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Having J pouch surgery

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Ulcerative Colitis
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Posted 2/27/2011 1:32 AM (GMT 0)
I just found this site and I just wanted to take a moment and tell a little of my story in hopes that maybe I can help someone.

I suffered with severe UC for about 7 years. I tried just about every drug out there...even Remicade and nothing helped. I would have very short periods of remission followed by long flares that just drained the life out of me. I had a lot of bleeding which would land me in the hospital in need of  a blood transfusion. Life was just miserable. My husband was at his witts end because he really thought he was going to drop dead one day from all this. That's how sick I was. I also have two young kids so the time had come that I had to make a decision to do something. I went to talk to a surgeon about the J pouch surgery and decided I needed to do it. I hated the thought of it, but I really didn't have any options left.

So back in June I had my colon removed and at the same time they constructed the J pouch. I had a temporary ileostomy for about 4 months. Honestly that was the worst part of the whole ordeal but I kept telling myself it was only temporary. Then in October I went back in for the last step which is reversal of the ileostomy and getting hooked back up. I was really nervous about how it was going to all work out because I remember my surgeon saying I may be going to the bathroom 10 to 15x a day at first. Well that never happened thank goodness and I am really happy with my results from the surgery. I'm not sick anymore. Never again do I have to look down into the toilet and see bloody water. No more running to the bathroom in hopes that I make it before I have an accident. I can eat whatever I want again (within reason of course!) I am just so grateful that there even was a surgery to help me. My surgeon told me my colon was so bad it would have perforated in a matter of months. So I know I made the right decision even though it was a tough one to make.

If there is anyone out there suffering like I was with no options left, surgery is definately worth looking into. Just find a great surgeon who has done many J pouch procedures. It is so worth it in the end once you get through the hard parts. My family is so happy to have me back on my feet and feeling good!

Posted 2/27/2011 1:46 AM (GMT 0)
I forgot to add one very important thing: NO MORE DRUGS!!! smilewinkgrin
Posted 2/27/2011 5:42 AM (GMT 0)
Nice to hear you got your life back! I don't even think I could wait half the time you did if I was in that bad of condition for that long. I have severe pancolitis & I was thinking about surgery after 3 weeks into my last flare! It was that bad. I'm in a mild flare right now & hoping it goes away once the 6mp kicks in.
Posted 2/27/2011 1:44 PM (GMT 0)
Thank you so much for sharing. It is so good to hear that all is well again. I think surgery is always in the back of all of our minds and alot of times you only hear about the problems (understandably as we are on a helping forum) but it is so good to hear a great story w/ a good outcome.
B
Posted 2/27/2011 2:52 PM (GMT 0)
That's why I wanted to share because usually you just hear about problems. There are a lot more people out there enjoying life after surgery than the folks who have problems. I think it's important to focus on that. I was really scared going in to surgery and I think it would have helped me to hear some positive stories.
Posted 2/27/2011 7:21 PM (GMT 0)
How many times a day did you go right after surgery and right now? I have my reversal on April 4th and my friends think I am being sarcastic when I say I can't wait. The first surgery really wasn't that bad, just getting used to the bag was hard, but all is good now.

Also did you have any blockages or pouchitis?

Thanks for posting. I haven't even had the second surgery yet and I don't have any regrets.
Posted 2/28/2011 12:10 AM (GMT 0)
Disneynut66:
Right after surgery I was going to the bathroom about 6 to 8x a day. Now 4 months later I go about 4x a day on the average. THere are some days I have to go more but not too often. I usually sleep thru the night but on occasion I have to get up once. I have no urgency at all....just the feeling like it's time to go....no mad dashes to the bathroom like in the UC days.

