UOAA Discussion Board

Hi everyone....oh man what an interesting life I've had for the past year and a half. Ulcerative Colitis came at me out of now where in November 2017. So diagnosed in November 2017 and six months later medications and biologics failed me and had part one of colon removal in November 2018 by the worlds greatest colorectal surgeon. Part two of colon removal, so long rectum, was February 2019 after I decided I wanted nothing to do with the "takedown" or "J-Pouch" procedure. Something about the chance of UC attacking my J-Pouch did not seem appealing to me. I discovered so many things in that year....a 37 year old can lose control of his bowels, UC is a great weight loss program but do not recommend it at all, I was a prisoner in my own house because I didn't trust anything, I knew every bathroom for my commute to work, predisone was great for my skin, new citrate free Humira injections were easy to use (if it only worked but neither did IV infusion Remicade), it is possible to have four colonoscopies and three flex sigmoidoscopies in one year, pharmacies rarely had my medications in stock, Inflammatory Bowel Disease specialist do exist (didn't meet them until my 24 day vacation at a University Hospital before my first surgery, great doctors!), and a colorectal surgeon will inform your family that the decision to remove my colon was the right decision because my transverse, descending, and sigmoid sections of my colon were shot, how is that possible?!

Anyways, sounds terrible right but how is life now? Freaken fantastic!!!!!! I have my life back!!!!!! I have a wonderful wife who supported me through my UC journey even after I destroyed toilets! Father of two beautiful girls that decorate my ileostomy bags, pre-use of course. They even got me a shirt for my 38th birthday that says "No Colon Still Rollin" with a stick figure and a red stoma. Shortly following my surgery I started to realize how UC took control of me but not anymore. I am no longer controlled by the proximity of the nearest bathroom and a horrible disease. Honestly, for me, seeing my ileostomy following surgery was a little disappointing. It hit me at that time, what did I do, in my life, that made my body attack my large intestine? Was there an answer? The pyschological part of me got over my ileostomy once I discovered I no longer had any pain, required no medications, no more calls to medical centers seeking help, didn't require any special diet, slowly got my life back, and ultimately realised how simple it is to manage my ileostomy. I get great use out of my appliance even though I'm extremely active. Only had one blowout in my tenure but I believe that was due to pain management following first surgery while at home and must have rolled onto my stomach and woke up to a nice surprise, that was interesting. So for those who might ask, what do i use. Coloplast Sensura Mio two piece appliance, Brava protective seal, electric trimmer (for my man hairs), Brava Belt for night time use (gives me peace of mind with my wafer but probably not required), Stealth Belts (I have an everyday use one and my workout belt), and lubricating deodorant. My wife and I will be attending the National Conference in August, looking forward to that and I've joined a local ostomy support group (they are great people and I really enjoy spending time with them).

Finally, the one thing i find extremely comical....I have dreams of farting and taking a poop on the toilet, hahaha....Is that normal? Also, knowing what i know now.....would I prefer a life of medications to keep UC in remission or a life with my ileostomy?

See you all in less than a month for those attending. Thanks for reading and I'm willing to help in anyway. I'm 38 and I don't think my ilesotomy is going anywhere soon.

banbmn3022

What a great story...See you at the conference....Jimbob

Fabulous! You learned early this will not define whom you are. Enjoy and live your life.
I, too, will be at the conference. Hope to see you there

Well.
You have a good sense of humor about it.
I do too now that it's over with.
Mine wasn't as sudden but went through pure hell to get where I am at.
But it works. Right?
Mine works well. Even though everyone dreads the thought. It ain't as bad as one thinks.
I was in the dread group. Now that I've had it over 3 years it's no big deal and it doesn't hurt to poop in a bag. In fact most times you don't even know you are.
I went through all the meds you mentioned. Thing is remicade worked for 10 years.
Only difference.
40-50 years old I was fine. With remicade.
But at 50 it stopped working and my uc came back with a vengeance. Seriously. It made up for the 10 years quickly.
I waited 8 years. Ya. I know. I tried everything in that time. Nothing worked.
Then I got a j pouch. Omgoodness. That was worse than the uc. Two years I waited to see if it would work.. Nope.
Had it taken out and had immediate relief.
I thought so many times while holding it in how much more easier it would be to just go in a bag. I was right.
I consider myself fortunate. It works and works well.
I don't have an urge to fart. My ileo does that but it's not as relieving as an actual one.
But I have phantom urges to poop. My anus is still intact. Just sewn up from the inside.
It's all good. I've posted many times how fortunate I am.
I'm ok with it. But I'm older too. I only have to live with it maybe 20 years. If I'm lucky.
I don't think I'll live to be 80. But hey. Who knows? I may.
Richard