Seeking advice

[Wolf]

Hello and thank you for listening.
I am a 43 year old woman with lupus. For many years now I've had a problem and it is getting worse and worse. I'm hoping someone can tell me if this sounds familiar, and any recommendations. I haven't several colonoscopies, endoscopes and CT Scans. I will say that one CT Scan in the ER showed "Thickening of the lining of the ileum" and the ER doctor who looked at the CT scan himself was a retired GP and said "You have crohn's. I've seen this before" (not that his saying that helped anything, but I was glad SOMETHING showed up)

So here is the situation: About 5 minutes before I need to go to the bathroom (sorry I don't know if you guys have slang or abbreviations you use here so I'll be as tactful as possible) I get severe abdominal pains. I'm talking about a 10 on the pain scale. I will sweat so profusely that it looks like I have showered. Many times I throw up, not from nausea, but from pain. A couple times I have passed out. Then once I'm able to go (It's always diarrhea when it is painful) the pain is gone. Over and done. Three times I've ended up in the ER because this had lasted for more than 8 hours and I couldn't take it any more. It wasn't steady for 8 hours, but about ever 20 minutes the pain would hit, last about 10 minutes with no results and go away. I picture in my head that it was like a battering ram. It tried for a while then gave up only to start again. Nothing they did helped, it just had to take it's course and finally batter it's way out. (I'm sorry this sounds so gross, but I mean that is what this is about, right?) The doctors have never found anything in colonscopies and the pain is not there if it is a normal BM, only diarrhea. I may go 2-3 months with no problems, then it's back for several months.

I can't eat out anymore, I only go to the doctor because I'm afraid it will hit and I can't get to a bathroom. I am in a wheelchair because of the lupus so finding an accessible bathroom is even more of a problem.

I have noticed when I have a lupus flare and I'm given steroid bursts, it will stop the pain while on the burst.

Anyway I know you can't diagnose me and really a name probably wouldn't help anyway. I just wonder if anyone has symptoms similar to mine and have found a way to make them go away, or lessen? I've tried a food diary, I only know for sure carbonated beverages bother me, and spicy food possibly. ANY help would be greatly appreciated. And if what I am discribing is nothing like anything you all have, that would be good to know as well.

Thank you

 

[Scipio]

Clear colonoscopy coupled with abdominal pain that goes away upon bowel movement is one of the symptoms of irritable bowel syndrome (IBS). I suggest you consult with a gastroenterologist and specifically ask about the possibility of IBS.

 

[Dyana]

I have periods of what sounds like your issue. I call it severe cramping. Like my intestines are being squeezed so tightly I think they will split. I can pass urine but only urine. I have gone to the ER a couple of times because it was so painful and then after finally having "D" been fine - until the next time. Might be a few weeks or a month of more. I do have Crohns- 5 surgeries- removed parts of colon, scar tissue, ilestomy, reversal etc. What I think helps- And I am NOT a doctor. My GI gave me a small Rx for pain med. If the pain is so bad I need the meds- I take the med and if I STILL can not clear my colon I take 1/4 of the usual dosage of MIRALAX (generic- it is the same). This seems to help my colon to clear- once clear I am fine. Sore for a couple days. Intake only liquids and gradually get back to normal in a couple of days. Dr is going to do another colonostomy- Decembers' was OK but this issue is happening more often now.
good luck- you are not alone- hope this helps

 

[Wolf]

Thank you so much. I went on a low fiber diet to see if that could let it rest. It did help. I think it’s time for a second opinion.

 

[cmack]

Welcome Wolf,

I'm sorry that you are experiencing this. If that doctor thought it was crohn's it very well may be. Thickening of the lining of the ileum could be caused by inflammation or possibly scar tissue. Either way I believe it is causing chronic partial obstructions by the sound of it. I would try to get another opinion soon from a GI on the cause of this inflammation and painful movements. You have my support.


Best Regards,

cmack

 

[scottsma]

I don't think a colonoscopy goes as high up as the ileum.You might need an endoscopy to see if you have inflammation in that area,Something needs to be done,that's for sure.