Hey gang,

As most of you know, I've been having major problems with my pouch. As a last resort, or at least to hold me over until surgery (having pouch and rectum removed, probably get a shiny new K pouch or a BCIR) my doc put me on Immuran, and Entocort along with my usual cipro, flagyl, Nexium, Percocet and Gravol. Problem is, I've had to stop working and go on disability. I could barely make it to 1pm, and then be so exhausted I couldn't ever stand! I believe it to be due, in part, to these meds, that, and the constant pouchitis. I get so dehydrated, and believe me, I've tried everything on the market and then some. Problem is, at times, I loose it faster then I can take it in (did I mention the neasea from hell?). Have you ever been on these meds, and if so, did they wipe you out too? Just curious, hopefully I'll get to see my surgeon soon and I can finally stop taking everything, it's killing me slowly, and my liver must be screaming! Thanks,

Cheers,
Eric

Hey Eric,

Sorry to hear that you are having so many problems. I have had to stop working as well due to chronic fatigue, chronic pain, fibromyalgia, osteoarthritis, and three herniated disks in my back. The jpouch suprisingly, is the least of my problems!! I know the feeling, medications have made me sick and in the long run do not help.

I have been off work for two weeks, and I am trying to reduce the medications I am taking. I know from previous experience that I cannot tolerate long term meds. I have tried and currently use marijuana for my aches, pains, and loss of appetite. It works far better than any meds out there. Availablility, however, is an issue.

God Bless,

Markus

Hey Markus!

Thanks for your response. I love you're idea, but you're talking to one of the very few people on this planet who is allergic to pot! It's a terrific medication for GI patients. It's numbs the pain, and increases the appetite, AND, in my province, I could even get a prescription for it! Figures! The most beneficial drug, and I can't take it! I use Percocet, it does help though, just don't like having to rely on it!

I was put on Imuran many years ago to treat UC. I was not taking the rest of the cocktail of drugs you describe, just Imuran. They did blood tests every month on my liver function and after the second month, and the second blood test, very abnormal chemistries came back and I was immediately taken off the drug. I did not feel lousy at the time other than my normal UC symptoms, which never improved because I was not on Imuran for a long enough period of time to make that happen (I think it takes more than a month or two to work). It was shortly thereafter that I was recommended to have colectomy and installation of J Pouch.

I have a friend taking 6MP to treat UC, which is in the same family of drugs as Imuran (that being immunosuppressants), and another friend taking Humira to treat Crohn's (yet another member of said family of immunosuppressants). Both of these friends have complained of fatigue to me although it has not been the "completely wiped out" type fatigue. Rather they get tired occasionally and do not want to go out for dinner and the movies etc., but I do not observe them to be "wiped out" as you say.

The friend who is taking Humira for Crohn's has become a complete germophobe since he started taking Humira. We go out to eat and he asks for like a million forks and spoons so that if we share dishes there is no double dipping. One time I accidentally used a serving spoon that had touched food on my plate and he like totally freaked out! I had not put the spoon in my mouth, it was just sort of a not thinking kind of thing where I had left the spoon on a plate that I was eating off of and then, inadvertantly and without thinking, used it as a serving spoon to ladle food onto his plate. I have to be real careful eating with him, because of his dining hygiene. He also washes his hands with hand sanitizers like every 5 minutes. He has the worrier type personality so I take these behaviors in stride.

This message has been edited. Last edited by: DJBHusky,

Have you heard of Anti Map therapy? If you google that and crohn's disease you can get some good info on it. I've been dealing with chronic/pouchitis with possibility of crohn's and my doctor is now putting me on anti map therapy.

It is a technique they use in Australia that Dr. Borody has had great success with (again, google him and you'll get lots of info). The problem is finding a doctor stateside that has even heard of the therapy or willing to do it. Basically, you take three antibiotics and they are the same one's you would take to treat TB or leprosy because there are studies to suggest that these diseases could be caused by a bug/bacteria that is similar to that which causes TB and leprosy.

My doctor had a girl come in so sick she was in a wheelchair and she only weighed 80 pounds; six weeks after antimap therapy she is 120 and feels great!

Might be worth while to check it out.
http://www.everydayhealth.com/...therapeutic-for-ibd/

http://www.crohns.org/treatment/borody.htm

http://chronicle.com/blogs/bra...never-heard-of/30509

Along with my pouch problems I got RA in '07 and now take immune suppressors and yes Eric
I am completely wiped out. I complain to the docs and they just look at me and say but is your RA pain less? Yes it is but I have zero energy, flu like symptoms.....it sucks. I don't know what I fear more, having more joints shift and fuse (like my toe) when off the big drugs or lying around like a boiled vegetable so much of the time, feeling completely drained.

You and I became members back in '01 and I have to thank you Eric because sometimes your funny stories were the only thing that kept me sane thru so many bouts of medical/personal problems.
I'm sad to hear about your pouch problems along with that terrible story of your bike ride with the big poo accident. You deserve better.

Keep us updated, please.

hugs,
sarah (I was dolcevita back in '01)