I had a Stem cell treatment

We've had some success stories with xeljanz when nothing else worked (failed remicade, entyvio, etc.), see Suzy-q's husband's story /www.healingwell.com/community/default.aspx?f=38&m=3600816.

What scares you about surgery? We've had a number of posters here who have done it and are living excellently afterwards, without medications or worries about future flares. It's a good thing to consider seriously after failing so many treatments.

I do worry when somebody says they want to avoid surgery at all costs, we had a poster die due to putting it off for way too long (Chiron/Joseph) a few months back...

In the end, it's all about quality of life and many here have a great one post-uc. Certainly try xeljanz, and research your surgery options, just in case you ultimately need them.

Often when we fear something, it is because we do not truly understand it. It's very easy to make a monster out of an unexpected sound outside when we're in bed and it's dark outside. However, we turn an outside light on, and look outside only to find we forgot to latch a gate and it's knocking against the fence in the wind (now that's some exorcism right there; demon *poof* gone)

Same goes with surgery. With an IPAA (commonly known as a j-pouch), the end result is you can sit and poop as you do now. There's no more inflammation and therefore no more urgency. You can hold a poop for 1/2 an hour, an hour, or even hours as you did befoer you had an UC (something impossible during a sustained UC flare up). You're done with doctors, medications, and even unexpected flares are impossible. If anything is exorcised, it's that evil large intestine that has been belligerent, insufferable, making our lives miserable, and beyond saving (a true demon if there truly was one lol).

Is surgery hard, is there pain, does it take a number of months to recover? Yes, absolutely. There's short term inconvenience for long term gain. It's not risk free, there's risks as there is with any surgery. Just find out the actual odds of adverse events from a surgery, rather than assume they are large (hint they are actually quite small). I'd do your homework. Even consider a no-obligation consultation with a colorectal surgeon who does IPAA's, a simple question and answer session where you ask what concerns you and the surgeon will give you honest answers (what adverse reactions could happen and their odds?, How long will recover take?, etc.). Knowledge is power, and therefore although you might walk in a little scared but might walk away informed and empowered from better knowing your options (even if you do not ultimately need an IPAA).

Post Edited (iPoop) : 9/10/2018 2:09:57 PM (GMT-6)

Marushka1969 said...
I just returned from Panama where I had a stem cell treatment at the Stem Cell Institute. I read your post "colitis91895" and wanted to be able to respond earlier, but it's only now that I was added to the forum. I am wondering how you are doing now? I think I saw that you were part of a fecal transplant study? It seems you went in 2016 and it had beneficial effects. My UC has been mild to moderate and managed mostly with restricted diet, yoga and CBD. I had a bad flare up last year which lasted many months, but now is almost in remission. However, some symptoms lingered that seem more systemic. One of the problems I was having may have nothing to do with UC which was a mild cough and dull ache in my throat (could be sign of Crohn's?) which has dissipated somewhat just a couple of days after my treatment. I am hopeful the treatment will help with fatigue and rectal discomfort as well.

Hi Marushka I wanted to recommend you see an ear nose and throat doctor. Your cough and hoarseness sounds like possible acid reflux. This is more likely than Crohns, although the Dr. can check that as well. Also, is there a reason you prefer alternative therapies to conventional medication?