I had my pouch removed on the 13th. I was expecting the recovery to be painful based on the first surgical experience. In many ways this time around its been easier. I did not have any setbacks in the hospital and I'm able to move more than I did just a week out after the first surgery. However having had my rectum and internal sphincter muscles removed there is a new and more intense pain in my bottom complicated by the fact that its painful to sit down. Because of that I have found that managing the pain this time is more difficult. I know it will pass but I would love any tips suggestions from those that have gone through this.

Tiki, I just read your blog and my empathy is reaching toward you through this board. I don't have any of the advice you asked for as I've never been through your last procedure. I just wanted to say that I admire you for what you've been through and your sometimes having to be sole parent to a toddler. My kids are 21 and 18 - I was dx with UC when they were 18 and 15. I had it easier than you, I can't imagine caring for a young one and having all these issues and decisions. I hope you get those tips you're looking for and that your pain goes away as quickly as it came on.
P.S. When can you take baths? I'd recommend hot ones asap.

Thanks Lambiepie for the caring words, unfortunately theres not a bath in my future anytime soon. Since today is a wafer change day today I plan on taking a nice shower today and changing my bag then. I have had my wife home for a while now and have both her and my brother here to help out and help me and take care of my son.

Really this is the worst part - I promise. Take whatever meds you can to ease the pain. I found a heating pad or hot water bottle helpful when I was sitting. I slept in my recliner until my tush felt better - I was able to fine two or three positions in the recliner that helped. And distraction was a big help - I tried to keep busy - my mind if not always my body.

Sorry for the pain you are in Tiki and I hope it passes soon. I am equally sorry your pouch experience was so wrought with problems and did not provide you with a long-term solution.

Please keep us posted on your recovery and results with the end ileostomy. I am praying for a speedy and full recovery for you.

Best regards,

Mark

I just finished reading your blog and I wish you the best. I am in the same boat with chronic pouchitis and antibiotic use. My surgeon, unlike other doctors, is very concerned about long term antibiotic use and all the side effects. I am a mom of a child with special needs so all I care about is being around for my son and the possible side effects of the antibiotics my doctor is so worried about are weighing heavily on my mind. Although I am not in the same situation as you I do have pelvic floor dysfunction along with the chronic pouchitis and when the rectal pain and pressure is bad the only thing that helps is putting a heating pad between your legs on the area for while and I place pillows all around me to try to take the pressure off. Please keep us informed as I would like to hear if an end ileo is indeed easier to manage than a temp. ileo. Best of luck and focus on that little boy of yours you sound like an incredible dad!

Thanks for the warm wishes everyone.

JillM, did the hot water bottle/heating pad cause your bottom to sweat. My doctor wanted me to keep my bottom dry while everything heals so I've been concerned about that.

Shouldn't be a problem - I didn't have a problem with it anyway...

Try a heating pad on low to start and see how it goes...

Are you doing any better? I sure hope so. Are the pain drugs making any difference? What is you expectatiion for being back out and about and beginning your NEW life!

I met with my docs at Cleveland Clinic yesterday to better understand the pouch excision surgery and they have me quite frightened of the bottom wound healing process and pain. Were you sent home with a wound vac? Guess its just one big whopping hurdle that puts and end to all this jpouch misery.

Liz11: No wound vac and no horror stories. My surgeon did tell me I'd have some pain and trouble sitting down for a while, which is definitely the case. Not sure when I'll head back to work as my job has me sitting at a desk in the same spot all day long. I cant even sit in the car for a 5 minute trip to the store. It will eventually pass in a few months as i understand. I can handle dealing with a couple of months of pain for the long term benefits, which for me were a much healthier life. I did not have a pleasant experience at the cleveland clinic and felt Dr. Shen looked at me like i was out of my mind for wanting to remove my pouch and tried to talk me out of it. He did not listen to me at all and treated me as more of a number than anything else. Probably a very good researcher but a lousy doctor. I went to him to run some additional tests to rule out crohn's, igg4 pouchitis, and in the hope I could get some alternatives to the drugs I was trying to get off of. So far i have no regrets about my decision. I'm emptying my bag only 5 times a day just 2 weeks after surgery, I'm off the antibiotics, and I don't have any pain outside of the post surgical pain. My surgeon did a fantastic job too, sewing me shut without the Ken butt. You should make an informed and thought out decision but do not let anyone sway you one way or the other. Get answers to all your questions and weigh all the pros and cons. My decision isn't for everyone or for most.

This message has been edited. Last edited by: KissMyOstomy,

Hey Tiki,
Been reading your posts. Great to hear it's going so well for you. And when that surgical pain finally goes away, how awesome is that going to be!

It was interesting seeing that your surgeon was able to remove the internal sphincter muscles while leaving the external ones alone...definately hadn't heard of that before(that I can remember), but I'd be leaning that way if possible when I finally get the pouch removed. The leftover rectal cuff/jpouch is giving me more grief than the ostomy ever has. I seriously don't think people with unmanagable UC down low in their rectums are good candidates for jpouch surgery. But it would seem i'm in the minority in that thinking. As far i'm concerned my options should have been Kpouch/BCIR or Perm Ileo from the start. Where I live you may as well just say Perm Ileo as the only option lol...

Hope the healing continues as fast as possible for you.

Ad

Ad,
I think you may be right, as my UC was also down low. Though the chronic pouchitis as I understand has to do more with a bacterial imbalance but the same symptoms. Today has been rough as far as pain management goes but yes I can't wait till this pain goes away, then I'll be in 7th heaven. I'm surprised my surgeons don't handle the rectum removal the way my surgeon did but just goes to show that you don't need to go the Cleveland Clinic to find a great surgeon. Happy Holidays!

Just a thought....my surgeon told me not to sit on a "donut"-type pillow as it tends to put more pressure on the anal area than recommended. I don't know if you are trying to sit on a pillow or not, but I thought I'd mention this. I hope every day brings you more and more relief from discomfort. Best wishes.

Hi Tiki,

So glad that you're successfully through the surgery. I hope your healing process continues without complications.

I'm a little surprised to find you did not have a very good experience with Bo Shen. Most people on this website seem to think he's the best. I have an appointment with him in mid-Feb; I've scheduled a pouchoscopy and consult. I have similar questions such as you. Am I a good candidate for an end ileo, can I ever get off the antibiotics (or at least use the least damaging ones), etc. I have never been examined by a pouch expert; my gastro doctor is not very experienced with problem pouches. I'll try to get the most out of my appointment with Dr. Shen but maybe I should lower my expectations a little....

For those that have been through the pouch removal did you find that the rectal pain increased at all before getting better? I'm having a really rough day maybe the effectiveness of the meds are waning? In any case I can barely function or find aye relief.