My name is Mitchell and I'm 25 years old living with UC, diagnosed in 2008. For the past 8 months I have had the worst flare up. I have been on several medications and nothing seems to be working. Currently I am taking Remicade every 6 weeks, antibiotics and steroids and have not seen any results. I have an appt with a surgian the first week of Jan to discuss options. I'm scared to death of surgery but know I can't keep living this way. I read other postings and hear mostly negative outcomes of surgery. Does anybody have any positive outcomes they could share with me to ease my mind? Thanks
UC Possible surgery???
- Thread starter Mvandy
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Jessi
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Hi Mitchell. Welcome to the forum.
I'm really sorry to hear that the drugs haven't been working for you. It's a shame you've had to go through so much.
Try not to be scared. We happen to have quite a few people here on this forum who have had surgery for their Crohn's or colitis. I've heard a lot of positives from them too. Check out our Surgery Forum here. http://www.crohnsforum.com/forumdisplay.php?f=71 A lot of people have been really happy about living with a stoma. Here's the Stoma Forum. http://www.crohnsforum.com/forumdisplay.php?f=46
I really hope you can find some comfort in these forums. Let us know how things go with your surgery consultation. :hug:
I'm really sorry to hear that the drugs haven't been working for you. It's a shame you've had to go through so much.
Try not to be scared. We happen to have quite a few people here on this forum who have had surgery for their Crohn's or colitis. I've heard a lot of positives from them too. Check out our Surgery Forum here. http://www.crohnsforum.com/forumdisplay.php?f=71 A lot of people have been really happy about living with a stoma. Here's the Stoma Forum. http://www.crohnsforum.com/forumdisplay.php?f=46
I really hope you can find some comfort in these forums. Let us know how things go with your surgery consultation. :hug:
I was diagnosed about 3 years ago, and having a bag was one of my biggest fears. When I was little my uncle had his bladder removed because of cancer, I remember him being sickly and what not, so the bag was a horrifying thought.
In the two years following my first flare I had 3 blood transfusions, pancreatitis from the Imuran, serum sickness and anaphylaxsis from remicade, blood clots in both legs, severe anaemia and logged over two months of hospital time.
So I opted to have the surgery mainly because I wanted an actual life. The only difference between my life now, and my life before the UC is that I no longer need to remove my pants. If I need to go #2, I kneel in front of the toilet instead of sitting on it. It's now second nature.
On Saturday I was at a party, a friend of mine drank too much scotch and she spent a couple of hours huddle over the toilet. I need to empty my bag, it was around 3 am, I discretely took a walk to secluded corner of the parking lot of the mall next door. Had I not had a bag, I would have been calling a cab to take me home. I got home at 7 am.
I'm now partially artificial, so I'm basically Robocop.
In the two years following my first flare I had 3 blood transfusions, pancreatitis from the Imuran, serum sickness and anaphylaxsis from remicade, blood clots in both legs, severe anaemia and logged over two months of hospital time.
So I opted to have the surgery mainly because I wanted an actual life. The only difference between my life now, and my life before the UC is that I no longer need to remove my pants. If I need to go #2, I kneel in front of the toilet instead of sitting on it. It's now second nature.
On Saturday I was at a party, a friend of mine drank too much scotch and she spent a couple of hours huddle over the toilet. I need to empty my bag, it was around 3 am, I discretely took a walk to secluded corner of the parking lot of the mall next door. Had I not had a bag, I would have been calling a cab to take me home. I got home at 7 am.
I'm now partially artificial, so I'm basically Robocop.
Hi Mitchell,
sorry to hear you are having a hard time.
Your story sounds a bit similar to mine. I spent nearly 9 years of trying all sorts of meds, they would work for a bit then i would relapse again, plus I got drug induced lupus from remicade. I spent a few weeks in hospital over the years too.
I had my colon taken out March this year,
Even though I had a couple of complications and spent another 5weeks in hospital, I am so glad I had the surgery. I am looking forward to getting my ileostomy reversed sometime in 2012.