Knock wood: no blockages and no pouchitis yet...hopefully never! Good luck with your second surgery. That surgery day was a happy day for me...I was all smiles going into the ER...It was so nice to get rid of that bag!
Posted 2/28/2011 1:37 AM (GMT 0)
That is so great. You are a true success story. I have had no blockages so I am hopeful I never will...knock on wood. I am finally used to the bag, but I can't wait to get rid of it.
Posted 2/28/2011 1:37 AM (GMT 0)
That is so great. You are a true success story. I have had no blockages so I am hopeful I never will...knock on wood. I am finally used to the bag, but I can't wait to get rid of it.
Posted 2/28/2011 2:01 AM (GMT 0)
perfect post at the perfect time. been flaring bad again and seriously considering surgery. popped onto this site after ages away and bam! there is this post and it is exactly what i needed to see.
thanks
Posted 2/28/2011 2:26 AM (GMT 0)
Partial blockages are most likely to occur in your first year post surgery and are often at the site of the stoma. They are really nothing to fear, a bit uncomfortable, but knowing what to do when you experience one is key to managing them. Stop eating, walk, massage the area, and drink fluids. They will pass and you will know immediately when it happens. I've had my jpouch 10 years and have not had a PO in 9 years.

Sue
Posted 3/1/2011 5:15 AM (GMT 0)
I just found this site tonight, and I too wanted to share my sucres story. I am a 31 yr old male who suffered from UC for 5 years. I was a college athlete, and when I came down with UC, I was unable to play football any longer. The disease became so bad that I had to drop out of school and was afraid to leave the house. I took several bouts of medication, prednisone primarly, and even spent the money to try remicade when it was in the trial stages. I never felt like any medication ever even slowed down my disease. I was constantly bleeding and having accidents, even if I was only several feet from the restroom. After 2 stints of hospital visits for dehydration and just overall lack of health, I decided it was time to research surgery.

I called clinics and spoke with several respected gastroloigist who recommended the Mayo clinic in rochester minn. I contacted them and made an appointment with Dr. Devine, who by the way was one of the weirdest human beings I have ever met.. I was nervous to let this guy cut on me, but then I read about his work. This Dr was reportedly an amazing ileal pouch reconstruction surgeon.

On 2-14-06, I decided to go ahead with the surgery. I gotta tell ya, the first few days after were rough, especially seeing a bag on your stomach. Immediately after the surgery I dealt with a little dehydration, and severe weight loss. I'm normal 601, 205... But dropped to about 155 after the surgery. The first few weeks I was extremely weak, but no real pain at all. (other than a stiff back from 8 days in the hospital).

Eventually I began feeling better, and came to grips with Gavin the colosomy bag. I began eating good again, and quickly gained back my weight. My takedown surgery was scheduled for 4-20-06, and I was playing slow pitch softball in late march, prior to that surgery. So really, about 1 1/2 months after the first surgery, I was playing a sport. After the takedown, (the easiest and least painful surgery ive ever had) I was only in the hospital over night, just simply because they wanted me to pass stool before I left. I felt well enough to go home the day of.

Ever since the surgery, I have not even been back to visit a gastrologist. I've seen my family doctor once for a mild case of pouchitis, but other than that, no meds at all. I am now a police officer and currently on our departments swat and sniper team. As you can probably image, these are very physically demanding, and I've had no ill effects once so ever. The surgery was the beat decision I've ever made, and would do it again in a heart beat.

My advise to anyone who is considering the surgery.. Spend the money and travel to a clinic that specializes in this operation. It's a fairly rare surgery, and you don't want some guy that does one or two a year. My guy performed this operation once a week, and could probably do it blindfolded by now. Also, UC is very very commonly miss diagnosed my local dr. The mayo clinic will completely retest you for your disease. When I asked why, they told me 1 - 5 patients they get actually have chrones disease which the j - pouch surgery WILL not cure. Please be cautious, and I wish anyone with this disease my kind of luck !
Posted 3/1/2011 8:30 PM (GMT 0)
Thank you for sharing these good stories! I am meeting with a surgeon for consult tomorrow afternoon at Cleveland Clinic and this helps me tremendously. :-)
Posted 3/1/2011 9:01 PM (GMT 0)
run4pancakes:

Good luck with your consult tommorow. I didn't have my surgery at Cleveland Clinic, but I hear the surgeons are J pouch gods there! You will be in great hands.
Posted 3/1/2012 12:53 PM (GMT 0)
Wow! I'm so glad I found you guys. I was doing research yesterday on the JPouch surgery as I'm going for a consultation this month. I came across forums and started reading them. All the people on there had nothing but terrible things happening to them especially with the pouchitis. There seemed like there were so many who were having nothing but problems and were actually going back to having the ileo bag.
Posted 3/1/2012 2:33 PM (GMT 0)
Peagreen,

Like this site, you get more problem people on jpouch site than those out living life. The satisfaction rate for jpouch surgery is over 90%. I've had my jpouch for 11 years due to UC. It's been the best 11 years of my life. I caution you to choose a very experienced surgeon. Do not have this surgery in your local town, a VA, or through Medicare. Go to a metropolitan area, get a recommendation from a jpoucher, and then ask your CR surgeon for a patient referral. This is major surgery and you need the most experienced surgeon for optimal results.

