Colon removal
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is your issue the big d and frequency?
looks to me that no crohn's meds work
so is it something else ?
look at bile salts if the answer is yes
I have had a colectomy and life is better - crohns meds work for me
good luck it is a hard decision - make sure laproscopic surgery is an option
looks to me that no crohn's meds work
so is it something else ?
look at bile salts if the answer is yes
I have had a colectomy and life is better - crohns meds work for me
good luck it is a hard decision - make sure laproscopic surgery is an option
Cog I have ulcerative colitis as tested positive from promethus labs. If I stop the prednisone I end up in the hospital within a few weeks with watery bloody stools and my whole colon just looks like 1 big open ulcer wound. I have tried just about everything. Well now amost 3 years of prednisone I now have major bone ruining they call is osteoperosis then on top of that my sugar levels are elevated to almost diabetic levels. So my gastro wants me to consider getting it pulled. But I don't think I am ready yet. What worries me is the stoma and the maint. with it. The hoping worries me also because I have been hearing that you can get pouchitis. Crazy.
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Well, the good news is that since you have UC, a colectomy will be a cure for you. I have Crohns, and since my Proctocolectomy, I am in full remission.
I also waited too long to remove my colon. I'm not sure why I wanted to hang on to that diseased thing that was ruining my life, but I know the feeling.
What finally did it for me was the diag of dysplasia. Got that sucker right out after that.
I also dreaded life with an Ostomy, but now 7 months later I can say life is much better now.
The first 3 months or so is a tough adjustment. But, once it becomes routine, dealing with an ostomy is easy - at least for me. I change the system every 4 days, and it takes maybe 15 min. I empty 6 to 7 times a day, but that is when I want to, not crazy with urgency looking for a bathroom.
I'm back to doing everything i did pre ostomy (except reading on the toilet). I'm training for a half marathon on Dec 5th for CCFA, and ran 12 miles yesterday. So nice to feel great again.
I also waited too long to remove my colon. I'm not sure why I wanted to hang on to that diseased thing that was ruining my life, but I know the feeling.
What finally did it for me was the diag of dysplasia. Got that sucker right out after that.
I also dreaded life with an Ostomy, but now 7 months later I can say life is much better now.
The first 3 months or so is a tough adjustment. But, once it becomes routine, dealing with an ostomy is easy - at least for me. I change the system every 4 days, and it takes maybe 15 min. I empty 6 to 7 times a day, but that is when I want to, not crazy with urgency looking for a bathroom.
I'm back to doing everything i did pre ostomy (except reading on the toilet). I'm training for a half marathon on Dec 5th for CCFA, and ran 12 miles yesterday. So nice to feel great again.
I've got UC, mine's getting ripped out next year sometime, I haven't met with the surgeon yet.
But from the looks of your failed medication list, it's not a matter of "If" it's "when", mine is the same way. It's much better to have it planned then to enter a massive flare up and have it done as an emergency surgery, it'll be much harder to reconnect if they need to a emergency colectomy than if it's planned.
But you lasted longer than I did, I was less that two year before I had the "your colon needs to come out" chat with my GI.
But from the looks of your failed medication list, it's not a matter of "If" it's "when", mine is the same way. It's much better to have it planned then to enter a massive flare up and have it done as an emergency surgery, it'll be much harder to reconnect if they need to a emergency colectomy than if it's planned.
But you lasted longer than I did, I was less that two year before I had the "your colon needs to come out" chat with my GI.
Thanks for all the great data. It's a lot to think about that's for sure.
Thanks for all the data you folks are as always awesome to chat with and so understanding. I never thought about the hey it's better to plan a removal rather than it being an emergency such a great point one I have over looked.
Thanks for all the data you folks are as always awesome to chat with and so understanding. I never thought about the hey it's better to plan a removal rather than it being an emergency such a great point one I have over looked.
Nyx
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I got my stoma through emergency surgery, so didn't have to make the choice to have 1/3 of my colon removed. And in some ways I think that's easier, as I didn't have to think about it and hum and haw about getting it done. I just had a colonoscopy today, and I'm in full remission 
Oscar (my stoma) has been a Godsend to me. It does take getting used to as Joe mentioned above, but overall my quality of life has increased 100 fold. I can do everything I used to do pre-Crohn's.
