Should I get j-pouch surgery??

Colitis*

Hard to say, only you will know when you have absolutely reached your limit with UC. Just a word of advice, do your research VERY well. I wish I had. Good luck to you. I know how scary it is to be in the hospital for a flare not knowing what the best choice is...

My doctor told me that it could take up to six months for Imuran to reach full effectiveness, and at the time of my colectomy I didn't have that long to live if we didn't do something. Having a j-pouch is not the same as having a healthy, functioning colon. There are best case scenarios, and there are worst case scenarios. Most people fall somewhere in between. It will have to be your decision when you feel your quality of life would be better with a change. Are you in the hospital or in bed at home enough that it is impacting your life, or are you still able to get out and about as long as you know where every bathroom is located?

I wish there was an easy answer for you.

Do any of you regret surgery ? If you do can you tell me why, my gut feeling is to go ahead with surgery but it is such a huge step but also I'm almost bald from so much medication and when I was on humira I almost felt as if I was going to have a stroke and I'm home with 2 babies all the time which is why medication scares me as well

I don't regret the surgery, because I had reached a place where it was literally a life or death decision. That being said, I also don't recommend waiting until you get to that point if you think you are going to have the surgery sooner or later. I had my colectomy in the middle of the night; I got back to my room about 3am, and about 7am I woke up and my husband asked me how I was. I replied, "I think I feel...good!" He said I looked so peaceful, which was a complete change from the previous night.

For me, the ostomy was a complete nightmare, and I am not willing to return to one under any circumstances. I am allergic to pretty much every adhesive ever manufactured, so we never found a pouching system that worked for me. We even tried not using the adhesive and holding the bags on with a special belt, but invariably that method would wind up leaking as well.

I do have some complications that I deal with now, but I am still grateful for the privilege of pooping out my butt.

Marybeth,
I cannot give 'advice' or make a decision for you but when I got really, really sick as a teen, I looked for any and every cure on the market, tried lemon, hot water, cayenne pepper and maple syurp 30 day fasts (!!!), chiropractors, dieticians, every med on the market at the time, and every single 'other' surgery possible to help me not lose my colon....the worst thing in the world to me and my family was the thought of my losing my colon...the un-reversabale act, the ultimate sacrifice etc...in the end, with all of the problems that I have had with my k pouch (same pouch, different exit strategy) 33+yrs later I still do not regret it...I had to try it all, go through every step and eventuality in order to make peace with the decision...in my case I wasted 10 precious years and my whole adolecence...in the name of never giving up or in...after my pouch creation there were some problems and difficulties...a 1 step surgery turned into a 1yr, long and painful 3 step but after that I got myself a real life, threw all of my meds out the window and was able to dream again...it is not, as many will tell you, a replacement for a healthy colon but an amputation of a vital, sick organ that is making your sicker...you will know when you are ready and no one will ever be able to decide for you... I wish you a peaceful choice and an even more peaceful decision
Sharon

Thank you guys for relying I feel pretty confident I think I'm going to tell my dr when I see him today to schedule the surgery for the j-pouch.

Marybeth,
Please make sure that you have thought it through before jumping in...we are all anxious for the pain and suffering to be over and to move on towards a healthy and happy life free of disease but please know that there is still a small percentage of people who are not pleased with their outcome and are often even dissapointed with it and finally choose to go back to an ostomy...give yourself at least 48hrs of reflexion time and disscuss the options and possibilities with your husband and family members...I am not a naysayer but just want you to make the decision cool headed and not through sleepless frustraion and pain.
Sharon

Marybeth,

I am probably one of the first people on this site to have had the surgery.I was one of the first in Montreal in 1984 at the age of 17.

It is now 30 years later, and for the most part I am okay. I do require surgery again to correct how poorly (if that is the right description) the orignal surgery was done.

There is one important thing to note. The longer you live with UC, the increase you have that it could become cancer. This statement does not mean the chances are high, just higher than the population that does not have UC. Every year living with UC increases your chances for colon cancer compared to a person without it. Just something to consider.

The surgical techniques for the operation are incredibly advanced over what was available in 1984. I was in OR for 12 hours. I somehow doubt that is the case anymore for the current surgical procedure that is done.

The best thing I can recommend is to be informed and get multiple opinions. If your quality of life is low, and this disease is really affecting you, it probably is worth considering.

