Success Stories Please :)

Hey Everyone,

I am new to this site, and just had my closure (take down) surgery a little over two weeks ago. After perusing this site, I have noticed that most stories here are focused on the various complications with the jpouch.

In order to balance out what I have read so far, I was hoping that, if any of you out there would be so inclined, perhaps you could recount some success stories? I would LOVE to hear from people who have had few problems with the pouch. I appreciate that the first six months or so are always a bit tough while the new pouch adjusts to its job, but are there any people out there who have sailed through this procedure? I am guessing if there are people who have, they may not feel the need to join a support group site,.. but perhaps there are some out there. One can hope.

Thank you!!
Original Post
I am 33 years old, diagnosed with FAP in 2005 with both J-pouch surgeries in 2006. With regular annual checkups, I have had very minimal problems with my pouch or my lifestyle. With use of medication, I can get my bowel movement frequency down to as little as 2 per day with a 'bad' day being 6-7. Diet can influence this greatly. The only real problem I have experienced with the pouch is the rare occurence of leakage. Again, diet can have a great influence on this as well. Stuff like fruit juice, alcohol, greasy food, etc. can lead to 'problems' so I avoid this stuff after 5:00-6:00pm. Overall, I have little to complain about. I've done as the doctors have told me to, keep up on preventative care, and eat right. Hope this qualifies as a "positive" J-pouch story. -Tim
Hello. I had the jpouch surgery in 2010 after my son was born. The first 3-6 months were a little challenging, just in the sense of getting used to everything. You do get used to what sits "right" with you and what doesn't. Just takes some time. I also can make it with just 2 -3 bathroom trips a day, and generally never have a problem going out during the day. For me, the Metamucil is my "magic potion" and cannot live without it. Twice a day and I am good.
Good luck!!
Wonderful to hear!! I think this is the first I have heard of anyone getting their BMs down to two per day! Something to aspire to! Thus far I've managed to bring my BMs down to two times per night and have felt darned good about that. Daily BM totals have been about 10, but I am only at the one month after takedown mark. Here's hoping I can get it down to 2 times per day some day soon!!

I think I have been happy with the stool thickness so far and don't seem to need the metamucil. I have noticed if I consume sugary things, my stool loosens, so I am becoming mindful of this.

I am taking VSL#3 prophylactically.

Thank you for your responses! Smiler
I had surgery 22 years ago, and have rarely had issues. I eat pretty much anything I want, and b/w 3-6 times a day (depending on what I eat), and rarely if ever at night. I don't have leakage either. I only recently had a bout of pouchitis and a fistula form... That's my first new issue in forever. But i was scoped when I had my seton placed, and pouch looked good! Even with the pouchitis scope, I only had small random aphthous ulcers, but biopsies showed pouchitis. My life with my pouch has been hands down a good one, I've been lucky. Smiler

I'm on no meds, and have never needed thickeners. I don't know how I lucked out on that, but I did.
I've had my pouch since the end of August 2009 and frankly have for the most part been pretty happy with it. I've always eaten what I want of course recognizing that sometimes there's a price to be paid. I've had minor cuffitis but have so far been able to get it under control before it got out of hand. ( I find 2-4 Pepto Bismol tablets for a couple of days seems to work).

It is my understanding that about 90 % of people have little problem with their pouches which gives most of us hope.

Best of luck!

Lew
True success is not coming to this site anymore for help. I have been to this site many times and have found lots of help in my time of need through the years. cant even remember the last time I have been on. Jpouch is a wonderful place for info and comfort. I have no issues, take no meds and my permanent illeo and me get along well together. Thank you jpouch.
Hi Sandyk.
John from Australia.
I have had my pouch for over 31years so far with not to many problems.
I was one of the first pouch ops done in Australia and was most fortunate that the surgeon that operated on me had worked with Sir Allan Parkes who had done the first sucessfull ones in London.
I also had some very good Stoma nurses who explained to me how to make a sucess of a pouch and I took their advice and it worked ,eg When you feel the need to go try and hang on a few minutes longer first off each time so the pouch will stretch a bit and the area around the pouch gets used to being used again.
I also drink lots of water ,about 2 litres a day to stop kidney stones and so far so good.
With the benefit of hindsight there is no way that I could have lived the life I have If I had put up with chronic U/c for years.
I have about 3-6 bms a day with sometimes 1 at night but this is dependant on what I eat so I keep a food diary on my fridge.
I go surfing all day on summer with no problems and drink at least 3 litres of water at the beach with no problems.
I have taken very little medication over the years and have a blood test done every couple of years and so far so good but I try very hards to look after myself.
As one of the pioneer surgeons of pouch surgery said something like ,, A pouch procedure can work very well on well motivated patients,,and I think he was right.
Hope you find this info usefull.
Best Regards from Australia.
John.
ps I travel a fair bit and you can soon work out where the toilets are.

