YEOW- that is a LONG time!

I think I remember that being one of the reasons my surgeons don't do the colectomy via a laparascope- because it takes so much longer... that is a LONG time to be under!

Yeah- looking back, I would've booked my flight for another probably 2 weeks out...

It was an adventure.

//Todd

BarbaraAnne,

All 4 of my surgeries (2 step j-pouch, pouch disconnect with end ileo, pouch removal) were open so that had nothing to do with my healing. My opinion is that 1. they finally got rid of what was making my body sick and my body was so happy to be rid of it, it healed quickly and 2. I did the mind body program and I truly believe it helped (it certainly didn't hurt)

My recovery from the 4th surgery was remarkably quick. 5 days in the hospital, got my tush stitches out (those stitches were the WORST part of the whole surgery) 5 days after that and viola I was pretty much recuperated. I was walking 1 mile around my neighborhood by myself 2 weeks after coming home from the hospital. 4 months post surgery I did a 7 mile hike at Mt Hood. 7 months post surgery I kayaked 5 hours on a river in central Florida. I really bounced back well.

Unlike ToddL, I took it easy for quite a while. I had rushed back to work after all my other surgeries, so even though I was feeling great, I stayed out of work a full 5 weeks and went back part time for 2 weeks before going back full time. Once I went back to work, I started working out with a trainer to prepare for the Mt Hood trip and I think that helped too. Got my body back to doing things that would strengthen it and get me feeling stronger.

My surgeon reserved 5 hours for my pouch removal surgery assuming I'd have lots of adhesions but she only needed 3 hours and I'm sure that helped too. As part of my mind body preparation, I had a massage a week for the month leading up to surgery, used a guided relaxation tape for 2 weeks prior to surgery, wore the headset during the surgery and in recovery and used it when I got home for about a month. I'm not a new agey kinda girl, but I figured that I would try anything taht might help. In the end, I think it did make a difference. The program is called "Prepare for Surgery Heal Faster" by Peggy Huddelston and it includes a book and audio program. I also used the program for my c-section 2 years ago and plan on using it again for this c-section in July.

Jill,

Your story is so encouraging. I agree with you that you probably healed faster because the pouch was taken out, which was the source of making you sick. Does it feel weird to have your tush sewed up? You said that was the worst part, does it feel okay now?

I think it is important to take the time to heal after surgery to avoid problems, so it sounds like you did all the right things, hence why you did so well.

I will look into "Prepare for Surgery Heal Faster". If there's even a chance of it helping, it's worth it. I'm still in the just thinking about it stages, need to get opinions from other doctors, and I'll go from there. Your story is sure encouraging though. I would love to be off all these antibiotics and feel good. If I felt bad all of the time, it would be a no brainer decision. But I feel okay for about two weeks out of the month after I finish the Zithromax course, and then I feel bad for two weeks. Plus I worry about the effects of all this antibiotic abuse. I've got a lot of helpful information from you and others on the forum, and I can't tell you how much I appreciate you taking the time to write.

Best wishes to you with your upcoming birth!

Barbara

Having a sewn tushie was weird for about a month, now it's a non issue. Greatest thing about it is no pain.

I know how hard this decision is and you may find drs resistant - I had to go to 4 surgeons to find the one who agreed with me that this was the right decision. But I knew it was for me so I kept with it. You'll know if and when you are ready to do it...in the meantime feel free to contact me with any questions and keep your eyes out for pics of the baby in July!

Thank you everyone for your input. It is a very difficult decision to undergo another operation and have an ostomy for life, but now I have more problems.

Had a nice mother's day, and then last night and all day today I have been having really bloody bowel movements, like the toilet is all full of blood. This has never happened to me since the J pouch. I have a sigmoid and EGD scheduled for Wednesday, so I guess I'll find out what it is then, but wondering what you guys thought. Could pouchitis cause the much bleeding?

Barbara

Todd,

You mentioned they removed your gall bladder. Could you explain why?

Tkanks.

Regards
Jerry

I've had the same experience on several occasions with the heavy bleeding. I understand blood is typically thought of as a symptom of cuffitis but in my case it has been attributed to pouchitis. I've found flagyl helps to stop persistent bleeding so it may be worth revisiting it if this continues.

Jerry,
Apparently, many people who go through this have their gall bladders removed- not sure why.

Mine was because I had what they called 'sludge' in there (pre-gall stones), and it was very painful.

