Short and sweet

[Noonecantellmewhatswrong]

Hello! My posts are usually long and detailed and I get the notion that is the exact reason why I don't get many replies :ywow:

Quick list:

1. Chronic upper abdominal pain attacks for just under five years
2. Alternate between d and c
3. Suppurativa hidradenitis
4. Hx of odd rashes
5. Anal skin tags (one is def from an old hemmy, other two no clue)
6. Hx of colitis in July of 2011
7. Testsinclude colonoscopy, endoscopy, CT, CT enterography, numerous ultrasounds, blood work.
8. Latest test was CT enterography, results showed normal small intestines, could not see large bowel, sacroiliac sclerosing.
9. Last colonoscopy was two years ago which was exactly 6months prior to colitis and ER CT scan that stated, " thickening of bowel wall in descending colon."
10. Intermittent knee, finger joint, wrist pain, sometimes heel pain.

Any thoughts? Ideas? Suggestions? Comments? Anything? Greatly appreciative of your time! :kiss:

 

[tots]

What kind of Drs have you seen?

lauren

 

[Noonecantellmewhatswrong]

Primary, two different GIs, obgyn, cardiologists

 

[tots]

How about a Rhumetologist?

They are great with auto immune disease

lauren

 

[Noonecantellmewhatswrong]

Maybe my GI doc can refer me. Thanks.

 

[dannysmom]

Hi ...
Did they take biopsies during your scopes? and were they all normal? (pls save copies of all of your tests.) Is another colonoscopy planned to check the colon again? Did the 'colitis' ever go away? (I should try to look for your earlier posts ... maybe there is more information in them.)

... No one can tel me what's wrong with my son either!

 

[UnXmas]

I often end up writing huge long posts. I'm not sure if that puts people off (I generally get helpful responses), but I'll be happy to read long ones from you or anyone else.

I was going to ask the same questions dannysmom did: what were the results of the endoscopy and colonoscopy? If they took biopsies during those, that should stand a good chance of ruling IBD in or out, and some other things too.

Oh, and I get skin tags too. They're just a result of straining, diarrhoea and tearing the skin for me. I don't think they signify anything other than long term problems going to the loo!

 

[Noonecantellmewhatswrong]

Out of three endoscopies the first one showed inflammation, so they put me on a ppi. The only colonoscopy I've ever had was negative and he biopsies for celiac and that was negative. The colonoscopy was before the colitis and that CT which said thickening of the bowel wall in descending colon. I do not have ongoing colitis, I still have days where I have diarrhea and mixed and can go up to five six times a day. The CT enterography I just had last week showed nothing with the small bowel, said they couldn't see large bowel due to not enough distension, and found sclerosing on my sacroiliac. When my dic gave me results by phone, he said that is usually consistent with ibd but the test itself was negative. I think he is going ton want another colonoscopy since it has been two years and I haven't had one after the colitis and other CT bowel thickening findings. I think I want a pill cam though. I was also diagnosed with hidratenitis supporitiva about four years ago and this can also be associated with ibd. I don't ever have blood in stools, once in a while on the toiletaper but I thought it was from a hem my that my dic now says I don't have but I do have anal skin tags....

Thanks fornall of the replies! It is so hard ton walk around all these years just knowing something is not right. And I do not fit the criteria for IBS.

Could you describe your pain, if any? Thanks again!

 

[UnXmas]

Could you describe your pain, if any? Thanks again!

I'm not sure if my pain is typical as I don't get much of it. Most days I get some crampling low down in my abdomen. It's usually before I need a bowel movement, and if it's going to be bad diarrhoea the cramping is worse. This is hardly a severe pain though - it's the kind you can live with, it's just uncomfortable.

Then I have had a few episodes where the pain came on suddenly and was limited to a specific place - either by my belly button or to the right of that. These episodes involve intense pain and nausea and could last a couple of days before gradually reducing. During that time I can't eat and can't do anything but sit with a hot water bottle clutched to my stomach. Once I went to the hosptial during an episode and they admitted me and said inflammation markers were up in my blood test and I had a temperature. I had a "flu-like" feeling too. They weren't able to diagnose me at the time though - the symptoms just went away on their own as usual. Luckily this hasn't happened to me for a while now though.

I've honestly no idea what your test results me - you're right it doesn't sound like IBS. I would have thought those tests would have picked up IBD, but maybe not if you weren't flaring at the time, and if your symptoms have worsened in the mean time it might be that repeat tests show something that wasn't there before.