Question for small bowel only and/or no-D folks

[SilverThoughts]

I was wondering if anyone here with CD in small bowel only (currently or at diagnosis) can describe their symptoms to me? Did you have strictures (and what were the symptoms)? I'm also interested in hearing from those with little or no diarrhea.

Any info would be great, thanks.

 

[blessedwithfour]

hi. i have very recently been diagnosed. CT scan shows thickening in my small bowel ONLY. The colonscopy showed the large bowel to be clear, but the scope was unable to enter my small at all. so they say 99% sure its crohns. they are treating as it is until the next scope where they can biospy. i also was told i have ione stricture. my symptoms started in march. pain all around the belly button area with noticable swelling. very very tender to touch. very painful gas type pains, with the added feeling a knife jabbing you. passing gas provides huge relief and does going to the washroom. generally each morning in the first hour im up i have 4-6 bms, then nothing till next morning. these are my habits and symptoms while on pred, prior to pred, same kind of pain but way worse and bms were up to 20 or more a day with blood and yellow mucus. TMI im sure! lol hope that helps!

 

[DustyKat]

Hi and :welcome:

Both of my children have ileal (small bowel) Crohn's and their's is fistulising. They never had diarrhoea pre diagnosis or pre surgery but their presentations were very different.

My daughter went undiagnosed for 18 months until emergency surgery. Her symptoms for all but the last couple of days were upper epigastric pain, headache and sore eyes which was sometimes accompanied with vomiting, knee pain and weight loss. No diarrhoea, no bleeding and probably more tended toward constipation. Her blood results always returned as normal as did CT Scans and X-Rays.

My son was diagnosed very quickly and with few symptoms, Sarah's legacy and my gained knowledge over the past 5 years no doubt! :lol: He had one week of some random vomiting and loss of appetite. I asked for inflammatory markers to be done and they were raised...he had his diagnosis a couple of weeks later. His bloods were and are always reflective of everything that was going on whereas outwardly he would appear quite well. Just the opposite to Sarah.
He quickly developed complications of an abscess and fistula and they presented as RLQ pain that extended toward his navel. He described it as a tightness and burning.

Dusty. xxx

 

[SilverThoughts]

Thank you both for responding; the symptoms seem so different for each person. Hopefully more people will respond to this thread.

I've been having bouts of abdominal problems since the beginning of this year and will hopefully get an appointment with actual GI soon. It happens every few weeks and lasts about a week on average. Basically, my entire abdomen swells up and starts rumbling constantly (not at all like stomach rumbling), and I feel completely full. If I eat more than a small amount I get nauseous and throw up. I have lost a lot of weight because of this. Often I have a low fever, but my bloodwork is normal. My BMs are mostly normal (once or twice a day).

I also often have a localized pain in my lower right abdomen. Because of this, they thought it was my appendix. I ended up at the ER where they did a basic CT and everything was fine - no inflamed appendix but also nothing else that they could see. It seems to me like maybe I'm having some sort of partial obstruction (caused by who knows what) that comes and goes.

Is this possible? Or does this sound like something else? What other tests might they run to have a better idea?

 

[DustyKat]

The pain in your right lower abdomen could mean inflammation of the terminal ileum. If you do have inflammation it can cause the partial obstructions because the inflammation narrows the bowel.

A CT Scan won't always visualise inflammation, my daughter was testament to that, so the best test to have is a colonoscopy. It will visualise the full length of your large bowel and into the beginning of your small bowel (terminal ileum). They often do an endoscopy, upper end at the same time and this will visualise down as far as the duodenum, the start of the small from the top end. That still leaves most of the small bowel unseen so even if those two tests are normal you may need to go to something like capsule endoscopy or CT/MR Enterography to see what is happening in the rest of the small bowel.

Dusty.

 

[new2crohnsMH]

I currently "fit the bill" for what you're requesting. I have severe small bowel crohns, mainly concentrated in my terminal ileum and ileocecal valve. A stricture is present in the area and my ileocecal valve does not function 100% as of a colonoscopy done a few weeks ago. The stricture was dilated and I feel a short bit of relief, but it may not last as it was just dilated about 3 months ago.

My symptoms are mainly strong pain in the lower right and occasionally in the lower left, although mostly on the right. I have alternating bouts of diarrhea and constipation. It is ALWAYS one or the other for me. Rarely do I have what most people would consider a normal bowel movement. I sometimes can feel pressure building in the lower right when in pain, and I assume this is intestinal contents getting stuck in my stricture and malfunctioning ICV. I also experience headaches and joint pains, mainly in my back and knees but my back could be exacerbated by my severe scoliosis. Either way, it hurts like hell. I also have a funky symptom that no one has explained, which is a cold feeling that I occasionally get in the insides of my ears. Weird huh? I also have to deal with poor sleep as a result of all of this.

I started on Cimzia today in an effort to treat the inflammation. I have previously been on Azathioprine, Imuran, and Entocort, all to no effect.

