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Scared and confused about my pancolitis

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Ulcerative Colitis
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Posted 8/23/2013 2:09 AM (GMT 0)
Hello everyone. Heres my story of UC.
Diagnosed with Pancolitis to begin with in Dec 2010. Tried Apriso, masacol, prednisone, azithioprine, enemas, diet, probiotics, hearbal and alternate therapies but all down the toilet in flare. Finally convinced myself to go for biologics and was tested +ve for skin test ( latent TB ). Took antibiotics for that and jumped to Humira and with 2nd dose my liver enzymes shot up and had to stop it. Re started again after a month and did not work. Switched to Remicade and saw little improvement, BM went down from 8-9 to 5-6 ( still a lot ). Doc decided to double the dose at 4th infusion to double and felt about the same, still 5 BM and was hoping that it will last for 8 weeks. But in 5th week, BM went upto 9-10. Doc wants to add methotrexate and double dose of remicade every 4 weeks for 3 months.
I am worried about latent TB and afraid of lupus. This is no life guys. I dont know what to do. Not sure about surgery cause of pouchitis.
Please advice.

Male 38,
Pancolitis.
Posted 8/23/2013 2:15 AM (GMT 0)
Is pouchitis worse than what you are going through now?
Posted 8/23/2013 2:24 AM (GMT 0)
Hi Garylouisville,
Thats what my doc told me. He said pouchitis is worst then colitis. And once the colon is out there is no looking back. I just dont know what to do.

All suggestions welcome.
Posted 8/23/2013 2:34 AM (GMT 0)
I had severe UC that was drug refractory. I had 15-30 BM's a day for months, a lot of pain, I couldn't eat, couldn't sleep, was seriously underweight, malnourished and could barely function. Pretty much came down to choosing surgery, or letting UC kill me. I chose surgery, but like you, was concerned about pouchitis. For that, and MANY other reasons, I chose to go with an end ileostomy. I am a female, a few years younger than you, and have not for one second doubted the choice I made. I do what I want, eat what I want, go where I want and feel better than I have in a VERY long time. I'd be happy to answer any questions you might have.
Posted 8/23/2013 3:06 AM (GMT 0)
UCwhat ? wonder when will I say that !!!

Thank you for sharing your experience. Lot of people here seems to be happy with surgery. Its a hard call. I am trying to prepare myself mentally for it and hoping its the right decision. Thinking about the side effects of biologics freak me to death. Have lots of responsibility to discharge. Would appreciate telephonic conversation, if anyone like to help, let me know.

R K
Posted 8/23/2013 1:35 PM (GMT 0)
Just know with a J-pouch you may still be pooping 4-6 times a day, for the rest of your life. Sure, a j-pouch gets rid of the sudden urgency we all have (no large intestine so no inflammation that causes urgency) from what I understand you can hold it for a good long while. However, if you are complaining now about 5-6 poops a day being too much then know you might be going the same with your future j-pouch. I think you are over blowing the scariness of pouchitis. If it pops up then it can be treated, and it goes away. I don;t believe anybody has it as an ongoing, persistent problem.

The end ileostomy, like UCwhat? is talking about gives you a colostomy bag and you no longer need to poop in the traditional way. If frequency of going to the bathroom is you big concern than certainly that option would eliminate that problem. Depending on the appliance you choose and the consistency of what comes out of you, I think you can go days between changing the bags.

