Hi and welcome!

I had my j pouch surgeries a little over two years ago. I had the two step procedure so I had the proctocolectomy and the j pouch done at the same time first, then 3 months later was takedown. I would say its definately worth getting the j pouch done. It really just depends on the individual on what recovery time is like and how long. I was back to my normal routine of my crazy life two weeks after my takedown. Now for other people it could take months to feel better. But the bottom line is it does all settle down after a while. I only needed the pain meds for about a week after I got home from the hospital. A few things I would suggest to you is: Go very slow with food the first couple of weeks (they will tell you that you can eat anything) then slowly introduce new things. You will know when you are feeling more daring with food. Buy some Calmopseptine ointment in case you get some butt irritation. It works great. And do lots and lots of walking around after surgery. It gets things moving and reduces the gas build up. I would say the gas pains in the beginning are the worst of it.

Good luck with everything and let us know how you make out.

quote:

Is it worth getting a j-pouch or should I stick with the illeostomy and why?

Good question, but unanswerable. As you may know some do really well, most do OK and for some its a nightmare. Odds are you will fall into the "I am satisfied" group. The fact you are doing well on the ileostomy makes it a bit harder choice as some do not and can't wait to get rid of it. My only advise is to not use the logic that " I might as well try it, I can always go back to the ileostomy." Yes, you can do that but it involves several extra operations and is no "walk in the park." Do the research make a decision and go forward. Good luck.

I was a two stepper but my colectomy and J-pouch construction was done during the first step with the takedown completed in the second step. I, too, was very hesitant to give up my ileostomy for the same reasons you mentioned. In fact, I kept my temporary ileostomy for a full year and actually cried on the operating table just prior to being put under. That was over 10 years ago. I made the right decision for me. Best wishes!

Since you seem to be doing well with the ileostomy, and have misgivings about getting a jpouch, why do you want one? I decided to get mine mostly due to vanity, but also because I believed I'd have to make fewer trips to the bathroom (I was emptying the bag 7-8 times a day; my surgeon said I'd eventually be emptying the pouch 3-4 times a day, with full continence and no leaking). So I had the colectomy and jpouch creation done in one step, then the takedown several months later. Ironically, the loop ileostomy was easier to manage than I expected, and impacted my body image less than I feared. I therefore had misgivings about having the takedown, but figured I'd go ahead since I already had the pouch installed and could always go back to an ileostomy if the pouch failed.

Thirteen months after takedown, I'm still having issues with frequency, urgency and incontinence. I now see getting an end ileostomy at the start would have been a better choice for me. I also now know that getting rid of the pouch can be a major operation, with its own set of risks. I would therefore urge you to 1) ask your surgeon how much experience he has with removing pouches, should you be one of the few who need to have it excised, and 2) carefully consider how much you value the quality of life you now have. Some get the pouch to avoid worrying about the what if's of not trying it, but how much time are you really going to spend wondering "what if" if you're busy enjoying life with your ileostomy?

The j pouch has a 90% success/satisfaction rate. Pretty good odds that all will be just fine.

quote:

The j pouch has a 90% success/satisfaction rate

Yes but what does that mean? Most people that get the pouch are coming off of uncontrollable UC and or poorly functioning loop ileostomies. There is such a relief from that misery that any improvement would rate a satisfactory response. That said while some people are "golden" with the pouch I think (don't know) most people do as much adjusting to the pouch as the pouch does adjusting to their bodies. Not saying it isnt a useful and valuable procedure just one that is far from perfect and needs to be looked at with a critical eye.

Hi NicktheNurse, these are all great questions and you've gotten some great answers. For me, the surgical pain from the 2nd surgery was very minimal. The best barrier cream I found was called Anti-Monkey Butt. I found out about it on one of these discussion boards. I found it at my Walgreens store, some Walmarts carry it. Just be aware that the barrier creams work very well as preventitives, and not as good as treatments once you get the "butt burn". The best thing I found at that point was soaking in a warm bath. Make sure after you take a bath or go to the bathroom to DAB NOT WIPE, that's some of the est advice I got from someone on here. Good luck to you and welcome to the group!

I think Ceeeeeeceee is a good example of waiting until you want the surgery. My loop ileo was horrible and I could not get to take down soon enough. I've had and do have problems but would do it all over again. I wish I'd waited longer to have the take down so I say wait until you are sure it's what you want to do.

I'd suggest to have your surgery laproscopically vs "open". I've noticed that people in this support group tend to get back to work and heal quicker than those of us with open surgeries. So please investigate this.
Good luck and go with your "gut".

Thank you everyone for responding.