Hope this helps.

 

[archie]

Yea I had crohns in the small bowel which resulted in a ft long stricture at the terminal ileum. It started nearly 2 years ago as a gastritis pain just above my belly button then steadily progressed to a pain and swelling in the RLQ. I never really suffered diarrhea either. I have since had surgery to remove the stricture and so far so good. You need a small bowel series to see the extent of the narrowing. All my tests were in keeping with crohns and my CRP was raised to about 60-90. hopefully this is helpful

 

[Grumbletum]

Hi there. My first flare started with what seemed like a stomach bug: pain, vomiting and D. But after a few days, the D stopped but the pain remained, I had repeated UTIs that wouldn't clear with antibiotics and I lost loads of weight. Pain was mainly in the LRQ and pelvis and was sometimes aching/burning and sometimes stabbing. Oh and I had the noisy tummy too hence the username!
Docs thought grumbling appendix too. Bowel narrowing first showed in an ultrasound, then Crohns confirmed by Barium FT and abscess and fistula diagnosed by CT. Then a colonoscopy which showed my ileocaecal valve was 'inflamed and rigid.'
I hope you get a diagnosis and on to the right treatment plan soon. X

 

[leithcote]

My Crohn's is confined to the terminal ileum. I have had episodes of very limited diarrhoea, but this isn't really a major symptom for me. When flaring, I have persistent nagging pain on the right hand side - essentially where the appendix is sited. I feel like I have a cold or flu, and start running a bit of a temperature. Tiredness and lethargy is also a major symptom. I get problems with my joints, especially in my knees and knuckles, and also suffer with a bad back. My consultant suspects that I have some stricturing, and I'm scheduled for surgery in early Feb next year.

Hope this helps - any more questions just ask!

Tony.

 

[SilverThoughts]

Tony - your symptoms sound most like how I feel 75% of the time. I also have joint pain. The other 25% for me is massive bloating and grumbling (great username Grumbletum) with inability to eat, which could be a sign of a complication. When this happens it's very uncomfortable but doesn't seem bad enough for a trip to the ER (and I know it will get better eventually). But I could just be telling myself this because I hate hospitals.

Tony, how was yours diagnosed/what tests?

archie (or anyone) - how is the small bowel series different from the general CT they do for appendix, etc? Did you start having any problems with D after the surgery?

And another stricture question for anyone - how do they determine that it's bad enough to do the resection as opposed to dilation or other treatments (drugs)? I know I'm getting ahead of myself, but some doctors are a bit too excited about the prospect of surgery.

 

[leithcote]

SilverThoughts - I also sometimes get uncomfortable bloating and distension - but I find that the Lansoprazole I'm taking keeps that fairly well under control.

To answer your question, I was finally diagnosed after a Colonoscopy, where they discovered ulceration, scarring and inflammation in the ileal region, consistent with Crohn's. Also, my previous history was taken into consideration: several trips to A&E with presumed appendicitis / grumbling appendix. I was actually originally diagnosed with Chronic Fatigue Syndrome, but turns out it's all due to Crohn's!

My consultant is pretty sure I have stricturing/scarring as I frequently get extremely tired, and display a temperature (cold-like) which resolves itself after a huge "whooshing" sound and obvious movement in my bowels!

I'm still flaring despite being on immunosuppressants, hence the surgery route.

Best wishes, Tony.

 

[archie]

Hi again my symptoms were very similar to Tony but I developed an abscess which caused a perforation which although I was extremely ill at the time it had contained itself and was treated with IV antibiotics, the surgeon at the time said it would need operating on the remove the damaged bowel due to the risk of re perforation. I was on pred and pentasa but he said that the bowel was beyond repair with meds hence the surgery and TBH it was the best thing I did I feel generally normal since and have normal BM occ constipation occ diarrhea but not a problem.

The small bowel series is a set of x-rays whilst you drink a contrast drink and it shows the length of stricture and extent of narrowing it's a fairly standard test for crohns. I too asked about a strictoplasty bit again the surgeon said that wasn't an option due to the damage to the bowel wall.

 

[SilverThoughts]

Thanks again! Everyone here is so helpful and open.

I take it the difference between the basic CT I had and the SBFT has to do with time? For mine I drank the icky barium stuff continually for an hour and then they then took me in for the scan with the contrast injection. The actual scan part took less than 10 minutes total. Is it different for the small bowel one?

 

[Grumbletum]

Hi again Silver
For the SBFT, you get a much thicker, sort of chalky barium to drink about half an hour before the scan. It's really yummy................not!! Then over the course of about an hour, they will take a scan picture every 20 mins or so. If you do have a stricture, it should show in this test as it will probably slow the barium going through your system.
Don't be alarmed, but you will have white poops for a few days afterwards and need to drink plenty of water to flush it out. And plenty of hot water down the toilet as it's pretty hard to get rid of!