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Rick
 Rick
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September 1, 2020 8:17 pm  

Does anyone have info on what life is like after a failed jpouch has to be reversed.  I understand you lose about 8 inches of small intestine, how does this effect eating, and general function?

thanks


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Lynne
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September 1, 2020 11:35 pm  

Hi Rick.  I had an "in use" jpouch for 30 years.  Last November after a few years of bad perianal complications/fistulas from the jpouch, I got an end ileostomy.  My jpouch is still there but in retirement, and as you say, I'm not benefiting from that tissue in terms of nutrient absorption.  I think in total I lost about 20 inches of small intestine (the jpouch I was told is about 12 itself) but with the remaining 90% of SI (since the whole thing is 22ft), I have no issues.  My blood work is normal and I'm the healthiest I've been in probably 15 years.  I do try to eat well and take some supplements. For now, I don't plan to have the jpouch removed with a second surgery.  I do have, every day or two, about 2 tbsps of mucus, normal shedding from the jpouch cells.  I wear a pad and a tuck and it's not really an issue.  Happy to answer any other specific questions. 


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LK
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September 2, 2020 3:46 am  

Rick...don't mind my asking... are you having it reversed and what, and  an ostomy installed???  

A few more details would be helpful to get the right person replying. 

Linda


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Rick
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September 2, 2020 9:43 am  

LK,

trying to decide which direction to go.  Had colon removed in April, living with ostomy bag, and next surgery is to remove rectum.  Surgeon told me If I want jpouch they would prepare for that, or close everything up and live with bag permanently. I guess it’s hit or miss with jpouch, it’s a lot to go threw for something that might work.  Wondered if it failed would I be worse off To put everything back to pouch?


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Lance
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September 3, 2020 8:28 am  

Lynne,

I couldn’t believe when I saw your post in response to Rick.   I am a 51 year old male and have had a jpouch for 27 years. I have had complications over the years with abbesses, fistulus, pouch it’s. I am currently on the hospital with a iliosomy. 
I am reconsidering not reconnecting my jpouch.  This trip to the hospital almost took my life.  I haven’t eaten in six days still on IV fluids until iliostomy bag starts working.  I am concerned about the quality of life without a jpouch vs iliostomy. I’m afraid I will still have issues if I leave my jpouch inside i could still get An absess or have other issues. I just don’t think I have anymore strength or fortitude to undergo further surgeries. How were you able to come to your decision? 


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john68
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September 3, 2020 9:08 am  

Hi All, and welcome lance. I really feel for any one having to make these choices. It’s something that wasn’t an option for me. So many people live very well with their j pouch and the other side of the coin is the problems. Maybe the overall general health and other digestive problems make it not a success. Best wishes for those decisions and discussion helps 👍

ileostomy 31st August 1994 for Crohns


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LK
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September 5, 2020 1:36 pm  

Rick AND Lance...

Welcome to VO Lance...it can take time here & there to get replies, but they do come in. In reply to you both....I have had 50 plus (from age 10) years of gut issues with IBD & in 1996 had a total colectomy ileorectal anastomosis  with a J Pouch. It worked fine for "only" a few years, 3 max, and that was after troubles subsided. But then it was like I never had it and was  back to square one. Talk about a confusing love hate relationship with the J-Pouch.

Based on what I know now, never would I have had it in the 1st place.  If it could go wrong, it went wrong... pouchitis, massive  watery bowel movements all day & nights too most times. Burning butt all the time, I resorted to using Penetin baby diaper cream from a tin. I was constantly at the hospital for IV fluids, dehydration.  I began hating my J pouch!! Weight loss &  gain like a rollercoaster. Skipping details not needed, in 2009 I was finally given an Ileostomy. It was the BEST  move of my life!  With the J Pouch my quality of life SUCKED!! In turn, so did my families. I had become so badly malnourished I spent a year in the hospital & about 7 or 8 operations later they installed my stoma. Talk about Day & Night! Looking back, I would never have had the J pouch to begin with but they gave it such hope. I called it false advertising! lol! I knew no one who had this & I needed a chance to change things, so I agreed to the J pouch surgery. Now, we have the internet and people talk about these things! Honestly, from my heart, I would advise strongly about any reconnecting of anything and go straight for the Ileostomy. I am a Mom of 2 + their spouses, with 6 grands now, a widow of 11 yrs, my man passed from pancreatic cancer 5 months after my stoma, my biggest supporter in all things,  other then the huge loss of my hubby,  my life since the ostomy is so controllable and pleasant.

Every surgery for everyone brings on scar tissue often making each surgery longer due to tough binding scar tissue. I have short short gut (yes, 2ce said) syndrome due to all the surgery.  Now there's not enough gut left for fixing what needs fixing, so I live with the issues & pain.  Other then dealing with chronic anemia and malnutrition I manage very well. I can plan outings, babysitting grands, I garden, walk miles in a week, groom my 2 little dogs &  keep my own home in & out. I repair my own appliances, TQ you tube! I am probably the healthiest I have ever been in many years and loving life!! I do so much more now then before the ostomy. 