Marianne-
Thank you for the encouragement. I saw you’re from NJ under your post. Are you familiar with Englewood Medical Center in you guessed it Englewood NJ, a sister hospital of Mount Sinai? My Surgeon Michael Harris is there actually. I did extensive research on surgeons. I'm from the DC/Baltimore area and saw guys from the biggest badest hospitals around here (Johns Hopkins, University of Maryland Medical Center, Hospital Center in DC) he has been doing surgery for over 20 years specifically for IBD. Dr Harris has been involved in the IBD surgical program in NY since it started. Well, anyway I was just wondering if you’ve heard of him as all of the surgeons I spoke to down here have.

About the food, how long did you stay on clears after the surgery? Also, when introducing food what foods did you try first and did you find any that bothered you? Also you said you were back to your crazy life . Do you have a demanding job that your J-pouch has interfered with? I'm a critical care nurse and want to go on to NP or CRNA School. The surgeon told me there isn’t any job or training I couldn’t do with the pouch, but I’m skeptical, maybe just fearful. Any advice in that regard?


chiromancer-
Thank you also for the post. I guess I could have worded the question as, Does anyone think it was worth getting the J-pouch vs keeping an illeostomy? How was your experience with a J-pouch chiromancer? I also appreciate your constructive criticism about statistics. I'm aware of some statistics related to this surgery and they are under 5% according to my research from UPtoDate a physician used research database. What I'm looking for is patient experience, as a nurse I highly value that.

stpaulmom-
Anti-Monkey Butt, that is funny. Thanks for the response. I appreciate your advise about butt wiping Funny talking about it sometimes, huh. I'm always teasing my wife about poop. How many times a day do you go to the bathroom with your pouch stpaulmom?


ISeeUC-
Hello and thank you for responding. First, I'm very sorry to hear your difficulties with the pouch, its bad enough you have to suffer through UC, a first surgery, and now this. Well I pray God gives you strength to work through your suffering. It's funny you mentioned vanity. One of my hesitations is a question to myself regarding being vane. I'm an avid hiker and mountain biker, I enjoy swimming also. I feel it would be more enjoyable without having to worry about falling on my stomach, causing trauma to the ostomy and having to wear sport bands when exercising. I'm 31 and have been married 4 years. We have a 5 month old. We want more kids and even though my wife says she doesn’t mind the pouch when we are intimate I do. I know that’s pretty personal, but I feel that is what this site can be about, i.e., being open so you can find the right support. Like when you give a history to a doctor or nurse, if you leave out vital information, they cant help you as effectively. I really like your self analytical question 2 as I'm confident in my surgeon. He does 2-3 J-pouch constructions a week, has been for 20 years.
I value my quality of life immensely (its winter though so that’s off season) I have been working over 40hrs a week, sometimes 50 or more, playing with my beautiful little girl, enjoying my marriage and friends. I do however plan to go to grad school and train to be either a Nurse Anesthetist or a Family Nurse Practitioner and I’m concerned that getting the pouch may limit my stamina. I’ve have been what ifing myself. With the surgical method I had, I have a colon stump that would have to be removed with my rectum to avoid cancer risks anyway. So If I keep the ostomy, I would have to have that removed within the next couple of years and then I wouldn’t have the choice to try the pouch. With my career and present job, director, wife’s job, etc., its is a good time to do it. Thank you again for your post I really appreciate it.


TE Marie,
I appreciate your post and am sorry to hear you’re having problems still. Do you mind sharing more? The laperascopic method is not an option for me as in males the infection rate and leakage potential for pouches is greater. The pain is usually less, your correct on that. I had an open first step, but my incision is only a little over 3 inches. I like your go with your gut pun thanks it made me smile.

CEEECEEEE
I’m glad to hear your doing better and for what you shared. That’s excitin

Hi Nickthenurse,
I didn't realize you were a man until I read your 2nd post. Have you looked in the Male pouch Forum on here yet. I think there is or are past discussions concerning fertility. I think some have problems after j-pouch surgery.

I had an abscess under my incision that was cut out during the take down surgery that I had to pack for months as it was a dirty wound. So it looked like I had 2 belly buttons My Internist stopped another when it was first starting up by aspirating it so that was nothing. 6 months after take down I had an incisional hernia that was acting mechanically as a partial obstruction and was painful. I was expecting a small incision and woke up with my complete mid-line incision stitched up again, and my 2nd belly button was gone, yea. I asked why and my surgeon said it was a big hernia. He's a good surgeon that trained at the Cleveland Clinic.

I still had pain that required Norco daily. A year after my take down the surgeon did a "straight" scope. Maybe you've heard of it before but I sure hadn't - ouch, felt like a metal broom stick was stuck up my butt! He wrote me a script for 14 Anucort suppositories and said I had some inflammation around my cuff. I had told them I had been bleeding and a few days before quite a bit.

