Need surgery! Ileostomy or j pouch? Help

I've been in the hospital for about a month now and no medications seems to be working. High doses of IV steroids, 80 mg prednisone, 2 doses of remicade since 4/22/15, and a bunch of other medication like protics, and dyflucan (for thrush) because I'm on such high dosage of prednisone. I've been on the steroids for over a month and a half now. Gotten 3 doctors opinions and they all say I need surgery. I've exhausted every option so much that I have lost 45 lbs in 1 month. I'm 5'10 and weighed 165, I'm at 120 now. I'm so malnourished I have a picc line feeding me nutrition and doc say I need to stay on that for at least a week before surgery. My surgeons plan is to do the normal 2 stage process. 1st surgery is removing the colon, creating the stoma, and stretching my small intestine into a j pouch. Then 2 months later he will check for leaks and see how this are looking, if it's fine he will close my my whole in my wall and connect the j pouch to my rectum. This is my understanding. I could be wrong? He also says it takes a total 6 months for everything to recover and I should be back to normal eating a drinking whatever I want. I don't know if I believe that so much by reading other peoples experiences.

My main concerns are which has a better quality of life? J pouch or a ileostomy? By that I mean, will I be able to eat and drink what ever I want? THAT IS MY MAIN CONCERN, I want to be able to eat and drink freely, I've been restricting myself so much, I'm sick of it. So which procedure works better for that? Or at least one that's less maintenance.

Next question is does it really only take about two months to recover after the j pouch surgery? I've heard people still going to the the bathroom 15-20 a day for months and months. Or is my surgeon just being to optimistic?

My last question is how about laparoscopic removal? Don't know too much about it or the success rate. I'd like to get it all done on one surgery of that's possible. Not sure even if my surgeon is capable of that.

Overall I just want to know what everyone thinks. And what the best option really is. PLEASE HELP! If you have any other questions please ask!

This is a really individual thing. Some will prefer an ileostomy over a j pouch and visa versa. I'm probably a bad person to ask about an ileostomy because I had a rough time with mine physically and mentally. But I love my j pouch. I've had a very successful outcome. My surgery was five years ago this June. I had a two step laparoscopic procedure. The first month after takedown was a bit nutty but it settled after that. I would recommend laparoscopic to anyone who is a candidate. Much easier to heal from. I eat and drink whatever I like, no pain, no urgency and use the bathroom an average of 4x a day. I used to get up once at night to go but now that it's been a while I don't get up at night anymore.

If you go with the j pouch a highly skilled surgeon that has done many, many j pouches is a must. You should interview a few. Good luck with your decision!

PS- There are surgeons who do a one step procedure but it's usually for FAP or cancer patients. (non IBD patients in other words) For someone who had been on medications (especially prednisone) it's best to have it done in two or three steps.

You will have a better quality of life with either type of surgery that choose to have.

With you being so sick and on such high doses of Predison the surgeries are done in a few stages; I was so sick at the time of my first surgery that I needed a 3 step surgery. With the 3-step it gives you time to decide after the 1st step if you want a j-pouch or not; then the 2nd step is the j-pouch creation....If you only go with the 2-step surgery then the j-pouch is created when your colon is removed.

Have they discussed Cyclosporine with you? It brought me out of a few nasty flares/hospitalizations similar to yours.

As ks1905 stated, if it's possible to convince your surgeon to perform a 3 step procedure instead of the 2 step because you will be able to live with an end ileostomy for aslong as you want and if you manage life just fine you can opt away from getting the jpouch. As well you seem to be quite sick going into the surgery as I was, and with the 3 step procedure your system has time to heal up as you can wait years if you want between the first and second/third surgeries and finally as far as I know 3 steps have a higher success rate as far as the jpouch goes versus 1 or 2 steps.

I did have a 3 step surgery performed and looking back at the end ileostomy I know I could live a perfectly happy life with one, a jpouch comes with its own pro's and con's and it's really something that is case by case and you will have to decide for your self.

-How does your skin handle the appliance and adhesives?
-How physically active of a life do you live?
-Will your family, husband or wife support you having a permanent ileostomy?
-Are you willing to risk pain and possible complications in order to 'poop' normally?
-Do you want to be med free? A lot of jpouchers still have to take immodium and sometimes antibiotics regularly, where as ileostomates are usually med free.
-Finally, if theres a zombie apocalypse will you have access to iloestomy supplies?

These are some questions you can ask your self. Do a 3 step procedure>wait a 6 months to a year to decide on your future as you heal up and in the end you can live a perfectly happy life with either options!

Post Edited (Virdent) : 5/15/2015 3:44:44 PM (GMT-6)

Do your research, it's your choice. The more or less defacto is the j-pouch, but both options are available.

That is a really personal decision, isn't it? I don't feel qualified to advise, as I don't have an ileostomy or j-pouch. I would be tempted to lean toward j-pouch for myself, but I hear it depends on your outcome. Like others said- read up and interview folks, ask lots of questions of your doctors. I hope you find peace in your decision and are able to enjoy food again!

It really is a personal choice, but, for what it's worth -I think I'd choose a permanent ostomy if I get to that point. My reasons are likely very individual. Mentally I'd be better equipped to handle my appliance having a blowup and me covered in poop rather than my butt hole failing me (yet again) and be covered in poop. I know it's splitting hairs, either way your covered I pooop, but to me, it makes a difference. I also worry too much about pouchitis, irritable pouch syndrome, regular illnesses which cause diarrhea etcetera. I feel I'd still always be worried about where that bathroom is (even though logically I understand the urgency isn't there with a jpouch, my irrational, anxious, traumatized mind would still be freaking out). Not that I think a stoma is glamorous or anything, but I also don't think it'd gross me out or make me sad, however, to some, looking down at a stoma is a huge deal. I also would like to just have one surgery and be done. I don't want to get used to the new normal of the ostomy, finally adjust them have to have another surgery and recover and adjust all over again. Perm ostomy is one surgery, heal, move on.

Just my two cents though.

blksteeda said...
I'm facing J-Pouch surgery as well. My sister had it 22 years ago and hasn't had one issue. No doctors, no meds, nothing. She eats whatever she wants with no issues. She goes to the bathroom around 5 times a day but can control everything.

. My sister has had her j pouch for 22 years now as well! She may actually be on her 23rd year....i lose track. Anyway, she's not had one problem either all this time. My uncle has a j pouch too. So it was easy for me to make the decision to get one. So far five years now its been great. I can only hope i have the longevity that they have had.