Hello all. First time poster : )

By Exhausted1977

2 min read

I have been dealing with gi issues for a little over 2 years now. Very bad ones sadly. I have been scoped on 2 occasions twice down the throat and once from the rear. Doctors tell me it's not Crohn's or Colitis.

I'm not exactly sure what it is.

I'm here to maybe ask for some guidance as I am really at my wit's end.

I have lost my job my insurance and my home over this and my wife is terrified at this point.

So here goes, I have always suffered from depression and eating was my escape I was over 400 pounds and ended up with edema in my legs badly which sent me to the hospital. In the hospital I was given antibiotics for a tooth infection as well then I ended up catching CDIFF! The CDIFF was cured by more antibiotics and now here I am.

My GI issues have gotten worse and worse to the point I can only eat potatoes, yogurt and bananas. As a 6'1 male I am barely 200 pounds now. I have been told this is all in my head, I have been told after multiple ct scans they can't find anything except some redness and irritation. I have been on over 60 medications in 2 years and still, nothing has worked.

Some of my symptoms include really bad gas after eating, to the point I can feel it rumbling in my bowels. Burning in my bowels 30 minutes to an hour after I eat. Severe headaches and eye redness. Terrible rashes that can sometimes cover almost my entire body. ( Which for some strange reason I was given prednisone and it cleared up almost instantly)

If I take an NSAID I'm in bed for days. Antibiotics now give me excruciating pain.

Horrible cases of fatigue and weakness, Very VERY bad abdominal pain. What I can only describe as what feels like tremors in my legs.

This is all after eating and also bad enough that it has sent me to the hospital on multiple occasions.

If anyone can offer me any kind of help or feedback I could possibly use even if it's just how they finally got diagnosed or things I may not be saying right to the doctor's? Anything at all I would be forever in your debt.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Eshani Agrawal Moderator & Contributor
Hi <inline-mention username="Exhausted1977" user-id="4522391"/>, I'm so sorry you're going through all this. I'm also sorry that your doctors have written you off, which is so unfair! It's clear that you're suffering. Have you considered a second opinion at all? Even though the colonoscopy is often the gold standard for diagnosing Crohn's or UC, it's possible that both diseases can be missed as well. So it might be good to talk with another GI specialist and see if they have recommendations for next steps for testing. I also think it's vital at this point to be firm with your doctors. Maybe saying something like, "You're telling me this is all in my head, but I'm losing weight, can't keep food down, I'm having pain and fatigue. Even if you don't think this is UC or Crohn's, it's clear something is going on with my body. So if you were in my position, what would you want a doctor to do?" Also, have you had any blood tests or stool tests? These might be avenues to look down too. Once again, I'm so sorry you're going through this. Please do keep us updated! <3 -Eshani (IBD Team Member)
thedancingcrohnie Moderator & Contributor
I'm so sorry you are going through this <inline-mention username="Exhausted1977" user-id="4522391"/> Have you had a colonoscopy done with biopsy? It could be a chance that you have microscopic colitis which could only be seen by taking a biopsy. I would talk to your GI about this. Also perhaps you have some disease happening in your small intestine which wouldn't show in a colonoscopy. You can request for a pill cam which shows all of your intestines. I hope this helps some. Big hugs, Elizabeth (team member)
Maria333 Member
I am brand new to this discussion. Similar to the original post, they are not sure what I have except that I do have cat scans which show colitis. My colonoscopy showed inflammation but the biopsies were clear. I have gotten progressively worse and based on one of my blood tests, they are going with Chrohn's or UC rather than IBS. My problem is I have colitis with constipation. This has been very difficult to treat because most doctors just say it is constipation (because they do not really read the scans). Does anyone have suggestions for constipation relief with inflammatory bowel disease. I am in pain all the time and miralax causes cramping. I take MOM but that is now further inflaming .
1. Eshani Agrawal Moderator & Contributor
 <inline-mention username="Maria333" user-id="4554626"/> I really hope the oil rub helps you! Have you been able to get a second opinion as well? It sounds to me like your current doctors haven't been the most helpful, so I wonder if checking in with another doctor would be good. I have started seeing an IBD specialist instead of just a general GI and I've seen a big difference in my level of care! -Eshani (IBD Team Member) 
2. Maria333 Member
 <inline-mention username="Eshani Surya" user-id="2483710"/> - I have gotten many opinions. I have been dealing with this since 2016. It is progressing. Some GI's still say it is only IBS-C. Then others go the extreme and say take Humira. I am allergic to mesalamine but that worked well (although it did constipate). And, of course some GI doctors immediately say I am a professional woman with work stress so that must be it. It has been very frustrating because constipation throws them off. I am taking magnesium and Trulance but neither does a complete job, so more pain. Although I have two friends with UC and they have constipation all the time but they can eat things that I can no longer ear. I can't have veggies or anything like that-just white bread, protein, which of course contributes to constipation. It is a tough problem 😀 Thanks again. I really appreciate the helpful response.

Community Poll

What topics are you interested in learning more about?