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Ulcerative Colitis
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Posted 10/17/2010 6:47 AM (GMT 0)
Hi all,

I'm a 30 y/o male and I've been dealing with UC for 6 years now - probably a bit longer but that's when I decided to finally see a doctor about it and was told that's what it was. Its gotten progressively worse and I'm at the point where my GI tells me there are no more medical options available so he is recommending surgery. Yup- bad enzyme levels to 6MP caused my white blood cells to drop, anaphalactic reaction to remicade after I was doing pretty good on that for 10 months, and the prednisone is giving me osteopenia so I can't rely on the small amount of comfort that was giving me much longer without turning into a quivering, gelatinous blob. I'm currently on humira (my GI fudged the diagnosis a bit to say I have large bowel chrones) but it isn't doing squat for me so I'm consulting with a surgeon on wednesday.

I'm 6'3" and when my daughter was born in april I was down to about 165 after a bad flare, large amounts of steroids and all the fun side effects that entails got me back up over the summer, I put back on a hard won 30 lbs but started flaring a few weeks ago when I tapered off and have already dropped 10 of it like nothing. I really can't go through that again, I need to have energy to spend time with my daughter and am just tired of the lifestyle. I should have invested in charmin and immodium, I could be retiring. Plus deer season is just around the corner, and if I miss another one because I can't sit on a tree stand, I'm just going to have to figure out a way to hunt from the toilet- and the wife may have a problem with that.

I came across this forum and have read some good things so far, I was wondering what people's experiences with surgeries have been and if anyone has any advice? Thanks!
Posted 10/17/2010 8:33 AM (GMT 0)
Hello mate,i totally understand your situation.......I too have a 8month daughter and i have been struggling with my UC for about 2years now! None of the drugs i take work anymore and im just poisoning myself now for no reason.
I am having an ileostomy on 28th oct to finally and hopefully get rid of this bloody desease,for me it was not a hard decision,i have been almost housebound for the last 6 months and the only time i left home was to go to work which was a real struggle plus the feeling of having no energy at all was turning me into a miserable old git.
I thought enough was enough,i want my life back and my daughter and wife want there daddy/hubby back.
This is a very good forum which you will get loads of good advice from.
I wish you well
ROF
Posted 10/17/2010 12:21 PM (GMT 0)
I had jpouch surgery 9 years ago due to refractive disease. I have never regretted it. The past 9 years I have been able to live a very carefree life without worrying about the unpredictability of disease or where every bathroom is. You can communicate with people who have had ostomies, jpouches, or kpouches at www.j-pouch.org Mind you, like this board, many over there are seeking answers to problems. The vast majority of us are out living life.

Sue
Posted 10/17/2010 7:54 PM (GMT 0)
i had sugery 3 and half years ago because i was tired of wasting my life, only regret is i didn't do it sooner!
Posted 10/17/2010 9:59 PM (GMT 0)
I don't blame you. If I were faced with a choice of taking hard core drugs for the rest of my life with its toxic side effects or choosing surgery then I would probably choose the latter.

You need to check out the Ostomies section in order to make an informed decision and see all sides of the story: those who have had successful surgery and those whose surgery was less than ideal:

Pam222 said...
It does indeed suck to have everything indicating UC, have the surgery, and then find out you really have Crohns or something else and are not cured after all

27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again
6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement
Flagyl 500mg (3/day), Prednisone 40 mg, Culturelle, D, B12, Iron (2/day), Starting Humira soon

Post Edited (BabeintheWoods) : 10/17/2010 4:20:07 PM (GMT-6)

Posted 10/17/2010 11:53 PM (GMT 0)
Hey! Welcome to the site! I am 25 years old. I had UC for 10 years and about a 2 and half years ago i had a total colectomy. I was very ill due to the prednisome, imuran, asacol and remicade all not working anymore. Im only 5'4 but i weighed 94 pds before my first surgery! They did make me do the surgery in 3 instead of the normal 2 so take that into consideration that you might need to do that as well. The first two surgeries last typically 2 hours and you would be hospitalized about a week. The third surgery is half hour and i was only in the hospital for 3 days. I had to have an ileostomy for a year. I did get blood clots after my first surgery because i was so weak and it was hard for me to not sleep all the time and get up and move around so i had to wait to have my second surgery until after i was on my blood thinners for a year. Hopefully you wouldnt have to go through with that. After all the surgeries i couldnt work for about 2 months. The downsides to surgery for me were the money. I didnt have insurance so i currently pay $660 a month and will pay that for the next 4 years. Also, the obvious pain and suffering and having things go wrong. For me it was the blood clots...other than that i only have good things to say about having surgery! The bag was not as bad as i thought it would be at all. It wasnt hard to clean or take care of and im a small girl, petite and skinny and i still wore tighter shirts and no one could ever see it. I had the reversal(taking the bag off of you) January 09 and since then it started off going to the bathroom about 10-12 times a day and now its about 6-8. I can eat whatever i want. I do have some foods that give me more gas than others or stomach pains from some like popcorn and some foods go through you quicker, so on. But you learn that all over time. I take imodium at night time to slow things down and this helps with not waking up so much. I wake up about 2 times a night. I have quite a bit of control. I was all worried i would need to wear diapers on long car rides and stuff like that and its not that way at all. I can hold it for as long as 2 hours once! I think that pretty much covers it, i have had quite the success story which is great because when i was diagnosed 12 years ago my life has been a struggle since then. I went through high school and college with the disease, on and off steroids and no energy and sick all the time. I never thought life would be this great again and im so happy that i had the surgery. Sorry if i rambled a lot of gave you more info than you needed but before i had my surgery i came on here and was reading up and a lot of people that i saw had such negative things to say and it scared me to have surgery. My surgeon assured me this was best for me so i went through with it but i want people to hear about the success stories out there!! I am so much happier than i can ever remember! Since my surgery i graduated from college finally(had to take a ton of breaks because of flares) got married and now my husband and i are going to work on getting pregnant :). So things are definately working out for me and my j-pouch! I wish you the best, if you have any questions personally for me you can email me!! Hope this helps!

Amber
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