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My 21 year old brother was diagnosed with colitis 2 years ago.  He has been through steroids (Dr. thought he needed a break and they made him very cranky)and has had remecade treatments for the last year with no noticable results.  He has decided to have a protpcplectomy due to his pain and accidents.  I feel really bad for the kid, however I am concerned that he is not considering the long term issues with the surgery.  I think he is desperate and feels the surgury is the only answer.  He is in college and has had to drop out temporarly due to his inablity to sit through class and manage the stress of the disease.  Can anyone tell me if the surgery and living with the bag is a relief?  My hope is that he would work harder on trying to find a diet that will reduce his episodes and enter therapy to better manage the stress he experiences due to the disease.

 Reply posted for Momandjpoucher.

hi momandjpoucher.  thanks for your post.  my son was diagnosed with uc in 2001 when he was almost 17.  he's been on almost every drug at one point or another.  he's had a horrible last couple of years and has been on steroids almost continuously the last couple of years.  he's also taking remicade treatments right now with no noticeable benefit.  the doctors have informed him that he has a severe case and the only real answer for him is surgery so he's decided to go forward with that in july.  i'm really worried about how he'll deal mentally.  my question for you is can you tell me who did your surgery?  i've never heard of a 1 and done.  the research that i've done so far has consistently been that at least 2 procedures were required (initial and take-down).  help?  thanks!

 Reply posted for bigsister.

My husband had uc for 3-4 years before having surgery, and wished he would have had it sooner. 

He had an ostomy bag for approx 6 months and then got connected with a j pouch. 

From what I've heard many people live comfortably with an ostomy bag.  There is some regular maintenance involved, but it makes it much easier, not worrying about how close a bathroom is and if you can eat anything.  People don't know you have it unless you tell them.  As for being active, my husband played softball with his. 

After the j pouch surgery, he lives a mostly normal life.  He goes to the bathroom much less than most people with uc, I think 4-6 times a day (yes still much more than us), but not as urgently as before. He does still have flare ups every now and then, maybe 1 a year or every other year.  But it is better than being afraid to leave the house, and being on prednisone non stop.

 Reply posted for bigsister.

I had my jpouch surgery a year and half ago. It was the best decision ever! I felt so great afterwards, I really wish I would of done it sooner. It does reduce your infertiltiy, my doc said by 20-30%. We already have a beautiful DD who just turned 3 in February. We have been trying for #2 since January of 2007. I know it will happen when the time is right. My doc has many Jpouchers that are pg after the surgery.  I was lucky when they did my surgery, They did it all in one surgery. I never had to have the bag. I think it is because at the time I was somewhat healthy. Being healthy makes a huge difference.  Your brother should really research all his options. I spent many hours looking up the surgery up until the night before the surgery.  i have no regrets.  I wish him the best of luck.

 Reply posted for ganesha.

Hi Brenda,

For me, it was very hard having a bag.  I started talking suicidal.  I told people that I did not want to live if I had to have a bag forever - mentally, having a bag made me a little crazy at the time.  I remember sleeping very little because I kept having to get up and empty the bag and I tried not to eat too much because it meant I had to empty the bag more frequently.  I lost 75+ lbs. 

No, people can't see the bag if you wear looser type clothing.  It about big as a 32 ounce slurpee mug.  I did have instances, where I ran out of supplies (due to some red-tape mishaps) and had to drive clear across town (about 30 miles) to get supplies from the only other ostomy patient I knew.  There was also times when the bag became lose from the "glue" and the waste came pouring out.  I had to carry a medical supplies consisting of a water bottle, an empty cannister, wet ones, the "glue", etc.  Once someone in the bathroom at work asked me what that bottle was for when she caught me filling it with water.  I did not know how to answer her ...it was so complicated to explain.  

I have  a long scar running from my belly button down to my vagina and another scar from where the bag was.  The surgery is usually done in two steps - the ostomy and the take-down (where you are outfitted with a j-pouch).  There was some complications for me so it took 4 surgeries.

I would recommend not waiting until an emergency surgery is necessary -like I did.  You will recover better and a lot faster if you have the surgery while you in relatively good health.

I have not heard that surgery reduces fertility by 50% (my doctor told me having kids would be no problem) but this may explain why I went into early menopause (10-12 years early).

I've try to be honest about my experience.   I wish you better health for the future. Hope this helps you. 

 Reply posted for jpoucher.

I was diagnosed with colitis 7 years ago (i'm 33) though I think i have had it longer and it was just mis-diagnosed because it wasn't as bad at that time. Anyway, I've been on all the drugs, colazal 9 capsules a day, remicade, steroids, etc ... and i'm not having much luck. My doctor said he might try me on Humera but expects I'll need the surgery. I have several concerns.

What is it like to have the bag? Can people see it? How big is it?
Are there scars from the surgery? Can it all be done in 1 surgery or do they still do it in 3 steps most often?

And - how much does it hurt? What's it like? How long does recovery take?

I try to be as active as i can ... i work and am a yoga instructor on the side and i teach - i manage my UC somehow ... i have had many accidents - too many to count ... sometimes i just want the surgery to get it all over with - i've had it ...

a year ago i was so sick -- but Remicade helped for a while ... though it has stopped helping much now. (i've only been on it for 6 months).

My other concern is my doctor said surgery reduces your fertility by at least 50 percent and my husband really wants kids ... i think i do to. so do i wait and suffer? Or take my chances adn have the surgery? I want to be better so badly. I want my life back. It feels so unfair ... other people don't have to worry if they'll get through an hour without having an accident!

~Brenda brenda.haak@gmail.com

 Reply posted for bigsister.

I was 21 and in college when I had my colon removed 4 years ago.  While my surgery was an emergency, I don't regret having it one bit.  While I had an ostomy for 6 months (and true, no college kid wants to have an ostomy), but I learned to live with it for the short amount of time I had it.  In the long run, it was definitely worth the six months of having a bag.  Now I live a normal life for a 25 year old.  I have had to adapt somewhat to having a j-pouch and plan ahead sometimes.  For instance, if I know I'm going to a place where I don't have easy access to a restroom, I might watch what I eat before just because certain things go through me quicker than other things.  Again, I believe the surgery is a good answer if it comes down to it. 

 Reply posted for bigsister.

I regret not having my surgery earlier.  I have had an ostomy or ten years now and have my life back.  You need to support your brother in whatever choice he makes.  It is not an easy procedure to get through, and it is a huge life and body altering surgery, but it helps to have lots of support and life returns to normal in time.  I was 21 when I had my surgery too - had to take a leave from college - I know those challenges all too well.  If I can be of any help please let me know.

 Reply posted for bigsister.

hi i had four surgeries 5 years ago to remove my colon.  i had to wear a bag twice before i was re-connected w/a j-pouch.  the first time i wore a bag for 1 year and it was the worst for me- i had several complications.  i couldnt walk for a while and had to practice walking again with a walker.  i had to wear a bag again the 2nd time for six months.  it was not easy having a bag.  it does alleviate the bleeding and the pain and the accidents but then you have to deal with other stuffs.  im middle aged and was in poor health when i had to have the first surgery.  your brother is young ...maybe if he really works on improving his diet, exercise, & maintains a relatively low stress life, he could avoid having to have surgery.   the important thing is that he not overdo it...make time for his body to rest and recharge.   if he is at the point though where surgery is absolutely necessary then he shouldnt put it off.. the longer he waits, the worst his symptoms could get and then his recovery could be hard if he is at the acute stage.