I had a j pouch (in 2 stages) formed 25 yers ago. Like mot people it took a while to adjust but I have led a busy and full life ever since! I take immodium daily and codeine phosphate at night to absorb water and reduce bowel movements. I eat and drink normally and if I have a not so good day I adjust my diet accordingly.   

12 years ago I had problems with fistulas forming firstly to the vaginal wall then to the buttock, presenting with a surface abscess. Major surgery and a complete revamp of my pouch (yes with a temporary ileostomy again) did the trick. I was re-joined 2 months later and have never looked back. 

We 'pouchees' have a lot to cope with but better than the alternative and I am eternally grateful for my j pouch.

My advice to anyone is do not give up and stay positive.

My husband has a very successful jpouch for 10 years.  He had 1 blockage 3yrs post take down, due to scar tissue.  But now, he eats whatever he wants (except for gassy/spicy foods).  He never had pouchitis or any incontinence/leakage.  He has about 6 BMs per day and 1 BM at night (which can be reduced if he takes immodium).  His only complaint is the occasional butt burn.   He drinks tons of water and takes probiotics daily.

My 15 yr old son just had step 2 of 3 and is doing well.  His take down should be in June.  We pray his pouch is as successful as his dad's.

Hi, everyone.  I found this topic through a Google search for J-Pouch surgery success stories.  I'm having the first stage of my surgery next week, and I'm starting to get nervous.  Makes me feel a little better to read the success stories here.  Fingers crossed that I'll have one of my own to share down the line. 

For those of you who said you have 2-3 BMs per day and with very successful pouches, may I ask which hospital performed your surgery? May I also ask how much you actually eat each day? For example, 3 full meals? I'd like to gain some weight back but I'm stuck at a steady 152 lbs (5'10 male) but if I eat more my frequency becomes an issue. Thank you. 

Had takedown in August and have 3-4 bm's per day.  None in the evening.  I always eat 3 meals a day, and a few snacks in between.  I also use Benefiber at breakfast, Peptobismol at dinner an 2 Immodium at bedtime.  And I keep up on fluids.  For a while I stayed away from coffee but find I can tolerate it more now.  Not sure yet that you could call it success.  I'll see what happens down the line.  So far, very happy!  

 

J moons posted:

For those of you who said you have 2-3 BMs per day and with very successful pouches, may I ask which hospital performed your surgery? May I also ask how much you actually eat each day? For example, 3 full meals? I'd like to gain some weight back but I'm stuck at a steady 152 lbs (5'10 male) but if I eat more my frequency becomes an issue. Thank you. 

I'm same way, I am 5'8 147. I wish I could gain 10 pounds but no luck. I am on my 2nd jpouch so maybe its just an absorption issue for me since losing so much small intestine??

It's been over 20 years since my surgeries. I don't regret them for one minute. Suffering with Bloody U.C. for 10 years was a time of my life I wish to forget. I had a little bit of trouble adjusting to my J-Pouch, but for the most part, it has been without problems. I eat whatever I want, but do stay away from fried foods and spicy hot food. I had only one bout with Pouchitis, and that was just last year. I  never took any meds  for bowel control, but since the Pouchitis, I am on Sulfasalazine 4,000mg daily. I rarely ever have seepage, but when I do, I get butt burn. Have never had an "accident", and can hold it for hours if needed. When questioned about my U.C. experience, I always say that the Cleveland Clinic saved my life!

I have had a j pouche for two years now and with minimal problems. I had to be hospitalised after a year because of a blockage. I ate beans too fast. Apart from that it has been mainly plain sailing for me. Earlier on in the piece I had a few urinary tract infections which have largely cleared up now.  I thank God that I am good and can live a relatively normal life now.  Work holidays grandchildren family friends. Life is great and I really appreciate Medical Science and how I have been helped.   Life is full of risks and unknowns but sometimes we just have to take a risk and go for it. 

It's been 18 years for me with only a few issues.  I sometimes have watery leaks at night but nothing terrible.

 

I have a few foods I need to eat in moderation like nuts, raw apples and mushrooms.

 

I can't eat citrus fruit OR drink juice as I get serious fire butt.

 

I have no problems with spicy food.

That gives me courage Annikki to hear that you've been on the J-pouche road for 18 years. (It's two for me). I've discovered that dairy products can be a problem to me. I can have them but I have to put up with the side effects.  Yes raw apples and nuts too as well as moderating citrus fruit.  Also I find it difficult in the hot weather and so I have to drink plenty of water and have the occasional drink of Electrolytes (  hydralite) 

Apart from that I'm fine. Everything in moderation helps me to keep healthy. 

Cheers

I have had mine since 1985 so I am over the 30 year mark.  I just turned 50 a few months back and have had a great run so far with very few issues. In general I have 3-6 BM per day and really have had few issues at night. A recent issue with pouchitis has my attention but am hopeful I can move past this as well and look forward to another 30. I try and focus on looking out the front window and not the rear view mirror.