I had the pain on and off my entire UC career, so when they did my take down, my gastro highly recommended that I ask my surgeon to rip that out at the same time...

//Todd

Hi Barbara Anne,
I'm right in the middle of a flare up of pouchitis and it's been a running battle for almost 10 years, so I too am thinking about a reversal. My doctors have not been very encouraging either. So Friday I have another appointment with another GI to get a second opinion.
I'm 59 and worried about weight loss too.

Hi Barbara Anne,
I went to see the new GI doctor yeaterday and it didn't take him 10 minutes to suggest that I might consider a reversal. he beleives that because of the "quality of life" issues, the recurring pouchites and now with the most recent biopsy of the pouch, I should consult a doctor at UCSF.
I thought it was intersting that he suggested that I see the UCSF surgen because they have the most experience dealing with this type of surgery.
One of the things we talked about, somthing my other doctors didn't seem to get, was how it was so hard to tell if the treatment made the pouch beter or if the flare up just subsided as it sometimes would. So sometimes Cipro "worked" and sometimes Flagyl "worked", and sometimes ti cleared up on its own.
Anyway the good news is that I changed doctors and now I have an appointment scheduled to talk to a surgen...

Hi Ray,

That's very interesting, thanks for your input. I just had a sigmoid on Wednesday and my GI told me he saw ulcers in the pouch, but could not tell me much without the results of the biopsies. I was bleeding quite a bit and have been worried, but yesterday the bleeding stopped. I basically stopped eating much to give the pouch a "rest". I was just drinking Ensure and eating a little bit of chicken. I am so glad to mentioned about the surgeons at UCSF. If I do decide to do the reversal, I would certainly want to seek out a surgeon who had the most experience with the procedure. My surgeon who did my colectomy and J-pouch was Samuel Oommen in Concord. He came highly recommended, and my results from surgery were good in some respects (no incontinence, etc)., but I feel I had pouchitis as soon as the ileostomy was closed. I don't know if he has done any reversals. I will probably have a consult with him, but would probably go to a doctor at UCSF if he/she had more experience. Can you tell me what surgeon was recommended to you at UCSF? I know there is a Dr. M. Varma at UCSF.

It's such a tough decision to make. I'm feeling a little better right now, and this is the pattern I have. Feel okay for two weeks, then I start feeling sick, and during the sick times is when I think I should do something about it. I do feel from a longevity standpoint, that I should have the pouch removed. I don't see how I can live into old age with chronic inflammation and taking so much antibiotcs.

I'd appreciate it if you could keep in touch to let me know how you do and any information you get from the surgeon. Hope you feel better!

Barbara

Barbara Anne,

I am going through the same thing as you, considering per. illeostomy. I have J-pouch and chronic pouchitis and cuffitis for 7 years. I am tired of this. I also got a lot of positive feedback from people about having surgery. I am going in to the doctor's next Friday for a scope and telling the doctor I am ready to have perm. illeostomy. I want my life back! Lot of luck to you!

Kerianne

Hi Barbara,

I know what you mean about swinging between giving the j-pouch more time and giving up. It's very easy on the days that you feel great to not want to think about the bad days. I know myself that when I had a good day I was hopeful that there might be a solution, but after 8 years of trying this med or this new procedure/operation I really did begin to run out of optimism.

It was certainly one of the hardest decisions I'd had to make and I knew that I couldn't ask people to make that decision for me. What I'm trying to say is that you will know when you've had enough and want to throw in the towel. There will be no doubt in your mind. Hopefully the feedback from the good people of this site will help you clear things in your mind.

I hope you can find peace with whatever you decide to do. We will all be here to support you whatever decision you make.

Take care.

Shell

Hi Shell,

Thank you for your words of support. I can't tell you how much the input from everyone on the forum has helped me. I have learned so much and it has certainly given me a lot of insight and information. I had no idea there were so many people with the same medical issues I have. Many doctors don't even have that much experience with our problems so you almost have to do your own research. I think your advice is so true, I'll know what I have to do when the time is right, but I have to get through some hurdles first, i.e., second and third opinions from doctors who do have experience with J pouch side effects, and then weigh the risks versus benefits of reversal. I will continue to monitor the site for new information and I hope I can offer help to someone who may need it also.

Thank you for caring and taking the time to offer your input.

Barbara

Tod, thanks for your reply, and Barara all the best. Im sure you will make the right decision on the end.

Jerry