Maybe ask.. how do you want to live the rest of your life? Doctors apts., rushing into washrooms, avoiding sports, camping, outings with friends & family...I have so much going on now, I love it! I can eat pretty much anything I enjoy now too. Depending on your  age...is your family held back because of your guts? Mine sure was and I missed too many events in their lives. This does not just affect you, your decision will affect those around you. I hope this helps. Feel free to ask more questions. 

 

 

Linda


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JTVT
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September 5, 2020 5:31 pm  
Posted by: @rick

Does anyone have info on what life is like after a failed jpouch has to be reversed.  I understand you lose about 8 inches of small intestine, how does this effect eating, and general function?

thanks

Hi Rick,

I’ve read your other posts on this topic and seems we’re in a similar situation. Severe UC requiring subtotal colectomy and temporary ileo, now deciding between jpouch, completion proctectomy with permanent ileo, or doing nothing. In my case doing nothing is not an option as I’m currently flaring in my rectum. I made it about 7 months post-op and probably 5 off steroids before symptoms returned. You asked in another post why your surgeon was recommending another surgery and one reason is that your rectum may still be  diseased and you can have a UC flare requiring medication, also risk of cancer in the retained stump though this seems to be lower than was once thought. Diversion proctitis appears to be pretty common too—rectal inflammation not related to IBD due to loss of fecal stream. Unlike in Crohn’s, colectomy is curative for UC but not if you still have the rectal stump. 

I think the indication for the colectomy in the first place is important to keep in mind when considering possible outcomes and the advice given here. Jpouch creation after colectomy for UC is very common and there are tons of people with great outcomes. Having said that it comes with risks like sexual dysfunction, infertility in women (don’t get me started on the seeming indifference to sexual dysfunction in females) and urinary issues. Perianal disease, poor wound healing, etc is more likely in Crohn’s so I wouldn’t necessarily compare IPAA in these groups. Also jpouch for functional GI issues is probably not a fair comparison either. 

Anyway, sorry for the long post. It is a tough decision and can’t say I’m going into it without trepidation but I think that’s pretty normal. Good luck with your decision.


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Rick
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September 5, 2020 8:23 pm  

Thanks for responding!

I am wondering if my history of anal fissure and hemmeroids will be taken into consideration?

I wonder if this affects the success of a J pouch? 


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JTVT
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September 5, 2020 9:55 pm  

@rick

I’m sure the health of your anal tissue will be considered though I can’t imagine it would be a barrier unless it already impacts your continence now. I don’t know  though as i haven’t had my planning appt yet. Maybe someone on here whose had a pouch can enlighten us on how they assess sphincter health. I was worried about my very inflamed rectum complicating the procedure but my CR surgeon said it didn’t matter as all the inflamed mucosa is dissected out. Maybe they can do a little hemorrhoidectomy for you while they’re in there. Clean things up a bit! 


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LK
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September 6, 2020 12:16 am  

Yes, there is a test to evaluate rectal muscle strength and evaluate its ability to have control over... as I later discovered, the pressure from rather large sudden watery bowel movements. 

Linda


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ChrisandBagpus
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September 6, 2020 6:46 am  

I can't say much about the difficult decision and pro and cons of this particular surgery.

I had a direct to colostomy as a result of rectal cancer. The surgical decision was a reversal would not of worked well after the event. So far the rectal stump remains and touch wood is not causing any real problems. As far as the other problems of digestion with bloating and very painful wind, hemorrhoid's, tenesmus these were and have never been taken in to consideration or any test for the above. as for the affect on the nervous and immune system very little appears to be known or imparted

How I see it a surgeon knows and recommends surgery, a oncologist chemotherapy, a gastrologist medication, they have MDT meetings but the patient only receives the recommendation.

All surgery has pros and cons without a lot of independent research of your own I would suggest its very difficult to make a valid decision and it will be you any only you who will live with It so do continue asking and researching then I'm sure at the right time you can make the right decision if you have the opportunity to take the time. If you get greater input from the medical team then you are very lucky but this is less likely in the current situation.

Best Wishes

Chris

Colostomy Jan 2020


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Lynne
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September 17, 2020 2:53 pm  

@lance Sorry I'm late in responding, for some reason didn't get a notification there was activity on the thread.  Anyway, hopefully you are home now and doing better but I'm guessing still faced with the decision.  Lots of good counsel from others here.  In terms of how I decided, I wasn't sure which decision you were referring to - original jpouch (I was 22, preferred not to have a bag at that age and doctors said it would be a cure so I took that route); ultimate ileostomy 30 yrs later (perianal situation became untenable); keeping the jpouch to avoid a second surgery (if I need to have it I will but everything cleared up with the ileostomy, although I am doing a lot to keep myself healthy). I'm happy to answer any specific questions or even open to a phone call if helpful given our situations seem rather similar.  Sending my best. 


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