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.) 

Lambiepie- how was the recovery time ? I too am having it removed in jan with one surgery. Am now on Entocort to subside pouch issues until then. So you felt it was no different then creating the pouch?

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.  

I am waiting to have my J pouch removed now. I was diagnosed with UC 1992, had some bumps along the way, re diagnosed with Crohn's about 5 years ago when things got really bad (reduced control of bowels, fistula). I loved remicade but developed lupus like antibodies. Tried Humira and currently on Cimzia with no good results. I really enjoy giving myself shots that don't work....hahaha. Had 2 fistulas /abscesses /setons placed in June of this year and everything is still a mess. On 40 mg prednisone a day which is giving me terrible insomnia. My biggest problem I have right now is figuring out who should do my reversal. I work for a local hospital and my colon/rectal surgeon works for the competition so I would have to pay 50% of surgery/hospital stay out of pocket which is insane. I can't wait to get the ileostomy b/c I am done with using this butt!! Don't get me wrong, I am also scared b/c the thought of them having to go in there after multiple previous abdominal surgeries (c-sections, re-sections, removal of right ovary) makes me wonder how bad this surgery will be. It is all scary but hopefully worth it in the end. I have loved my j pouch for many years but it is time to say goodbye. Hang in there-it has to get better, right?!?

 

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.  

Starry do you have a surgery date yet? I am booked for end of Jan at this point.

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! 

I heard the bottom heals the quickest. It's the rest of it that takes awhile. Let's hope for a good outcome for both of us!  I heard in the long term it was the best decision so I will look forward to no more pouch issues.

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.  

I feel the same as you!! I think because of the neg comments we heard. With me haven't had any surgery since then 11 yrs ago. I'm sure we will be troopers. im on Entocort now but not helping and really don't want to move surgery closer. Did antibiotics work for you? Tried Cipro for a bit but was not helping after awhile. Wondering if should do flagyl with it.

Sorry to keep barging in on your post....I think it's the prednisone!! My colon/rectal guy likes flagyl for butt symptoms. My case is a little different b/c I have fistulas and some weird skin growth (for lack of better term) around the rectal area. All this butt anger is rendering my pouch useless but my pouch itself is not the cause of my need for an ileostomy. He put me back on flagyl to see
If it would calm down all my peri-rectal problems/inflammation. I was also on tindamax prior to flagyl which is a kinder flagyl in my opinion. You still can't drink alcohol but it doesn't have that nasty taste of flagyl. I think either of these may be worth a try. After reading all these posts, I am trying to remain positive that I am at least still able to function somewhat. Living is very difficult right now but I am trying to be thankful that it hasn't come to an emergency situation yet like so many of you. Thanks for sharing your stories and best of luck with future plans! I can't wait to not have to think about my butt 24/7!!

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.

Yes Ally just take it one day at a time. First get stronger then it's easier to process things along the way. Your pouch is fine there right now plus you were quite sick going in to this surgery. Did you do flagy and Cipro together? Waiting to see if this will work as Cipro alone did not or Entocort. Hoping to ride this out till Jan.

Yes. Flagel makes me super sick. Either the drugs stop working or I had reactions from them. Enocort just sugar coated the pouchitis, did not put it into remission. Not for long term use so I'm assuming that's why you want removal. Remicade put me into a 3 year remission but that too I got real sick on. Funny, I did well on xifaxan and then 2 months ago I woke up real sick and the rest is history. Happened so fast and furious, scary, scary.

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.  

Just started Cipro / flagyl  so I'm hoping for some relief. Just worried about constant nausea etc. Starry I think for the remainder of life for quality
purposes it's not worth fighting this pouch. I want to travel etc and it's impossible like this. For months of inconvenience during recovery totally out weighs this type of life. Spoke with someone in my city and she had her pouch over 20yrs with issues. Had it out 2 yrs ago and her life has been amazing. It was rough for a bit but totally worth it. Would be great to support each other through this as the timing is so close together.

Starry01-I am hoping the ostomy will put an end to the Crohn's torture. I have been thru many meds also- cipro (my bestie for many years), flagyl, tindamax, xifaxan, probiotics, entocort or prednisone, remicade, Humira, and now cimzia. I am a pharmacist so I am aware of all their evils. All of them have stopped working at some point. I feel remicade was my last true hope. I know there are a few more biologics I could try but I am done. This Crohn's has stolen the quality of my life with a vengeance. I have read many posts where people live with fistulas and setons for years but I can't stand them. I am tired of feeling the constant  pain /inflammation/irritation in my rectal region. And if I have to go into surgery for another abscess /fistula, I am totally going to lose it!! My biggest fear(ok one of the many), is I get the ileostomy, get my pouch/butt removed, the Crohn's just resurfaces at the ileostomy site. What happens then? My doctor is hoping that won't happen b/c all my Crohn's problems have been in the rectal region. This Crohn's is sneaky. I feel like the ileostomy is a chance I have to take to get my life back. I am currently at 109 pounds (normally 125 lbs) on prednisone which is also scary. I don't want to eat on this yucky flagyl knowing everything I eat has to pass thru the angry rectal region to come out. Thanks to the prednisone and flagyl (love/hate relationship with these drugs!!), I am able to function somewhat but I fear this could fall apart at any moment. My anxiety is at an all time high and I can't wait until I have a plan in place for the surgery. I know the ileostomy is not the easiest thing to deal with but neither is a pouch that is causing so much havoc in one's life. Thanks for letting me rant some more!!

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! 

Starry-I need to change doctors b/c my old colon/rectal surgeon is not covered by my insurance so I have nothing scheduled
yet. I was going to say screw it and go to him anyway but after 2 outpatient OR trips that only lasted 1 hour each, I owe at least $8000 with the bills I have so far. I am 41 years old and he has been my doctor since I got my colon out at 18 so I feel like I have just broken up with a long time friend. I tried to use the colon/rectal surgeons associated with my hospital 5 years ago but they don't do j pouches so their knowledge was zippo. My surgeon assured me I just need a good pelvic surgeon b/c they are deconstructing my pouch/rectum, not fixing or making a new one. Not sure how I really feel about that. I am meeting with a new colon/rectal surgeon this Friday that is covered by my plan to see what his thoughts are. My insurance told me he could refer me to a doctor at Hershey Medical Center in PA (USA), if he is not comfortable with the surgery. Not
sure what I am hoping for at this point....someone that won't kill me!! Thanks for your support! Glad to hear the ileostomy is able
to give you a new chance
at life after the healing/adjusting.

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.