Sue
Posted 3/1/2012 2:38 PM (GMT 0)
     Just sticking in my 2 cents.  I was not a candidate for j-pouch, reasons age (63 at time of surgery), prednisone dependent for two years prior and other health issues (uncontrollable high blood pressure and type 2 diabetes from prednisone).  My surgeon said the j-pouch, for me, would require three operations and be more stressful on my system than open heart surgery.  He also required me to pass an echo stress test... shocked .  UGH...that was awful..lol.  But, I passed it yeah !

     My total colectomy with end ileostomy was performed on June 28,2010.  It was a long recovery, but OOOOOOOOh so worth it! 

     I went from taking 17 - 25 pills daily plus rectal meds down to only one pill daily and that is for my WELL CONTROLLED BP.  I no longer have diabetes but, thanks to prednisone, will forever have full blown osteoporosis.

     I am NOT pushing surgery, but like other fellow ostomates here, want to say it is an option.  My family physician said I have a good twenty years left in me...woooo hooooo!!!

     Again, I say, thank you to suebear for making the statement that my GI doctor was NOT my advocate.  My family kept telling me that, but it wasn't until I needed that little nudge to make me see the light...lol.

Posted 3/2/2012 2:13 PM (GMT 0)
Thank you SueBear for your feedback.

You are right, I was reading on forums where everyone was having nothing but problems with chronic pouchitis. Did you have any problems at all? I'm afraid I will be in that lesser group of people who will end up with nothing but problems. It was also stated to me that my age (54) can be a factor as well. It's scaring me big time. These people are going back for reversals to a permanent ileo bag.

My doctor didn't want me going to someone here in Connecticut. He couldn't stress to me enough on going to Mt. Sinai in NYC so he referred me to surgeons who do this surgery all the time.

I've been told and read by many that the 1st year can be very difficult with pouchitis. I'm very concerned about that. So I guess the question is how is the 1st year with the JPouch? Do many have severe pouchitis problems? Even a doctor I went to here stated the 1st year can be bad due to the adjustments your body has to go through. I would like to hear from anyone who can give me feedback on this. It's greatly appreciated!

Christine1946 - I don't mind you sticking in your 2 cents! The more I learn of this procedure, the better off I will hopefully be!
Posted 3/2/2012 2:16 PM (GMT 0)
Oops! I forgot to ask. Has anyone had the BCIR procedure and if so what can you tell me about your experiences. What made you choose this procedure versus the JPouch procedure?
Posted 3/2/2012 2:35 PM (GMT 0)
Peagreen,

54, too old!!! Ha ha, hardly! My friend Gloria had the jpouch surgery at age 69. She's 81 now and doing fine. Met another man in his mid 80s who had jpouch surgery and he is doing fine as well. Age has nothing to do with the outcome; it's other health conditions that do.

I've had pouchitis once in 11 years. It was no big deal, feels kind of like the flu. I think you were told wrong, pouchitis isn't predominant in the first year, the first year comes with challenges in recovery, not pouchitis. However, recovery is very easy when you're healthy. Even though recovery is hard, as with most surgeries, it didn't stop me from immediately getting back into hiking. I went camping 6 weeks post surgery, traveled through Europe at 3 months post surgery and did a half marathon at 6 months. The first year does not mean you're lying around the house recovering, recovery takes place as you engage in your normal activities. I went back to full time work 3 weeks after surgery.