Good luck with whatever choice you make...
Oscar (my stoma) has been a Godsend to me. It does take getting used to as Joe mentioned above, but overall my quality of life has increased 100 fold. I can do everything I used to do pre-Crohn's. Good luck with whatever choice you make...
During my last GI, he was basically "you can put it off for as long as you want, but I'm recommending that you do it some time in the next six months. Because next time you have a major flare, surgery will most likely be the only option".
For me when I have the surgery, it'll because I choose to as opposed to needing it because of the state I'm in. Mine almost came out with the first flare up, so it's been living on borrowed time anyway.
For me when I have the surgery, it'll because I choose to as opposed to needing it because of the state I'm in. Mine almost came out with the first flare up, so it's been living on borrowed time anyway.
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mmm, ive got a j-pouch after suffering with UC from around 2003 and nothing working i was rushed in for emergency surgery and woke up with a stoma -yikes! after a few minor complications and going from 12stone all the way to a bag of bones at 7stone i had my stoma for around 8mths before having it reversed, but becos it was left, i had to have 3 ops 1) the emergency 2) the formation of the j-pouch and 3) the reconnecting and removal of stoma/bag.
Ive had the jpouch a few years now and ive had pouchitis a couple of times and antibiotics cleared it up but what consultants thought was another pouchitis patch, in actual fact turned out to be crohns, which they diagnosed a month or so ago.
I dont run to the loo, or have leaks in the night, but do get my tired days and stomach pains once or twice a week, but would suggest certainly not ruling out going for the jpouch option.
PM me if you want any further info or general guidance or help on anything jpouch related
Ive had the jpouch a few years now and ive had pouchitis a couple of times and antibiotics cleared it up but what consultants thought was another pouchitis patch, in actual fact turned out to be crohns, which they diagnosed a month or so ago.
I dont run to the loo, or have leaks in the night, but do get my tired days and stomach pains once or twice a week, but would suggest certainly not ruling out going for the jpouch option.
PM me if you want any further info or general guidance or help on anything jpouch related
ameslouise
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Better to make the decision than to have it made for you by having your colon rupture, like happened to Mr. Bedfordshire and to ME! They weren't sure if I was Crohn's or UC at the time of the rupture, but since my initial dx was UC, they gave me the pouch. I had six amazing years with it before I got the new dx of Crohn's.
I say this not to scare you, but to tell you that the pouch is awesome! And no bout of pouchitis can be nearly as bad as what you are dealing with now. Even if you end up with a permanent bag, you will be amazed at how great you feel and how you don't even care that you are shitting into a bag because you have a life back again!
From what I understand, there are about 10% of UC patients that eventually get re-dx with Crohn's. That's a pretty low percentage. And since your Prometheus test confirmed UC, I wouldn't let fear of Crohn's stop you from getting the pouch. (My prometheus tests always came back "inconclusive" but it is likely that I had CD all along).
Good luck - keep us posted with your progress.
- Amy
I say this not to scare you, but to tell you that the pouch is awesome! And no bout of pouchitis can be nearly as bad as what you are dealing with now. Even if you end up with a permanent bag, you will be amazed at how great you feel and how you don't even care that you are shitting into a bag because you have a life back again!
From what I understand, there are about 10% of UC patients that eventually get re-dx with Crohn's. That's a pretty low percentage. And since your Prometheus test confirmed UC, I wouldn't let fear of Crohn's stop you from getting the pouch. (My prometheus tests always came back "inconclusive" but it is likely that I had CD all along).
Good luck - keep us posted with your progress.
- Amy
the full colectomy surgery
I had a full colectomy with the J-pouch in 2006 due to 15 years of UC. Yes, it was an agonizing choice, but so glad I was able to plan this double surgery (normally 3 months between) and get the j-pouch by a very skilled surgeon here in Indianpolis, instead of risking having an emergency surgery with a surgeon not trained in the j-pouch procedure.