My main concern with surgery was that i might freak out about having a stoma and not know how to cope with the mental/emotional side of it all. I can honestly say last week was the first/only time since the surgery that I had a 'I hate this' moment.
But I would take the life I have now over this time last year everytime.
I am back working and enjoying life so much more. I'm finally remembering what it is like to feel healthy.
keep us updated on how things go with the surgeon.
M
sorry to hear you are having a hard time.
Your story sounds a bit similar to mine. I spent nearly 9 years of trying all sorts of meds, they would work for a bit then i would relapse again, plus I got drug induced lupus from remicade. I spent a few weeks in hospital over the years too.
I had my colon taken out March this year,
Even though I had a couple of complications and spent another 5weeks in hospital, I am so glad I had the surgery. I am looking forward to getting my ileostomy reversed sometime in 2012.
My main concern with surgery was that i might freak out about having a stoma and not know how to cope with the mental/emotional side of it all. I can honestly say last week was the first/only time since the surgery that I had a 'I hate this' moment.
But I would take the life I have now over this time last year everytime.
I am back working and enjoying life so much more. I'm finally remembering what it is like to feel healthy.
keep us updated on how things go with the surgeon.
M
Hi Mitchell,
I'm in the same boat as you; I'm thinking I'll end up down the surgery path next year as I can't keep taking medication. I'm all of a sudden reacting to everything and to be honest I'm over the lifestyle. I can't stand flaring, I am not coping with the cramping and I just want this gone. I just have to get over that hurdle of having the "possible bag"
My surgeon is saying that if I'm healthy, in remission etc then my chances of everything being internal will stay that way and I won't need the external bag so I'm working on that.
I too am struggling to hear success stories. My Specialist has said he'll put me in touch with previous patients who are willing to speak with me re the whole process and I'm looking forward to doing so.
I also spoke with a sister in law (well ex sister in law now) and the guy she has just married had his large bowel removed years ago, not colitis related not sure why. Everything went fine. I've met him a few times and he is healthy, drinks wine and lives life. She said the only thing he needs to do is drink more water and keep up with the mulit-vitamins. Gosh i pray this will be our case
I'd have surgery in a second if I knew this was the outcome.
I can understand you having the "hate this moment" last week. I lost it the other night with my husband. He's been the best but I hadn't truley shown my fear of what may happen next year with surgery. We both kept being strong in front of each other but really both were so worried about what's to come. It's good in a way that has happened as we are now speaking way more openly (and even joking about the bag), which i kind of need as I want this to be as normal as possible if that makes sense.
Hope it all works for you.
I'm in the same boat as you; I'm thinking I'll end up down the surgery path next year as I can't keep taking medication. I'm all of a sudden reacting to everything and to be honest I'm over the lifestyle. I can't stand flaring, I am not coping with the cramping and I just want this gone. I just have to get over that hurdle of having the "possible bag"
My surgeon is saying that if I'm healthy, in remission etc then my chances of everything being internal will stay that way and I won't need the external bag so I'm working on that.
I too am struggling to hear success stories. My Specialist has said he'll put me in touch with previous patients who are willing to speak with me re the whole process and I'm looking forward to doing so.
I also spoke with a sister in law (well ex sister in law now) and the guy she has just married had his large bowel removed years ago, not colitis related not sure why. Everything went fine. I've met him a few times and he is healthy, drinks wine and lives life. She said the only thing he needs to do is drink more water and keep up with the mulit-vitamins. Gosh i pray this will be our case
I'd have surgery in a second if I knew this was the outcome. I can understand you having the "hate this moment" last week. I lost it the other night with my husband. He's been the best but I hadn't truley shown my fear of what may happen next year with surgery. We both kept being strong in front of each other but really both were so worried about what's to come. It's good in a way that has happened as we are now speaking way more openly (and even joking about the bag), which i kind of need as I want this to be as normal as possible if that makes sense.
Hope it all works for you.