I came home called my GI. He called he surgeon to see what he saw as there were no biopsies or pictures, just what the surgeon saw. He put me on Canasa and ultimately did a proper flex scope a few months later, after I didn't get better. I not only had cuffitis but C-Diff as well. He took pictures during the procedure that were scary. He was quite shaken that the C-Diff had not gone away. A few weeks later we decided I needed to see someone more experienced so his nurse scheduled me an appt. at Mayo with one of his friends, he studied there. He had sent me there in 1998 for a second opinion on my UC diagnosis, after I ask for a 2nd one.

Dr. Loftus at Mayo ordered tests again and I was there 3 days. I elected not to have medication during the pouch scope, as the nurses told me the doctor that was performing it often did colonoscopies that way. He said during the scope it was the best looking j-pouch he'd seen in 5 years and asked if I had the surgeries there. It did look nice and he explained it all to me as he examined it. He even went 2 feet up into my small intestines. Then he came to the cuffitis and said, it was good looking until he came to the cuffitis. I was reassured as the pouch looked better than my colon ever did.

Another pathology report of UC in the cuff and the C-diff was finally gone. Diagnosis chronic cuffitis, IPS, adhesions and my thyroid was still out of wack. He put me on Canasa with a 6 month prescription. I took it every night until I felt like it was gone then went down to every other night and after that to several times a week. I'm currently back to every night as I think I went down too fast. My appt with him was the beginning of May, 6 months ago.

I also have fibromyalgia, neuropathy in my feet and some other health problems which complicate things. This got worse with surgery and appears to be in a constant fibro flare - or my new norm.

I started VSL#3DS a month or so after take down and have not had pouchitis. Good thing as with my C-Diff, which I'd had before my colon was removed, there are antibiotics I shouldn't take and I shouldn't be on them full-time.

So there is my complete history. It's not pretty but could be worse. They left in 2 cm of my rectal tissue at the cuff when then did the double stapled procedure. The surgeon's notes also mentioned adhesions in my abdomen from my hysterectomy. So when they say they have cured us they have not if they leave any cuff in there plus I think the inflammation goes elsewhere in the body - my worsening fibro. You should ask about a mucusostomy, they scrape the remaining rectum before sewing the j-pouch to the rectal cuff. Or you might ask about the hand sewn procedure where they take all of the rectal tissue. This option is thought to be one that has a higher percentage of leaving the patient incontinent.

I'd still do it over.

quote:

How was your experience with a J-pouch chiromancer?

My experience with the J was not good. I was a marginal candidate to begin with. I fell for the you can always go back to the ileo if it doesn't work out line. The ileo was for me, like you not a problem. I had UC for 25 years that developed into rectal cancer. I had the surgery for the rectal cancer not the UC which was well controlled with 5ASA drugs, VSL#3 and occasional other meds. The UC did not much affect my life. With the J I suffered from pretty bad incontinence, mild pouchitis and continual butt burn for about 20 months and then had it disconnected but left in place,I have an end ileo.

I realized that I was modifying my life style to meet the pouch's requirements. Most people do this to some degree but for me I observed I was much becoming less active. The pouch was the center of my focus. I did not want to lead a pouch centered life. Though I am relatively old (60) I have had a very active life and wanted to continue that. I am scheduled to have it excised in two weeks.

Good Luck with your upcoming surgery Chiromancer. When they say you can always go back to an ileo they don't mention the adhesions you can develop from each surgery. 60 is the new 40

Nick you were smart to check in on this forum early in the process. The search functionality is great too.... just put a search string in search box and you'll get a whole bunch of great posts returned to address questions you might have...

Good Luck !!!

Hey TE Marie,

Thanks for sharing, what a mess you went through, glad you’re on the up swing
Cleveland Clinical and Mayo both are great hospitals with great surgeons.
My sister suffers from Fibromyalgia that stinks. I don't know if you smoke, but it’s heavily documented in literature that stopping will improve symptoms. Also, exercise helps.
I have my VSL#3DS ready for the day after the surgery, or whenever I can take PO.
I'll ask him about the mucusostomy.
I appreciate all the advice.

Yo Chiromancer,

A lot of people lead great and normal lives with illeostomys. I think you'll do great. If I wasn’t a prime candidate for the J-pouch, my surgeon would not do it. I appreciate your comments and hope the best for your next surgery.

Sup Mike,
Thanks for the blog tips. I'll do that.

Sorry your sister has Fibro, does she have IBD too? I hope not. I quit smoking years ago and can't exercise because of my foot pain and numbness. Some days I can't drive as my feet are too numb. I have to hold on to hand rails going up and down the stairs all the time.

Make sure to let us know when you are going to have your surgery and good luck!