I do everything I possibly can and have no limitations from having gone through the surgical procedure for UC.

Good luck and feel free to contact me if you have questions.

Thanks,

Mark

Congratulations on coming to a decision, Marybeth. Most people have an excellent result (and thus are less likely to spend time on a support forum). I'd suggest choosing your surgeon very carefully, in terms of experience and results with J-pouches. It's typically a brief but critical relationship.

I have no regrets either, but there definitely are those who, in hindsight, wish they had not had it. This is mostly due to poor outcomes, complications, etc., that led to failure and ileostomy. They feel that for them, opting for ileostomy would have been a better option. But, none of us have a crystal ball, and that is why it is such a difficult choice. It IS a big decision and it can be life altering. Hopefully, it is life altering in a good way.

I had plenty of complications, some quite serious, yet I am very happy to have had the option for a j-pouch, since most of my life only an ileostomy was available.

One thing I need to caution you about, and that is choosing surgery solely for the reason to avoid drugs. I say this because there is no guarantee that you will be drug free after colectomy, as IBD can continue in the retained rectal cuff, as pouchitis, or even later be found to be Crohn's. In addition, you can develop related autoimmune diseases that require the same drugs. My point is, that it is best to choose colectomy and j-pouch to improve your quality of life, with a hope of eliminating or reducing your drug use. But, if that is your primary or only reason, you can be setting yourself up for a big disappointment.

I am one of those people. I still take Azulfidine, Simponi (formerly Humira), occasional prednisone and Flagyl, and a few other things. But for me, I am happy because I am functional and able to live well.

Jan

I have no regrets bc my UC was so bad, there really was no other option for me. I lived with it fully flaring for 5 years.

I've hit some bumps in the road, some right after surgery, some a few years later...and now. However, none of the problems I have had are due to a failed pouch. The pouch gave me much better quality of life over UC and I was grateful the option was there, rather than just an ostomy. All in all, I felt very lucky and was at peace with my decision.

I agree with everything the others have said, including being sure you are at peace with it and have researched your doctor thoroughly.

The folks in here are a great reference for medical institutions and, in many cases, specific doctors.

I also recommend fully educating yourself on what to expect with the surgery, a temp ostomy, life with a J pouch and possible problems you may encounter with the pouch.

Like many, I was completely in the dark on all fronts. However, this forum is an amazing resource that will help answer all these questions for you....Even questions you didn't know to ask. From what I've seen in here, this group is far more educated than any doc I've ever met. You name it, they've seen it.

So read, read, read. I wish you all the best.

Mine was a life or death situation as well, so I had little choice in the total colectomy.

However, I have no regrets in the 3-step surgery. My pouch is functioning flawlessly and there is little change in my life style pre/post j-pouch.

I eat the same crappy food, chinese take out, get on healthy eating kicks and go completely vegetarian. No problems except broccoli. . .that vile weed. . .gives me gas something fierce now.

But no, no regrets at all on getting the J-pouch.

With the Pain and recovery time do to a major bleed from a loose stich (12 pints). A lost summer and a year off work I wonder if I made the right choice. I had no issues with UC I was not in pain, My life was going fine. All I had to go on was a nameless person on a report saying I had High Grade DX that could become cancer. So I was left with the choice 1, have the colon removed befor any issues start or, 2, wait till the issues start. In the end (no pun) I went with the premptive strike and had the surgery. Every day for 9 months with the bag I questioned my choice, but now that Im into my second month post takedown I know the J pouch was the way to go for me. Hell I was winter camping last weekend, loaded the tobogan straped on the snowshoes and away I went 2 nights in a tent on the side of a lake. and yes the ice fishing was great. but FYI MRE's are a tad bit constapating.

It's a huge decision and not one that I came to quickly. But in short, I love my j pouch and I wish I had skipped all the heavy duty drugs and had it done a lot sooner. There are so many things to consider.....good luck.

Please look into the different methods of surgery to discuss with your surgeon.

I wish I'd had it done laproscopically, which leaves fewer scar tissue. It probably wouldn't have been doable in my case due to past surgeries.

There are also several ways to attach the pouch.

1) they leave 2 cm of your rectum attached to your rectal stump and staple the j-pouch bottom to it "double staple procedure" (I have this and have recurring cuffitis (UC) in the 2 cm remaining) This outcome is still rare. The reason they do the surgery this way is to help the patient avoid incontinence.