The k-pouch and the BCIR are options but most people that select those do so after a failed jpouch. Very few opt for them initially. Those surgeries aren't widely practiced; there are only 2 hospitals in the US that offer the BCIR, one in Los Angeles and one in Florida. Recovery from those surgeries is difficult too and maintenance, with slipped valves, can be ongoing. Basically the jpouch is the newer surgery that is considered the gold standard over the k-pouch and BCIR.

I think it's important for you to know that there is no PERFECT surgery for UC. Each choice has its positives and negatives and you need to pick the surgery that best suits you life style. I was dead set on a BCIR but after creating a list of pros and cons and looking at my passions in life, it was the wrong choice for me. I still feel that way 11 years post surgery.



Sue
Posted 3/2/2012 3:08 PM (GMT 0)
Wow I'm so glad I found you! I think I was told wrong also as at 54 I don't consider myself old at least not yet!! I just happen to come across the BCIR procedure in my research on line. I would definitely have the JPouch done over the BCIR with that being the last resort.

As I continued my search I've been finding individuals who have had this procedure and all have said that it changed their lives. I feel much better knowing that there are many who have great outcomes with the JPouch surgery. I hope that my outcome is of the same as yours!

Thank you!
Posted 3/2/2012 3:21 PM (GMT 0)
Peagreen,

I live to dispel rumors! My GI tried to talk me out of surgery; he said I'd have permanent diarrhea with a jpouch. Mind you, this was in the early days of the internet so there wasn't much out there regarding surgery. After several months of research, and conversations with people who had jpouches, ostomies, and BCIRs, I went for a surgical consultation and believed what the surgeon told me over what my GI told me. My surgeon was right; he said I would be fine and I am fine.

Sue
Posted 3/2/2012 5:22 PM (GMT 0)

Peagreen said...
Thank you SueBear for your feedback.

You are right, I was reading on forums where everyone was having nothing but problems with chronic pouchitis. Did you have any problems at all? I'm afraid I will be in that lesser group of people who will end up with nothing but problems. It was also stated to me that my age (54) can be a factor as well. It's scaring me big time. These people are going back for reversals to a permanent ileo bag.

My doctor didn't want me going to someone here in Connecticut. He couldn't stress to me enough on going to Mt. Sinai in NYC so he referred me to surgeons who do this surgery all the time.

I've been told and read by many that the 1st year can be very difficult with pouchitis. I'm very concerned about that. So I guess the question is how is the 1st year with the JPouch? Do many have severe pouchitis problems? Even a doctor I went to here stated the 1st year can be bad due to the adjustments your body has to go through. I would like to hear from anyone who can give me feedback on this. It's greatly appreciated!

Christine1946 - I don't mind you sticking in your 2 cents! The more I learn of this procedure, the better off I will hopefully be!

There is a Dr. Joel Bauer at Mt. Sinai in NYC that is one of the best. I was referred to him and met him but then I ended up having my J pouch surgery done in Philadelphia at Jefferson University Hospital and had a wonderful surgeon there. It's really important to go to a surgeon who has done many, many j pouches. I have had a great result from the surgery and I couldn't be happier. There is a lot of mis-information out there about the surgery so it's best to do your homework and go for a consult to get the facts. And as Sue pointed out, it's so much easier to recover going in healthy and feeling good than sick as a dog like I was. I had a tough recovery from step 1 but step 2 thank goodness was a breeze. Best of luck to you!

Ps-I haven't had pouchitis. It's a bit of mystery why some people get it and some do not. And if you do, it's cleared up quickly with antibiotics. My sister has had her j pouch for 20 years now and never had pouchitis.
Posted 3/3/2012 1:14 PM (GMT 0)
ByeByeUC,

Thank you for your info! Dr. Bauer is actually in the same office as the surgeon I was referred to Dr. Chessin. I was told that Dr. Bauer only performs the surgery the old incision way and that Dr. Chessin does it with minimal incisions which is what I would want to do. I'm trying to research Dr. Chessin right now to find out how many surgeries of this type he has performed but unable to get that info as of yet. It's just been great finding people who have had this surgery and have good things to say about it. How come you ended up in Philli for surgery?
Posted 3/3/2012 1:26 PM (GMT 0)
ByeByeUC,

Well I found it! they state they have done over 1700 operations! I think that warrants them knowing what they are doing!! thanks again for the info.
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