Hello all, just a little vent / confession to make.

Ive had a jpouch for over 10 years now, this April, and it has been a roller coaster of a time. Generally good, but suffice to say my surgeon did NOT warn me about pouchitis, and I was very saddened to learn that many of my symptoms had returned in spite of a full colectomy. My main goal was to avoid steroids (namely Prednisone) at all costs because long term use of it for his asthma eventually brought my dad to an early grave. I'd have to use it every now and then, but I've tried antibiotics and probiotics mostly.

Well, the time has come when probiotics are too weak, or they are too disruptive in that they cause more problems than they solve. Antibiotics are too weak to work or too strong to take for long, and the symptoms return almost immediately after I go off the strong ones (while I'm on Cipro I feel GREAT).

Now I find myself bargaining with myself, trying to see if it's worth following in my dads footsteps in order to live my life as I like, because I'm definitely not living the life I want to now. I'm very close to becoming the shut in and pain stricken person I was when I decided to get the surgery in the first place.

Have you ever reached that point where you just want to say screw it, I want to do these things despite the long term outlook? I'm talking to my own self on my deathbed many years from now and I'm telling my younger self that I'd rather have had 25 great years with my wife, family and friends, than 40+ as a perpetual sicko. This is the exact decision my father had to make.

Do those of you who take steroids chronically have to gradually increase your dosages? I'm afraid if I stArt low with 5 mg a day I'll eventually have to go to 20,30 or higher mg to maintain the same state.

Thanks for reading / listening. I'm kind of in a blue mood tonight.

Sorry about your predicament.

I can't help you with the prednisone questions. I personally vow never to take that again unless it means choosing life over death. It is too disruptive and damaging to one's body long term.

Have you considered or would you consider going to a permanent ileostomy if your pouchitis cannot be controlled to your satisfaction?

Marquis,
I am so sorry that you are living in this hell and that you must make the choices that you do...as a semi-regular shut-in I know how you feel...we all make choices every day and even if we don't realise it at the time most are long term...that said I am a 'quality of life' kind of girl...I have consistently chosen surgery after surgery to keep my k pouch over than to give in and accept a bag...that for me is my quality and choice and I assume it fully...Steroids are a whole other set of choices...They are nasty things to be on for long term usage and can do a number on all sorts of bodily functions...why are these your only 2 choices? Steroids or not? Are there no other choices like bag/k pouch (which for some strange reason seems to suffer from less pouchitis than the J pouch???)...can you not discuss other options with your G.I doc and surgeon?
I hate being backed into a corner like that & feeling like it is black or white with no grey...are there not other types of probiotics to try (sometimes pharmacutical grade ones that have to be refridgerated can be beneficial to you..But they are expensive); have you tried an ilimination diet? Removing all milk products from your diet for 4 weeks and then trying another food group like wheat or sugars?
I am sure that you have pretty much tried everything but I am desperate to give you another door to push than hopeless shut-in or swollen steroid laden dad...
Good luck no matter what the choice.
sharon

There is another choice - I had my pouch removed at 31 (9 years ago) because of chronic pouchitis and have never had to take a GI drug since. I live a very full and normal life - I had two babies post pouch removal - and my life expectancy is the same as any other healthy person.

I know it is a hard choice and for some people not something they would do but for me it allowed me the quality of life I want AND a normal life expectancy....

My experiences with Pred have been mixed. The first time I used it for UC I was walking down the street and realized that if anyone "crossed" me I would likely do grievous bodily harm to them. Needless to say I stopped using it. 15 years Later on a lower dose I had no problems but after 6 months my GI took me off because of the long term effects. You might try Entocort which is easier on the body, I didn't find it as effective. As others have said the alternative to the pouch is the ileostomy which would be my choice over long term pred use or a shut in life
Good luck with what ever you choose.

Thanks folks; feeling better this morning, but the question still remains.

I've tried gluten-free diet, lactose-free, low-roughage, etc.

I'm sure it's a 'bad bacteria' issue, with the efficiency that the anti-biotics work (the strong stuff, that is). I've tried Acupunture, holistic remedies, I used to take a daily dose of tetracycline, and that seemed to work for a few years. I may need to find a slightly stronger AB but not a heavy one.

I'm talking to my surgeon on Monday, but I think I may need to actually see my old GE doctor, as I wonder how effective my surgeon is at pouchitis treatments (seeing as how it didn't occur to him to mention it before my surgery).

So, yes there are some corners I haven't explored completely; that's why I'm glad to be able to come here. But one thing I can not abide by is a solution that's worse than the problem, and right now the steroid solution, as heinous as it is, is still not as bad as some of these other ones.

That said, a combination might work well, too: Using steroids to keep the inflammation down while I give the AB more time to work. Will see.

Thank you for your thoughts; this is one of the most kind-hearted (and informational) forums on the web. It seems that even healing and health forums have a glut of trolls who will attack you for posting the most innocuous questions. Glad you folks aren't a part of that. :-)

Marquis...as one of my kindly surgeons once said to me, 'we are surgeons, are job is to cut'...that said, some are very up to date on the medical/G.I side of life with a pouch but most aren't...that is where a really good G.I. or Family doc come in...
Go back to your G.I. he you like him and had good results.
Sharon

Thanks, I wish my surgeon had remembered pouchitis when I'd asked 'What are the possible side effects of this type of surgery?'. ;-)

Yes, indeed I am going to see my GI; he's very good and hopefully he'll have some input on this situation.

Go to cleveland clinic. Dr. Bo Shen is a pouch specialist and has helped a lot of people on this board who thought they were going to have to lose their pouch or thought they were out of options.

Thanks Liz! I'm going to contact him and see if he has any suggestions for a San Francisco Bay Area doctor. Otherwise, hellooooo Cleveland!

If you have any questions or want help with it, send me a private message