2) They do a muscuomy (spelling?), scrapping of the remaining rectal tissue, before hand sewing the j-pouch to the rectal cuff.

3) They leave no rectal tissue at the cuff and hand sew the j-pouch directly to the rectal cuff. This has a higher probably of leaving the patient incontinent.

You should ask your potential surgeon how many procedures s/he's performed and where s/he did his fellowship at. Also ask what type of procedure s/he will be doing for you. As well as getting second opinions or references from your other doctors, GP and GI etc.

I looked up my surgeon on line and found out he trained at the Cleveland Clinic so stayed local. My pouch is well constructed, per the GI that scoped me at the Mayo clinic. I am under their care now for my cuffitis and IPS. They are too rare for my local GI so he sent me to Mayo to an IBD specialized GI.

I've had a rough few years and wish I'd had the surgery years before I did.

The surgeries really take a lot out of you. It' nothing like my other surgeries, such as my hysterectomy. I was back at work part time a week afterwards. Expect a very long recuperation period, even if you are in the majority and have no hiccups after surgery.

Please keep us posted!

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2) They do a muscuomy (spelling?), scrapping of the remaining rectal tissue, before hand sewing the j-pouch to the rectal cuff.

I heard somewhere this one isn't done anymore, no?

No matter, lots of good info in this thread. I was another early jpoucher- had mine done at 19 years old in 1987 after UC diagnosis in 1986. What I would add is that the decision to have a jpouch isn't as bad as you might think. A few points to consider. First, after surgery you will be feeling much better than before anyways, and that's a big plus. The reason it gets tricky is that there are those of us who had miserable experiences with a jpouch and ended up with a permanent ileostomy. The point there is that the ostomy isn't a bad thing either, it's just different. The last person I know who chose the ostomy over the jpouch did so because he was in his 50s, had a family, kids, etc, and simply wanted to move on with his life without anymore problems. He didn't care about wearing a bag, so the ostomy was the best decision. When I was 19 I didn't want to wear a bag and gave the jpouch a shot. Miserable failure and ultimately had the ostomy in my early 20s. No regrets at all. Not wanting to wear the bag is a perfectly good reason to have the jpouch. The only thing to then to keep in the back of your mind is, if problems occur then what? Sure you fix them and keep going. But sometimes the problems are like the Energizer Bunny, the just keep going, and going. Talking with your surgeon about that is important because some may not bring it up unless you do. My surgeon was like that and I don't agree that's a great approach. However, many people have been very happy for a long time and I hope that's the course you take! If not, speak up and talk with your doctor. Always remember that surgery is supposed to give you your life back. My ostomy is the one that did that form me, and only you can decide how well your quality of life is. I've seen friends who get stubborn in that they battle with their jpouch because the don't want to wear a bag. I got tired of fighting with it and have no regrets. But it did take me 3.5 years and 12 operations before getting there, so count me in as one of the stubborn ones too. Wishing you a speedy recovery!

I believe it's still done but not many doctor's know how to do it. The double stapled procedure is the most common.

Thank you all for sharing your experiences I got the surgery done on march 15 and I will be going in two weeks to schedule my takedown surgery, I can say although its strange with a bag right now I feel I have more of a life without ulcerative colitis, after hearing how bad my colon was I just decided it was the best choice and I'm glad I'm not on any meds anymore

Marybeth,

I suffered with UC for around 8 years, 1985-1994. I too was sick and tired of the drugs, the pain, having to be close to the bathroom. As time went on, I had some good days but they became less frequent.

I had my 1st takedown in Sept, 1993. Prior to that, I wanted to avoid surgery at all costs even though my doctor was pushing for it. The thought of having a bag was revolting to me. But mine got so bad, bleeding, weak, loosing weight, that to just take a shower, I would have to sit on the bed because I was exhausted. Then I worked full time as well. By this time, I could barely function and by noon at work, I felt like a fighter who got is bell rung and my walking became more like shuffling as I could hardly stand. That is when I finally gave up and had the surgery.

The day before my surgery I had to have a blood transfusion, two pints, because I lost so much.
Mine was a 3 step procedure. After my 1st takedown in Sept, I had the J-Pouch created in Jan, 1994 and then in April, 1994 I had the bag removed so I don't live with the bag anymore.

