Skip to main content

Good Day everyone,

I am 22 (male student) and  have had my J-Pouch surgeries last year and overall I think I had a brilliant outcome with now 1-3 and mostly 2 stools daily. I take two Imodium before sleeping and normally do not have leakage.

What isn't going well is my extreme fatigue. I have been diagnosed with  Addison's desease 2 months ago but the Hydrocortisone isn't working well or my dosis isn't ideal.

Two days ago I had bloody stool the second time with my pouch. The first time it was Pouchitis but I think I have had the Pouchitis for several months because the stool frequency dropped from 5 to 1-2 after 2 weeks of metronidazole.

Does anyone have experience with a pouch and Addison's and its impacts? I felt, when I had to stop taking the cortisol asmas if stomache got aggravated (normally don't have stools in the morning). I've got serious cramps when I take the cortisol which go away after going to the toilet, which seems crazy because also Pantoprazol helps a bit.

Further, which role does stress play in Pouchitis? I normally doing a lots of sports and really enjoy doing a lot of work for uni. I really can't feel when my body has enough!

Recently, I've got fatigue feeling like UC which makes it even hard to have a conversation. I nearly fell asleep while sitting on my mountainbike!

I know I am lucky and don't want to "whine" but when I see blood I'm completely desperate after 40 times toilet with UC. Further, the fatigue doesn't let me do anything and sometimes awake in the night. This is especially bad as I am a person who can't stand taking a break...

Thanks  ahead,

Gerd

Original Post

Replies sorted oldest to newest

Gerd, the extreme fatigue is exactly what Addison’s Disease does. The only way to clear it up is to get adequate treatment. If you can’t take the medicine for some reason it’s important to contact your doctor to discuss alternatives. Addison’s disease can kill you if it’s not treated properly.

I’m not sure how the pouchitis diagnosis was made, but it’s possible that it was incorrect. Antibiotics will reduce stool frequency for most people, whether they have pouchitis or not. My suspicion is that you may have cuffitis, and it could easily clear up once your steroid dose is adequate.

I’m not sure what your stress question is, but I don’t think stress is causing any of the problems you have described. Good luck!

For fissures, I went to my doctor and they “sealed up” the fissures with a sort of purple type super glue. It was painful, but it helped in the following days. I was prescribed a prescription cream, but I don’t remember the name of it but it did help.

Stress is directly associated with pouchitis and many other diseases. I’ve been told that time and time again by my surgeon and doctors. I live in Minnesota, which is prime for healthcare in the US, so I tend to believe them about the Direct effect of stress.

Hi Gerd.  I have a J pouch (2017) for UC and I also have Addison's.  I also do sports (or at least keep fighting the good fight to continue kayak and canoe rack g and cycling.  I have had episodes of pouchitis for which Flagyl works moderately well.  I have fissures frequently with spasms, burning and pain.

Addison's is hard to deal with. I get fatigue, muscle spasms, weakness, strange tight dluttering in abdomen, thin fragile skin with easy bruising.  At times, the abdominal muscle contractions are very strong and  uncomfortable and I cannot exercise when this happens. My sleep is poor most of the time.

Just thought I would  share and support you as my journey sounds similar.  Take care.  BTW my Hydrocortisone dose is almost physiologic at 22.5 mg daily divided into doses: 12.5, 5 and 5.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×