Realistically, what can I expect out of life; post surgery.

[s3king93]

Hey everyone,

I'm seriously considering getting surgery at this point. Remicade has yet to work for me, although I'm still due to get my third treatment next week so fingers crossed that kicks things into gear. EDIT: I have ulcerative colitis. Just the lower, left side. Diagnosed 18 months ago.

Even if the medication works I'm seriously considering getting surgery. I don't like being on all these medications and I can feel that its taking its tole on my body already, I feel a lot weaker mentally and physically then I did before I started all these meds.

The only thing that scares me about the surgery is pouchitis. The idea that I will go through all of that, take away a very important organ of my body and then end up with the same symptoms as I already have is incredibly frightening.


If I was to go through with the surgery, what I can realistically expect from life?


- How many times per day will I be going to the bathroom? From what I've read some people are saying they only go twice a day, some saying they are confined to the house going 13-15 times per day still.

- Will I have diarrhea ? Some people are saying they still have pure water stools with and constantly going, others say they have fully hardened stools and just go 4 times per day. I'm seeing no real trends at all with the research I've done.

- Long term, what can I expect? According to wikipedia 50% of all people get pouchitis after 10 years. 33% after 5 and 15% after a single year. If I get this surgery do I need to accept before hand that I will likely at some point have my colitis symptoms back again, even tho I don't have a bowel?

- Weight wise, will I be able to do sport and gain muscle again after all the surgeries are done? I'd like to get back up to a strong 160-170 pounds again if possible, I'm 135 now at 5'10" and I don't feel good at all. Will the surgery allow me to gain weight again or will the increased bowel motions make that impossible?


- Some people are saying "surgery gave me my life back" and some are saying "I can't live a normal life at all". What I'm worried about is that its all relative and the people who are saying it gave them their life back were a lot worse than I am now prior to getting their surgery. Right now I'm going to the bathroom 5-6 times per day with diarrhea, blood, mucus and cramping and a lot of urgency. This is literally hell for me (I've had it a lot worse 20 times per day in hospital for weeks, so I know it could be worse).

Can I expect life to get much better than it is now with surgery?



I greatly appreciate any and all help.

Regards

Sean

 

[Jennifer]

s3king93, I'd like to be clear on your diagnosis. Above you mentioned colitis but many doctors often refer to Crohn's in the colon as colitis (simply meaning inflammation in the colon) or sometimes Crohn's colitis. Do you have Ulcerative Colitis or is it Crohn's that's affecting your colon?

Edit: Also how much is being affected? The entire thing or a smaller area?

 

[Honey]

Hi there and welcome,
Sorry to hear you are having a bad time. We are all individuals and respond differently,sometimes, to meds. Remicade infusions are working for me just now.All else failed and I too was worried about surgery. It depends how much intestine is affected, usually a resection is done, no pouch,function normally. Do you have Crohns? Ask your Consultant what your tests revealed and put your mind at rest!! It is a big worry I know, but half the battle is being fully informed about your condition. Surgery is only the last option.Have you been on other meds before infusions? Wishing you well again soon. Let me know how you are. Best wishes.

 

[s3king93]

s3king93, I'd like to be clear on your diagnosis. Above you mentioned colitis but many doctors often refer to Crohn's in the colon as colitis (simply meaning inflammation in the colon) or sometimes Crohn's colitis. Do you have Ulcerative Colitis or is it Crohn's that's affecting your colon?

Edit: Also how much is being affected? The entire thing or a smaller area?

Hi sorry about that. I have ulcerative colitis. Left sigmoud as far as I know.

 

[s3king93]

Hi there and welcome,
Sorry to hear you are having a bad time. We are all individuals and respond differently,sometimes, to meds. Remicade infusions are working for me just now.All else failed and I too was worried about surgery. It depends how much intestine is affected, usually a resection is done, no pouch,function normally. Do you have Crohns? Ask your Consultant what your tests revealed and put your mind at rest!! It is a big worry I know, but half the battle is being fully informed about your condition. Surgery is only the last option.Have you been on other meds before infusions? Wishing you well again soon. Let me know how you are. Best wishes.

Hi sorry I left out some important info. It's edited into the top now. I was diagnosed 18 months ago. I've been on asacolon before the remicade. I'm on imuran and remicade at the moment, as well as the asacolon and steroids tapering.

I've been in a constant flare up now for about 7-8 months so It's getting to the point where I'm in need of some kind of remission.