But there have been complications along the way. The Pouch is not like having a healthy colon. Also, you have to watch what you eat and everyone is different in what foods they can tolerate. So its trial and error. You will learn and it is an adjustment for your body and your life. Your body will adapt.

However, my only regret was I didn't have the surgery sooner. You have to do what is right for you. With me, I had enough. Good luck with what ever decision you make. I only wish I knew about this site years ago. There are a lot of good information here with a lot of great people to support you. Let us know how you are doing.

Rocket

Marybeth, glad to hear you're not on meds anymore. If you have any questions or just want someone to bounce ideas off of, let me know. I msg'd you my phone #. I still have some ostomy supplies as well. If they fit you, you can have them.

MaryBeth, I am part of the group that have had theirs a long long time...mine was done when I was 15 in 1976...it was experimental and my life was on the line...best decision that was ever made. With few exceptions, it has been great and I would do it again. I'm not going to repeat what every one has already told you as they apply to myself as well. I have an 11 year old daughter I'm so proud of and happy I can be with. You have to get thru the rough stuff but I still feel like it was all worth it. Know we are all here for you

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I can say although its strange with a bag right now I feel I have more of a life without ulcerative colitis, after hearing how bad my colon was I just decided it was the best choice and I'm glad I'm not on any meds anymore

Hi Marybeth, Couldn't have said it any better! Wishing you a speedy recovery and an easy transition to your new life!

Congratulations! I'm glad you are feeling better

I woke up the day after my colon was taken out feeling like a new person. The UC had been slowly getting worse and I guess I didn't realize just how bad it had become because I literally felt fabulous once it was gone. I now take Cipro for chronic pouchitis and Tincture of Opium because I cannot tolerate Immodium for frequency. In spite of this, life is good. Having the pouch is just normal for me. I would do it all again if I had to. I hope your recovery and life without the colon is as good or better than mine.

Hi Marybeth I am in the uk I had a pouch done after having Uc for about 15 years.
For about 15 years after the opp things have gone very well taking the correct tablets doing what I am told etc, i have been fully active doing many sports at competition level so it has been a success, but we are all different! Here is another possability.

I am now 54 and was diagnosed with coeliacs ie wheat and gluten intolerents two years ago, this was not good and due to my already low inability to absorb necessary fluids etc in the pouch it has caused problems, but has after much research it has made me wonder if this or another allergy was the original cause of the uc imflamation?

If you really need the j pouch then do and be positive but most importantly from my experience I would explore further, ie professional diet advise etc. Question why the colon is inflamed in the first place, could it be an intollerance to a food? could a change of diet do the trick?

It might well not have sorted me out 15 years ago but with hindsight I would work very hard first with professional allergy and diet advise just incase, long term I suspect not loosing your colon is better if poss.

Worth a try best of luck Dave

I had UC for 10 years before I finally got the surgery. I had some complications but now I'm fine and its the best decision I've ever made. Yes, you will go to the bathroom a lot, but now it won't (hopefully) be as painful. Good luck!

I also didn't have much choice. The med choices of today weren't available back in 1991, and I'd been suffering with UC from 1982-1991. I never was a "sick" UC sufferer, though.

Yes, I was a slave to the bathroom, but overall, I never had pain and never felt bad, really. I did everything I wanted as a kid, and no one I didn't tell about my UC was any the wiser that I had a chronic illness. But TPN and high dose steroids in the hospital failed to put me in remission, so surgery was my only choice.

I have no regrets. I've had very good years with my pouch. Yes, there were times I "went" more than others, but I'm at about 3-6/day at this time, after Cipro courses for pouchitis. The number is also influenced my what I eat and when I eat. I never wake up at night to use the bathroom unless I've eaten later than I should have, or eaten more, or more indiscriminately.

There was no way I could con't living with UC back then. My surgeon said it was very diseased and friable when he removed it.

There are options today to not have such huge abdominal surgery (lap surgery for it didn't exist yet back then). I do recommend the two step surgery. My surgeon only briefly tried the one step in the mid 90s, and he had one man do very poorly, and never did one step again. He always does two. And I've read a lot about people doing poorly after one step surgeries/becoming septic... so, that's my only other advice to consider.