned I was low risk for it getting stuck. The doc also said that if it did get stuck then it meant that there was a stricture than needed attention anyway. And she said that one lady had one get stuck but it just bobbed around inside her for four yeras with no problems.....

Gail
x
04-24-2010, 01:33 PM   #16
Minxy
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Hedgehog ~ thanks for all the info about the Pillcam. Wow - it took 5 days to pass!! Wonder where was it hiding all that time! I am glad you have made me aware there might be such a long delay, as I would have expected to pass it in
24 hours once it was in the colon. V. good job you did not have to go......"foraging" for it (very apt word!)

I agree it would be fascinating to see the inside of my small bowel on camera.
I am quite nervous about the Pillcam getting stuck though, as am still not convinced there is no stricture in my jejunem. If it were to get stuck at a stricture I am thinking it could cause a complete obstruction....... and need removing immediately.

How can a person walk round with one inside for 4 yrs! -- presumably it was in her colon by then, not her small bowel...even so you would think it might cause an irritation.
04-24-2010, 01:51 PM   #17
Jerman
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Minx said:
Hi Jerman Many thanks for your kind welcome.

I was very interested in what you said about the Pillcam, and the likeness to a Kevlar vest. I liked your comment about it rather making you stand out in a crowd ! I can see it might !

I must say I had not really thought what would be involved with a Pillcam, and I am surprised that I would have to wear the contraption all day. I would have imagined the Pillcam would pass through the small bowel within say 4 hours at the most? Perhaps it varies from person to person.

Also, may I ask you if you found the Pillcam easy to swallow? I have heard some people find it very diificult. Are you allowed to take plenty of water to help you swallow it? Is it larger than a large multivit pill? Did they give you the dummy pill first to make sure it didn't get stuck due to stricture(s) ?

And there is the delicate issue of retrieving the Pillcam 'later on'. Not too bad if you find it on your first attempt, but imagine if you had to search for it for a week after swallowing it!

best wishes,
p.s. Liking your signature - I am a fan of Khalil Gibran too.
Hi Minx, It is actually a fairly hassle free deal as far as testing goes. It is only the size of a normal sized capsule and i had no trouble with it, thankfully it is disposable so there is no need to grab the fish net after to recover it.
They like for you to stay in the general area of the hospital and ask for you to wear it for 6 hours or so , just as you said because everyone is different.

Good luck and please let me know how things work out.
04-24-2010, 11:31 PM   #18
Journey
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Minx,

MR-enterography is an excellent way to assess strictures
without the x-ray.

Capsule retention occurs in 2% to 4% of suspected or diagnosed
Crohns cases. But you had CT scan, do you think this missed it?
04-25-2010, 09:15 AM   #19
Minxy
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Hi Journey,

I had MRI enteroclysis of the small bowel -- which found no strictures.
I was unsure exactly how reliable the procedure is for finding a stricture.
Do you think it is 100% probable it would find it if it was there?
If so, then I guess I should accept I don't have a stricture, and that the chronic partial obstruction I have in the small bowel is due perhaps to scarring or inflammation. Though I don't have much inflammation at present, but still get partial blockages, so maybe it is more likely to be scarring causing the problem.

If I were to have the capsule endoscopy could the capsule get retained in the small bowel due to inflammation or scarring do you think?
04-26-2010, 01:55 AM   #20
Entchen
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Just wanted to say hi and welcome, Minx!
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
04-26-2010, 06:44 AM   #21
Minxy
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Thank you for the welcome Kelly!
best wishes,
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