 

[Honey]

Hi there,
I spent a year in constant pain and Dia several times a day, until Remicade infusions was found to work for me. I understand how hard this is , with so many set backs in treatment not working. I am also on Steroids, tapering off, due to another new problem viz. pain in my limbs. It takes time to get the right meds that work for you. I was told that surgery could put me in remission for several years, pain free, or not!! I would then have to go back on Remicade infusions. What I am saying is it is not an exact science, we all respond differently. I do hope you start to get some relief soon and the Infusions kick in and help. Talk to your Doctor about your fears : it will help! I hope I have been a little help to you, giving you a little of my experience. You are in my thoughts. Get well soon.

 

[s3king93]

So I spoke with my doctors today. We are going to wait until next week to see if my 3rd infusion works before jumping into surgery, however, we both agreed that it is the next step. Unfortunately I'm getting worse daily now so things aren't looking good.

The surgeon is due to contact me some time in the next two weeks and I'm due to go to see the doctors again in 3 weeks time. I'll keep you all updated.

If anybody has any more information about surgery I would greatly appreciate it.

 

[2thFairy]

So really, this is a J-pouch question. Over in the Ulcerative Colitis subsection there are a few threads about J-pouch and such.

I've had total colectomy for left-sided UC that went on for 2 years and no meds would fix. I've got the J-pouch formed, but have opted to stick with the ileostomy for now. LIfe is WONDERFUL!!!

You might also want to visit http://j-pouch.org which is a site dedicated to J-pouchers and issues good and bad. It is set up very similar to this forum.

 

[2thFairy]

Also, I think maybe you should try out the Remicade even beyond your third infusion.

 

[s3king93]

Also, I think maybe you should try out the Remicade even beyond your third infusion.

Honestly I cant go through another 2 months of waiting around. If I don't see some major benefits in the next three weeks I'm moving on to something else. I know surgery is going to be hell for awhile but I need some kind of release.

 

[s3king93]

So really, this is a J-pouch question. Over in the Ulcerative Colitis subsection there are a few threads about J-pouch and such.

I've had total colectomy for left-sided UC that went on for 2 years and no meds would fix. I've got the J-pouch formed, but have opted to stick with the ileostomy for now. LIfe is WONDERFUL!!!

You might also want to visit http://j-pouch.org which is a site dedicated to J-pouchers and issues good and bad. It is set up very similar to this forum.

How come you've decided to stick with the bag?

 

[2thFairy]

I hear ya. I've been where you are at. Have you considered fecal transplants? It was offered to me as a last effort before surgery, but I wasn't brave enough for that and just went with surgery. I have absolutely no regrets with my decision, by the way.

 

[2thFairy]

I have similar concerns as you do about unending diarrhea and pouchitis. Though they can be dealt with, I've never felt so good as I do now and don't want this success to end, so have kept the bag. I realize I am a freak, though.. hahaha!

But seriously, life without a colon for me is the best. I dealt with UC untreated for 18 years, finally treated for 2 years with no success, and then surgery. There are only a few people on this forum who have a J-pouch, which is why you might have better luck with your particular questions on the link I provided up above. As for stoma surgery questions (which would be part of your healing process with the J-pouch) there are some good folks in the Stoma Subforum who can address those questions.

 

[s3king93]

I hear ya. I've been where you are at. Have you considered fecal transplants? It was offered to me as a last effort before surgery, but I wasn't brave enough for that and just went with surgery. I have absolutely no regrets with my decision, by the way.

I have thought about fecal transplants but as far as I know I'll have to go to England to do it (I live in Ireland) and its 4000 euro to do it. I'm not sure I can afford it and from all the things I've read I've yet to see anybody with Ulcerative Colitis cured by it. If you've heard otherwise I'd leave to see it, I'd try anything.

 

[s3king93]

I have similar concerns as you do about unending diarrhea and pouchitis. Though they can be dealt with, I've never felt so good as I do now and don't want this success to end, so have kept the bag. I realize I am a freak, though.. hahaha!

But seriously, life without a colon for me is the best. I dealt with UC untreated for 18 years, finally treated for 2 years with no success, and then surgery. There are only a few people on this forum who have a J-pouch, which is why you might have better luck with your particular questions on the link I provided up above. As for stoma surgery questions (which would be part of your healing process with the J-pouch) there are some good folks in the Stoma Subforum who can address those questions.

I appreciate your answers dude. Sounds like you've had a rough time of it. I'm sure not even having to deal with the bathroom at all after 20 years of UC must be better than heaven! I'll definitely check out the link you gave me.

How long was the the whole surgical process for you? I've read some people can have all 3 over and done with in 4 months and then some people it takes a year.

 

[2thFairy]

If I had gone to completion with the reconnect, the whole thing would have been done in 2 stages and 4 months total time from start to finish. In my case, first stage was removal of colon and form the J-pouch and second stage would have been reconnect. Three months after the first stage, the surgeon said I was ready for stoma takedown and to be reconnected if I chose to. If your surgeon does it in 3 stages, that will definitely add at least another 3 months or so.