Surgery is certainly not an easy choice, but in the end it comes down to quality of life. What do you consider to be acceptable for your quality of life, how much of what you are going through now can you stand, and what will get you to a better place? There are risks in everything we do, from waking up in the morning, to driving to work, to sticking our faces into a fan (paraphrase of a quote from a comedy movie).
Posted 8/23/2013 2:02 PM (GMT 0)
Well, ostomates can never get pouchitis, ever, for what it's worth. That said, jpouchers' (or BCIR's or kpouchers') pouchitis is infrequent and short lived (after a brief dose of abx) for all but a small minority of jpouchers (some dont ever getit at all). And poop frequency (emotying of the jpouch or external pouch as the case may be) for most non-coloned is a complete non-issue as it is just a matter if emotying the pouch (internal or external) during some of ones regular visits to pee. As for holding it in, most jpouchers say there is no urgency. I am an ostomate and by definition there is no urgency- I pretty much never empty at night and I sometimes go 6-8 hours during the day without even "needing" to empty it. Before surgery I thiught that poop frequency was some sort if big deal after surgery (it is for a month or so after surgery as the gut adjusts) but it turns out to be a complete non-issue- My empty g takes about 20 seconds tops.
Posted 8/23/2013 10:18 PM (GMT 0)
ipoop / Probiotic, thanks for your feed back. What you guys say makes a lot of sense as to what do I term as quality of life. I am aware that with J pouch I will have about 6 BM, which is OK, but then I was thinking I will be off these biologics and immuno modulators which is one advantage of getting J pouch. Today I had 5th Infusion + 1st shot of Methotrexate, fingers crossed. If this brings me into remission, then I guess I will take a risk of potential side effects and continue but if I do not get much benefit, say less then 5-6 BM then I think surgery can be an option for me. What do you guys say ?
Suggestions more then WELCOME.
Keep posting and thanks for everything.
R K
Posted 8/23/2013 11:50 PM (GMT 0)
Raj_k,

I just wanted to point out something about bm's and a j pouch. I usually empty when I have to go pee. Many times I don't even feel like I have to have a BM but I will empty while in in the bathroom anyway peeing. That's where the 6x a day comes from for me. It's hard to explain unless you experience it. There is no urgency, cramps or pain. You just sit and go....its just as fast as urinating. Quick and easy! People have this idea that with a j pouch you are chained to a toilet all the time. It's just not like that.

Anyway, good luck with your treatments. Hopefully you won't have to worry about surgery but if you ever have any questions, don't hesitate to ask. :)

PS- pouchitis is in no way worse than UC.
Posted 8/24/2013 3:06 AM (GMT 0)
Hi Raj,
So sorry to hear about what you are going through.I don't have much advice to share in terms of medicine.But have you ever considered Fecal transplant? Just give it a try before opting surgery.
Posted 8/25/2013 8:57 PM (GMT 0)
ByeByeUC,

tell me, if you are on a liquid diet for one day, do you still have to empty the pouch same amount of time ?

Bloom93,
I have never thought of fecal transplant. Dont know if that is an option for me as I do not have C Diff.
Sorry about your daughter thou. I want to start SCD ( religiously ) and see if that helps. Can someone help me with outlining the diet chart and sample meals and snack options ?

Thanks in advance.
Posted 8/25/2013 10:08 PM (GMT 0)
I never did a liquid diet (even for a day) with my j pouch but I would have to say the answer to your question is yes, you would probalby still go the same amount of times. I have days where I eat very little .... Not on purpose but just maybe having a hectic day and I still go about the same amount. Maybe one BM less. It's tough to say because I don't really count anymore.
Posted 8/25/2013 10:34 PM (GMT 0)
hey - what's with all you pouch/bag people hangin around the uc forum ? always flaunting your healthy new lives - what's up with that ???


:-)


really, I just wanted to thank all you guys and gals (well mostly gals) for continuing to support everyone who is at that place where things are not working and surgery is a real possibility - you guys are awesome with all the advice, kind words, encouragement, understanding, and shoulders you offer -

you guys rock - thank you !
Posted 8/28/2013 2:47 AM (GMT 0)
Raj,
Though fecal transplant is last line of treatment for recurring C.diff, many UC people attained remission by doing FT. Do a search in this forum and Google it to learn more.
The latest success story I read here (Sorry,I might have missed some latest postings) is by ramaNYC, done with the help of top GI in New York. See the link-
https://www.healingwell.com/community/default.aspx?f=38&m=2501639
Do a search for Dr.Thomas Borody and his treatment in Australia. Just give it a try along with anti inflammatory diet of your choice. For SCD diet guidelines and stages check into Pecanbread.com- a very resourceful site for SCD beginners.
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