Hey guys

So my J-pouch has been quite troublesome for about a year. Early issues turned out to be because of NSAIDs that I used to treat what later was diagnosed as Spondarthritis. I take Enbrel/Etanercept and I am more or less symptom free when it comes to joint and back pain as well as fatigue due to inflammation.

Lately though my pouch troubles have reached a point where I decided to take action for real. What triggered it was anal itching that kept me awake all night. I still don't have the itching under control and Please do not suggest another cream. Creams are not the solution.

I learned earlier this year that I have chronic pouchitis. They took a biopsy in my pouch mucosa. I am positive that BM's cause itching because they are usually perfectly aligned throughout the day. One or two BM's in the morning, no itching, then slowly more BM's throughout the day and more itching until I itch constatly til after midnight. Then I'm a zombie the next day.

Well anyway, last Tuesday. At 3 AM I realized I will not be able to go to work and decided instead to go to the hospital after a couple hours of sleep. I live in Sweden so if you want "immediate" help I have to go the emergency room. When I say immediate I mean some IV fluids within the first 30 minutes, on a good day. Then it's hours of waiting - hopefully in a hospital bed but that would also only be on a good day. So this was a particuarly good day and after waiting for 4 hours or so, explaining my condition that is (and I'm sure you would all agree) obviously completely unknown to 99 % of health care professionals - they managed to talk to my surgeon who decided to hospitalize me.

Here's where my point really begins, if you don't want to read the whole thing:

A surgeon treats my pouchitis. That's the way it is here... and when I say treat I mean prescribe antibiotics and give vague life advice like "drink fluids", "sleep well" etc. Pouchitis - at least in my case is an inflammatory - auto-immune condition. There ought to be the way more options than antibiotics and life style adaptation. And of course there are, like Entyvio, Stelara etc. I don't want to complain about my surgeon though, I think she does her best. She spoke of referring my to a gastoenterologist who should understand this better. It is frustrating though that I never had a steady contact with a gastroenterologist in the first place - it would have spared me a whole lot of suffering (potentially)... having surgeons and their antibiotics treat a person with IBD is stupid!!! Is this the case in whatever countries you live too? So anyway... I was hospitalized for four days so that they could do all kinds of tests in house. Blood work, fecal, MRI, endoscopy etc. I am still waiting to hear what the result of it all is.

Now I am on sick leave from work. I have a guilty concience kind of. I don't feel that much worse than the last couple of months when I have worked full time. I have suffered, I have been tired, had troubles with BM's and itching at work, not getting enough sleep - but I have forced myself to do everything I had to at work. Now I know I could go work - do an adequate job albeit feeling miserable but I choose to stay home because I have a doctor's note...

Well to sum it up, this post turned out way longer than I would ever read:

1. Former UC, also Spondarthritis (doing well thanks to Biologics!)

2. Went to hospital because my butt itches, they ran a whole bunch of tests - no results yet

3. I am frustrated that surgeon treats my pouchitis when it's an inflammatory disease, there are other professions with more knowledge about treatment of inflammation

4. I am on sick leave

Original Post

Hi Fredrik,

 I sympathize.  Have you attempted the FODMAP (Monash univ. in Australia) diet?  Its not in an of itself a cure - butt (aha) it does provide the first applicable helpful food info I've seen since acquiring UC at 10 year old. I'm 54 now with no colon having had UC then getting cancer.  I tried every most diet, drugs, regimes..its the autoimmune disorder we stuck with having to treat symptoms to manage daily life.  I struggle with this as well, I really don't know how to get through some days.

the itch is awful.  some things to try:

 

the drug Questran is a bile acid reducer that can contain the itch if thats the cause of itch for you. its a script here in US.

sitz baths with epsom (make sure you dry completely after)

washlette /bidet toilet seat attachment

the creams are many - 

calmoseptine otc, nystatin (via script here in states), dimethicone wipes when all else fails, anti fungal creams for bottom, line undies with some gauzy cotton fabric to contain the cream :-)  

and my fav is sun..open it up to the sun.  Feel better

 

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