The hardest part of the whole process is the actual colectomy. That surgery is very hard on your body. Once out of the hospital (for me, the hospital stay was 12 days, others as little as 5), recovery is slow for about three weeks and then everything just starts to fall in place.

 

[s3king93]

If I had gone to completion with the reconnect, the whole thing would have been done in 2 stages and 4 months total time from start to finish. In my case, first stage was removal of colon and form the J-pouch and second stage would have been reconnect. Three months after the first stage, the surgeon said I was ready for stoma takedown and to be reconnected if I chose to. If your surgeon does it in 3 stages, that will definitely add at least another 3 months or so.

The hardest part of the whole process is the actual colectomy. That surgery is very hard on your body. Once out of the hospital (for me, the hospital stay was 12 days, others as little as 5), recovery is slow for about three weeks and then everything just starts to fall in place.

Sounds good (relatively). How have you found your weight to be since you've had the bag. Have you been able to get back up to your natural weight or are you still stuck being skinny? Since I've been diagnosed I haven't been able to get past 140 pounds when my natural weight is about 155.

 

[2thFairy]

I'm about 5 pounds less my normal weight. Many people gain back all of their presurgery weight or more just from finally being able to eat once again! Initally, everything runs straight through you with the stoma, but your body adjusts and eventually slows down a bit. Once it slows down, there is more time for the calories to stay in your system and the weight comes back.

With having no colon, you can lose and gain weight pretty quickly, mostly water. I go up and down 2 to 3 pounds every day. But having the ability to eat without pain and without being glued to the toilet opens up a new world of calorie-filled food and generally the weight comes back pretty quickly.

 

[Honey]

Hi there,
I understand ,but see if there is still a chance Remicade will work for you. I am so sorry you are having a very difficult time : you will be feeling drained!! I hope all works out for you ,and you start to feel stronger soon. Best wishes. Let me know how you are.

 

[2thFairy]

If I get this surgery do I need to accept before hand that I will likely at some point have my colitis symptoms back again, even tho I don't have a bowel?


- Some people are saying "surgery gave me my life back" and some are saying "I can't live a normal life at all". What I'm worried about is that its all relative and the people who are saying it gave them their life back were a lot worse than I am now prior to getting their surgery.

If you truly have UC, you won't get your colitis symptoms back again, as removal of the colon is considered a cure for UC. If you DO have similar symptoms after that, then in fact you had Crohn's colitis all along and that's a whole 'nother matter. At least that is what we are all being told up to this point. I've been without a colon for 18 months and symptom-free for all of those 18 months, but only time will convince me that it is a cure.

You say you feel as though you have no alternative at this point. That's how I felt too. With a J-pouch, if things don't go well with that, you can always go back to life with a stoma. A miserable J-pouch is not the end of the line. At least with UC, we have the option of a J-pouch. Crohnies don't get that option...if the colon is out, ileostomy is permanent straight out the gate with Crohns.

 

[s3king93]

If you truly have UC, you won't get your colitis symptoms back again, as removal of the colon is considered a cure for UC. If you DO have similar symptoms after that, then in fact you had Crohn's colitis all along and that's a whole 'nother matter. At least that is what we are all being told up to this point. I've been without a colon for 18 months and symptom-free for all of those 18 months, but only time will convince me that it is a cure.

You say you feel as though you have no alternative at this point. That's how I felt too. With a J-pouch, if things don't go well with that, you can always go back to life with a stoma. A miserable J-pouch is not the end of the line. At least with UC, we have the option of a J-pouch. Crohnies don't get that option...if the colon is out, ileostomy is permanent straight out the gate with Crohns.

But what about pouchitis? Isn't that basically just like getting UC again but with the pouch? I've heard they can't help it and a lot of people get it chronically. That's my only real fear to be honest.

I've read a few stories of people still going to the bathroom 10 + times per day with diarrhea after the surgery and it just sounds like hell, rock bottom.

 

[2thFairy]

Hmmm... I see what you mean. I don't know anymore than what books tell me, but I suspect its not as painful as an unaltered inflamed rectum. I really don't know... again, one of my fears.

I was only looking at your question from the standpoint of abdominal pain, etc., that comes with UC.

 

[s3king93]

Hmmm... I see what you mean. I don't know anymore than what books tell me, but I suspect its not as painful as an unaltered inflamed rectum. I really don't know... again, one of my fears.

I was only looking at your question from the standpoint of abdominal pain, etc., that comes with UC.

Yeah I suppose it can't be AS bad as UC. Inflammation after all hurts.


Anyway my friend, I'm off to bed. Thanks for the help. I'll keep you posted!