It was far and away the most difficult experience of my life, but it has paid off big.. no more extreme urgency and/or bleeding!!! I have my life back. Off from work a grand total of six months. Also, your body needs time to adjust to the new j-pouch or "mini-colon".. I was passing lots of water with many stools per day (which is normal) and had some dehydration problems.. needed i.v. fluids a few times to get re-hydrated.. no big deal. Also, I dehydrate easily whenever I vomit with the flu.. so got to watch that sometimes. Otherwise I am fully functional again and feel great. No regrets looking back and I am very thankful for the j-pouch surgical option.
I had a full colectomy with the J-pouch in 2006 due to 15 years of UC. Yes, it was an agonizing choice, but so glad I was able to plan this double surgery (normally 3 months between) and get the j-pouch by a very skilled surgeon here in Indianpolis, instead of risking having an emergency surgery with a surgeon not trained in the j-pouch procedure.
It was far and away the most difficult experience of my life, but it has paid off big.. no more extreme urgency and/or bleeding!!! I have my life back. Off from work a grand total of six months. Also, your body needs time to adjust to the new j-pouch or "mini-colon".. I was passing lots of water with many stools per day (which is normal) and had some dehydration problems.. needed i.v. fluids a few times to get re-hydrated.. no big deal. Also, I dehydrate easily whenever I vomit with the flu.. so got to watch that sometimes. Otherwise I am fully functional again and feel great. No regrets looking back and I am very thankful for the j-pouch surgical option.
surgery
There's one big issue I remember having right after my surgery. Morphine made me very nauseous.. and vomiting with a large verticle belly incision is very painful. So, they switched me over to the narcotic medication Dilaudid (hydromorphone) and that smoothed out the ride for me.
Nine days in the hospital for 1st surgery.
Home for 3 months of recovery.
Then, Nine days in the hospital 2nd surgery.
Also, the second surgery is much less invasive and therefore much easier than the first. Remember to walk as much as you can to speed the healing process and regain body strength.
-RF
There's one big issue I remember having right after my surgery. Morphine made me very nauseous.. and vomiting with a large verticle belly incision is very painful. So, they switched me over to the narcotic medication Dilaudid (hydromorphone) and that smoothed out the ride for me.
Nine days in the hospital for 1st surgery.
Home for 3 months of recovery.
Then, Nine days in the hospital 2nd surgery.
Also, the second surgery is much less invasive and therefore much easier than the first. Remember to walk as much as you can to speed the healing process and regain body strength.
-RF
So your saying to get j pouch it's 2 separate surgeries?
How long are you out for each one that being in the operating room? After the second surgery how long did you take to recover? How long would you say the whole process takes before I would be back in work?
My doctor explained that if all goes well 6-8 weeks recovery for each surgery.
However that assumption is based on a year waiting time, I assume with surgeries like that in quick succession you'd want to extend the basic recovery time for the first one.
However that assumption is based on a year waiting time, I assume with surgeries like that in quick succession you'd want to extend the basic recovery time for the first one.
Yes, to get the j-pouch it was 2 seperate surgeries:
1st surgery is colon removal, creation of the j-pouch, and creation of a small stoma.
I was in the hospital for nine days.
Then, 3 months of at home recovery and dealing with the colostomy bag.
Then, the 2nd surgery to close the stoma (on the right side just above my belt line) and to connect the small intestine to the newly created j-pouch or "mini-colon".
Spent nine days in the hospital again.
Then, after three more months of recovery I was back to work again.
Glad I did it - and even more glad that it's all behind me.
1st surgery is colon removal, creation of the j-pouch, and creation of a small stoma.
I was in the hospital for nine days.
Then, 3 months of at home recovery and dealing with the colostomy bag.
Then, the 2nd surgery to close the stoma (on the right side just above my belt line) and to connect the small intestine to the newly created j-pouch or "mini-colon".
Spent nine days in the hospital again.
Then, after three more months of recovery I was back to work again.
Glad I did it - and even more glad that it's all behind me.
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Had mine removed when I was young and had a J-Pouch, which I did well with. It is an adjustment for sure, but felt much better without it. You speak to your dr and find out in you can stop the steriods. If so they might be able to do the removal of the colon and the J-pouch at the sametime. If you have any questions let me know - best of luck
