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New, need a little advice

Hi everyone, I'm new this forum. I am undiagnosed. Currently, I am at home sick, and I am on my second day of rifaximin treatment.
To tell you a bit about myself, I'm 27, and I've had bowel problems since I was about 15. In the beginning, the doctors thought I had giardiasis. Then it was helicobacter. I also have fructose malapsorption, and good old IBS. In between, I had some gyno problems, and had cysts and polyps removed. They talked about endometriosis, pelvic inflammatory disease, etc. But nothing was ever set in concrete. In the meantime, I kept having (and still do) have these bizarre stomach episodes, which are getting more frequent and frightening. Say I'm feeling well for a few days: suddenly I get hit with a really aching, flu-type feeling, and headache, which seems to centre around my eyes. I can't move, all I want to do is sleep. I start to get really bad bowel cramps (usually after dinner, at night), but my stomach (which is normally disgustingly noisy) doesn't make a sound. It's like something is stuck. I bloat up and my stomach distends. I will develop a fever fairly quick, and I'll be drenched in sweat (I also get really bad night sweats). I sit on and off the toilet for hours, but only little bits of stool come out. The pain is unbearable, like nothing I have ever felt. But nothing moves. Then suddenly, I get this explosive diarrhea, and it lasts for a couple of hours, until I feel empty. But following these attacks, I have freezing chills, and I am very tender to touch, and I will sleep a lot after these attacks. I cannot keep food down (or in) for usually about a week or two. I have really bad gas and diarrhea (that smells horrific). Then I might get a few days where I feel relatively normal. Then it all starts again... Other things- Had a lot of probs with my skin (rosacea keeps cropping up), get a lot of tearing/fissures around my rectum, spotting blood, very mucousy stools, back pain, painful sores in my nose, sore joints.

So far, my gi's tests came back negative, or 'slightly inflamed.' It's annoying coz the only time I can go to the pathology to do my tests is when I feel reasonably ok, so my tests come out ok. Know what I mean? I feel like I wish my doctor could see me at my worst, during one of these attacks. My first gi kept saying it was ibs, and 'eat more fiber' but it was like eating razor blades! This new one I have been seeing is giving me rifaximin at the moment, but I think he is unsure about what is going on, that it 'could possibly' be crohn's, but he wants me to take the rifaximin and 'see what happens.' These tablets are giving me terribly painful gas. I feel rotten, and very depressed. I don't know what to do. I will see out the treatment, and then I have to see him in 6 weeks. Sorry for the long post, just needed to vent I guess.
 
oh and since i have been on rifaximin (2 days), been having weird, painful, thin stools, very hard to pass. I really feel like something is blocking the way, in my lower abdomen. anyway, thanks for reading... :)
 

David

Co-Founder
Location
Naples, Florida
Hi Kell and welcome to the community!

When you say your GI's tests come back negative, what specific tests have they done? Colonoscopy? Have you had an MRE or CTE? Capsule endoscopy?

How about stool tests such as fecal lactoferrin or fecal calprotectin?

That'll give us a little more to go on.

Thanks!

We're here for you :)
 
Hi David,
I know that I have done blood tests (they never tell me what they are actually for), I have had a gallbladder test where they injected me with something and watched my gallbladder and did ct scans on it, and the last time I did a colonoscopy/gastroscopy was last year sometime with a different doctor. I hope that helps a bit, sorry it's not very descriptive (i feel a bit left in the dark). And another thing, I get urinary tract infections very often, and I told the doctor this the other day. I get them 7 or 8 times a year. I recently had a whopper kidney infection. I don't know if this helps.
Thanks, Kelly
 
Oh and I have had stool tests, but I don't know what type. And the thing that bugs me most is that I always go for these stool tests when I am feeling WELL. :S Do you think that matters? I feel like if I could do one when I am flaring up, it would be more informative?
 
i cant help you much, but 1 thing 1 know for sure is not to increase fibre when you are having diarrhea. i watched a show about IBS and the 1st treatment the specialist put tte patient on was cut out all fibre, fruits and vegtables and see what happens. he said well cooked carrots and potatoes and very ripe bananas are the only fruit and veg allowed. The patient felt better after 1 day so it wont take long to see if it helps you, just till you get a proper diagnosis. also all us crohnies and uc'ers eat a low residue diet when we are flaring.
Your doc is crazy saying eat more fibre.

Anyway hang tough. hope you get some answers soon.

Ju
 
Gosh, sure sounds like Crohn's to me. Those are all my symptoms when I am in a flare of Crohn's. I would certainly push with your doctor for another colonscopy and have them test for Crohn's or IBD. Be pushy with your doctor. Immodium helps me during the diarrhea spells.

Good luck to you! Keep us posted!
 
Well I finished my rifaximin. It was...an interesting experience? But the dr didn't tell me what to do after. Like, should I take probiotics to build up good bacteria in my stomach? I have no idea. My stools are still pretty bad, but I haven't had a flare. The stools are still really thin though, like something is stuck, and everything has to get around whatever is blocking the path? Does that sound weird? And I have a couple of really sore fissures. Bleh. Anyone got any tips for fissures?
 
For fissures, my doctor prescribes me canasa suppositories that helped. Also I wipe with preparation H wipes whenirritated and use Tucks cream, it's OTC, for pain and irritation.
 
Hi there.

You may have thought of the following, but its what came to my mind. Hop it helps:
Has your doctor done any imaging of your intestines, such as mr enterography, or ct enterography? The reason I ask is because what you described in your first post on this thread sounds an awful lot like what people describe on this forum when they have obstructions in their small bowel. With crohn's, these are usually caused by strictures. Without some sort of imaging, the doctors cannot diagnose this. A colonoscopy can only see as far as the terminal ileum, but if you have an area of small intestine that is narrowed located farther up than that, a scope won't see it.

So, just curious if your doctor is considering this.
 
I have thought about that myself, but I won't get to see him until October 18. I'm wondering if it's worth me trying to get in earlier (I don't know how, but I could try). :S
 
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