Have you had your j pouch removed? If so, what were the reasons you decided to have the surgery? How long after the ostomy surgery did you wait to remove the j pouch?
My j pouch is covered in crohns and they want to look at taking it out around October. Which will be six months since ostomy surgery.
Im having a lot of mucus and some pain in the jouch area like pressure.
How difficult was the surgery? They told me it is the hardest of all. 
thanks for your replies!
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Hi Starry, I had my jpouch and permanent ileo done during the same surgery. In the hands of a skilled surgeon and with no complicating issues, it was no worse than the surgery when my jpouch was created. Maybe this was because I was desperate to get my quality of life back (attitude is key here and mine wasn't so positive for my first three surgeries.)
Lambpie - thank you for the response. That makes me feel more confident in the surgery. I could not have it done in one surgery as the surgeon at Cleveland clinic said it was way too risky. When I got there I couldn't even take two steps on my own due to the pain.
I I am very glad your surgery and recovery went so well. Interested to hear answer to Fosty's question regarding healing time.
It seems like each of us has a slightly different situation from the others. If your surgeon wants a two step surgery, I'm sure he or she has a very good reason for it - UC vs Crohn's, fistulas, inflammation, etc.....Starry, sounds like your level and cause of pain may have been why your two step. My surgeon was pretty calm about the whole process (he's also done many of these, but kept reiterating that my jpouch was the only one of HIS that he was removing...I figured let him be a little cocky if it's going to do a great job 
...so I just took his lead. I bought several microbead pillows to sit on, as I heard the butt can be sore, and never needed them. I just sort of leaned to the side for a couple of weeks. Fatigue, getting used to my new stoma and appliance. Fosty, really no different from #1 surgery of total colectomy or #2 jpouch creation. More fatigue for longer, though, so I assumed my body was doing major healing. I will say that I truly believe my body was happy that the jpouch was out and that I was no longer on meds that were no longer working and having side effects. My hair grew back in, I put on five pounds immediately and I no longer woke up with dread over what kind of day it was going to be or if a treatment was no longer going to work. Do I LOVE my bag? No, but I know how to work with it. Sorry for the long post.......
P.S. Starry, I, too, asked why this surgery was considered so difficult. This, and the fact that it was permanent, made me so scared that I gave it a lot of thought for a year before making my decision. Getting that baby out can be complicated due to adhesions, etc. Make sure you have confidence in your surgeon everyone!
Lambiepie,
How long was your total recovery? I might be looking at this too , recently diverted and not recovering well, 1 month out and still very tired. I too was too sick for removal at that point.
Y'know, it's weird but the mind has a way of blocking out recovery time. What I remember was watching tv and reading a lot for at least four weeks. I wasn't super hungry for at least six weeks (which was different from surgeries one and two after which I was ravenous.) I was more tired than anything else since the Percocet helped with the pain, but I took it for four weeks. I started teaching chair exercise classes after six weeks and my standing ones after ten weeks, but I definitely didn't feel up to par for at least four months. Then all of a sudden I felt like myself.
Wait, Allykat, your surgeon agreed to remove your jpouch? I've been away from the forum for awhile but I remember your aggravation over his refusal even though your jpouch was giving you so much trouble.
I had emergency surgery a month ago. I spent 2 weeks in the hospital. I was very very sick with pouchitis. I was only diverted, still have pouch in, reevaluated in a few months.
Im wondering if leaving the sick pouch in is causing a poor recovery. Everyone said 4 weeks it gets better but I'm still not doing well and still don't feel up to driving and going out by myself. I feel lightheaded as well as tired. I'm eating but still not gaining much needed weight. Lost 10 lbs in a month. Getting nervous I will not make it to the other side of all this.
Im not sure I'll survive another major surgery with how I am doing now unless things rapidly improve.
I'm so sorry about your emergency surgery. Maybe your recovery is longer because you were sick going into surgery. Mine was long the first time because I was very sick and very thin going into it. There are stories on here of people doing ok leaving their pouches in and stories of people doing much better with theirs out. I can understand your aversion to another surgery feeling like you do now. Give yourself some more time to heal. Hopefully then you'll be allowed to see pouch removal differently. Right now everything must feel overwhelming.
thank you all for the responses. I'm most nervous about healing in the bottom area I think. Sitting and moving would seem to be uncomfortable. But I don't think I have a choice. I think the j pouch has to come out due to all the problems coming up lately with it.
I do not have a date yet. probably find out in September. Hope to book mine for January to accommodate my work schedule.
good luck to you!
That is great to hear. I'm most worried about the bottom I think. I have never been scared of a surgery (crazy, but they have all been emergencies I guess) but this one is freaking me out! I'm sure we will both do fine though.
Starry, I believe you will do well. You have recovered nicely from this surgery and you will be strong going in. Mentally you have it together.
Frosty, I agree, the bottom will heal first but the rest....I still can't wrap my mind around losing my pouch, I too am just diverted at the moment like Starry And having a terrible time accepting what it is. It's crazy cause I should be grateful. I think I have too much time on my hands to think.
Just like ally meds would work short term and then I would wake up deathly sick. Tried humira, 6mp, IMuran, prednisone, methotrexate for two years and got sicker and sicker on them. Used flagyll and cipro all the time as well. Together. Nothing worked.
Im spending my days trying to figure out if I should have the j pouch removed Or not. I have a few issues but nothing as bad as it was so now I keep thinking "I can make it like this". but in reality I think it will be so much better with it out. I Think the horror stories are the minority. We will all make it through.
Fosty - if I do this it will be early jan at Cleveland clinic so we can keep each other updated.
Lori726 - do you think having an ostomy wold help the butt pain? I had crohns infest my pouch and anal area and when it was diverted to the ostomy things immediately felt better. It would give your anal area time to heal possibly? And give you much needed relief. To me the ostomy is so much better once you learn it than the pain we experience.
Lori you said you are waiting to have the pouch removed. do you have a date set? I think you will find you feel so much better with an ostomy. it's becoming easier everyday for me And it does take time to adjust and heal. After that you will feel so much better. I will keep you in my thoughts as you go through this as well. You will make it through!
Lori, I would talk to your old doctor especially since you have been with him so long. Maybe they can bill thru another doctor in the office or work out something else. My doctors have worked out things with me
I don't know how I would feel about a pelvic Surgeon. I guess you could always head to NY or Cleaveland. Maybe John Hopkins would be closer? I know when you feel awful having to travel to interview a surgeon Is such a pain.
I think a colorectal sirgeon should be seen. I travelled 12 hours to Cleveland clinic for surgery for the ostomy and will do the same for the j pouch removal. ininderstand the financial situation. I would find a good colorectal surgeon in your network Or as allykat stated talk to your dr about billing issues.