My story is similar. I had my j pouch formed in 1991 and I am now nearly 65 years old. I do recall it was tough at first getting everything to work properly and I still have several BM's a day and sometimes at night but you do adapt to this. I take meds regularly to absorb water and thicken bowel contents but these have been fine. Hydration is important so I make sure I drink at least 2 litres of water a day but this does impact the bladder. Also when my pouch is full it impacts pressure on my bladder but this is manageable. I am pleased with my pouch as an alternative to a permanent ileostomy.

I did have 2 fistula's form, some 10 years post surgery, one minor to the vagina and a year later another more complex one which presented with an abscess in my buttock. I was given 2 options to fix this, pouch removal and ileostomy formation which was simpler surgery or removal and complete revamp of my pouch and another 2 stage procedure to fix which was big surgery again. I was attached to my pouch and chose the latter and have never looked back. I will not pretend all is easy living with my pouch and some adjustments have to be made (mainly around noise on going to the bathroom and a more distinctive odour and an even increased frequency of BM's if eating certain food stuffs) but  these can be descretely managed (using public facilities when someone is using the hand dryer and carrying a perfume spray and managing diet when necessary). Oh by the way sudacreme is great at limiting soreness when required. I do feel I have a good quality of life. Good luck and keep positive.

Barbara from UK

Hello everyone, its been a long time posting on this site. Its true that once most of the problems are gone the less you return to this site.

I received my pouch the year I turned 50 and I'm now 70. After the adjusting period, which can be very trying, life does get very manageable and easy. When I was sick I went from 240 pounds to 140 in a very short time; right now I'm trying to shed 65 pounds to get back to 200, so life does almost back to normal. I eat almost everything, I drink wine and scotch, I take only BP medication, the only pouch problems in 20 years were self inflicted blockages brought on by popcorn cheese combinations and nuts. Right now I do have hernia problems from gaining all that weight and the scar tissue breaking down but as soon as I lose another  30 pounds they are going to insert a mesh down the whole belly.

I just wanted to stop by this site and say life does get a lot better after all the pain and adjusting times we all have to go through. My wife and I are now retired and RV live all winter in Florida and up north with the kids all summer. We hit the gym 3 days a week and walk 2/3 miles on our off days. The only must that I have to do everyday to keep the pouch happy is take metamucil faithfully, I still have 5 / 7 bowel movements a day but you become unaware of it. 

Live life, have fun, love everyone, hate takes to much energy.

Bob B.

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sandyk posted:
Hey Everyone,

I am new to this site, and just had my closure (take down) surgery a little over two weeks ago. After perusing this site, I have noticed that most stories here are focused on the various complications with the jpouch.

In order to balance out what I have read so far, I was hoping that, if any of you out there would be so inclined, perhaps you could recount some success stories? I would LOVE to hear from people who have had few problems with the pouch. I appreciate that the first six months or so are always a bit tough while the new pouch adjusts to its job, but are there any people out there who have sailed through this procedure? I am guessing if there are people who have, they may not feel the need to join a support group site,.. but perhaps there are some out there. One can hope.

Thank you!!

I had my surgery in 2001 in Rochester, MN Mayo.  At the time I was 22 years old and living with UC, and after 3 years my GI found cancerous polyps.  I had been on EVERY UC meds and had been on the highest amount of steroids possible for 1 year, this sunk my immune system and did nothing for my UC.  I was bleeding profusely and my hemoglobin was rarely above 8 and received 2 different transfusions.  Needless to say my life  was hell

The surgery itself as you know was scary.  I spent almost a month in the hospital because I came down with a fever.  When I left the hospital I was 22 years old and a colostomy bag.  I spent the next 3 months trying to adjust to life and eventually found the bag to be apart of me.  When I went back to Mayo for my letdown surgery, things went better.  The pain and recovery seemed to be a snap.  Weirdly though i spent a week in tears because I 'missed' my colostomy bag.  The doctors said it was the same loss that an amputee has.  

Since my surgery 16 years ago, I spent many healthy years.  I had 2 successful pregnancies.  And am able to enjoy a normal life, eating and drinking and living life to the fullest.  Back in 2012, i developed a hernia on my scar. And than life changed again.  I spent the next 4 years in pain due to scar tissue (also related to C-sections).  I was relived of the pain on a trip to Mayo last year.  It was pretty much my last home.  I had a 10 minute procedure and 4 years of chronic abdominal pain was gone! However while I was there I was there they ran the normal test (scans, scopes, etc.) and discovered a lot was going on.  I had previous battles with pouchitis, which were always treated with antibiotics, however after numerous upper scopes, and lower scopes, ct scans etc. The doctor now has diagnosed me with Crones.  

I am living now with a j-pouch and crohns.  I am now 39 and trying to overcome.  Do I regret the surgery....NO, it saved my life.  My scars make me who I am and I will continue to make progress because I know that if I can make it through that surgery, nothing can stop me!!!

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