Pouch Removal

Have any of your doctors been able to tell you what's wrong with your pouch? The most important reason to know that is to be able to have confidence that pouch removal will fix it.

Scott.
I have had one other look and it's normal.
I was told I am one of the 20 percent that it will not work for.
They cannot see why it will not work right
The two major things are urges to go.
And straining when I do go   Straining hard too.  But i will herniate myself  if I keep the it up. 
I do have times when it comes right out.  I don't know why.
When I do have urges hardly anything comes out.
Sometimes an urge will hit the jackpot and alot will come out  but I have to try with every... Almost and if I am able to.... Try to go everytime.
My surgeon that did the original has scoped me twice and found nothing wrong.
One other major thing is my weight loss. 
My wife caught me in a picture just by chance yesterday   and I really saw myself.  I look terrible.  Thin and unhealthy.
I do feel if I let it go much longer be  will not survive.  I am being serious.  I am losing strength. 
No... She says no guarantees I will gain with an illeo .  I asked.  And of course she will not give guarantees.
I have ordered some benecalorie.  And am gonna do some exercises while taking it.  I have two months to put some on.  I am pretty well resigned to it.  I hate to say that. 
I don't know if it would do any good to leave it in and divert it for awhile.  I don't think she would do that.
Richard.
Edit.
I was told I had uc for years.  Now I am being told it may have been chron's all along.  There is a test for it but I would have to swallow something that may get stuck in a tight spot I have which would cause surgery anyway.
She did say that that tight spot (inflamed) may be my problem and has seen it on scans and in the scope.  The spot is by my old stoma site and I have had problem with it since it was created. 
She did say if she thinks that is the problem she will snip that part out and leave my pouch.  But she also said she will not do the surgery if I just do it for exploring.
That the illeo will have to be the option if nothing is found.

Two thoughts

get another opinion and get it from a different hospital system. There is group think in hospitals

 

ask doc if problem might be pelvic floor disfunction, which can be fixed w PT.

 

good luck!  Jh

I agree that pelvic floor dysfunction is a good possibility. Another one, less likely IMO, is pouch prolapse. Neither of these would be diagnosable by pouchoscopy. While an ileostomy would "fix" either one, it wouldn't be an appropriate fist choice for either one.

 

Without a diagnosis it's rare to get the best treatment.

Mysticobra,

The last step of my JPouch construction due to a bd bout of UC in 2012 was Aug 2014. After 7 months of dysfunction, losing 40 lbs (225lbs to 185lbs) and many sleepless nights, I could not take it anymore. I had the surgeon divert me without removing the pouch. Within 3 months I was back to my normal weight and looked healthy again. Looking back at pictures I was unwell but trying my best to fight through things with the hope things would get better. I ended up having a leak which was causing many issues. Can you not ask your surgeon to just divert you without taking it out? This will let you get back on your feet and give you some time. Perhaps you can seek a 2nd opinion once you feel better again. I'm 6 months out from being diverted and now discussing options of taking the old pouch out and re-doing it for one more shot...Just a thought from someone who also struggled.

DB

another problem i had/still have, which sounds similar to your difficulty in evacuating, was bacterial overgrowth in small intestine.  it bloats up and causes dreadful stomach aches.  if you don't have those problems, then maybe the lowFODMAP diet is not for you.  but if you do, the overgrowth might be the cause of feeling that the pouch is full, but it isn't.  and if so, check out the lowFODMAP elimination diet.  just google it and will take you to monash u. in australia.  just a thought,  jlh

I don't have any bloating.
I get what I feel are partial blockages that last days.
Painful. 
I feel a second opinion would just come up empty handed.
My wife sees my deterioration.  More than I do. She will get mad if I extend it trying to get another's opinion.

Sounds exactly like my symptoms and after years of agony it turned out to be bacterial overgrowth. A 15% of population  has it!  Can you see a dietitian who can help you with an elimination diet?  It changed my life. 

 

ok, so you need to balance your family life, as that I'd so very important. It also sounds like you are desperate, as is your wife wishing such, to get better and I think that is what a 2nd opinion could lead you to--whether the pouch stays or goes. Just my opinion.   Be well

I made a 2 oz. syrenge into an ennima with a top from a hot water bottle tube so I could insert it. I put water in and then pull waste out. Been doing this for 15 years caus of all the pushing ect. It works well.

hi again,

if you are at all interested in trying diet to resolve your problems please go to a dietitian who knows about lowFODMAP.  even the top doc surgeon in nyc did not know about it and it is unlikely that most surgeons do as that is not their speciality.  it is a newer diet, tough to figure out on one's own, but so very helpful. lots of meat/fish and starches.  i gained weight on it!  our symptoms are so similar, although i also have nasty pouchitis.

 

also, i agree with the enema technique, especially if you have eaten lots of fiber--it breaks it up.  simple way is to get a regular enema bottle, empty it, remove the plastic liner in the cap, and use warm tap water.  often i do this prior to going out.  i reuse the bottle.  

 

good luck!

go see Dr Shen before you go through the huge undertaking of pouch removal. I would get a 2nd opinion from the best before removing. It could be just something simple, worth it to know and if not then you will never second guess

I cannot afford to go see an out of state Dr.  Or even a dietician.  Insurance won't cover the dietician.  I live in Texas. 
I have an experienced surgeon  and she has scoped me twice up into my intestine.  Saw nothing.  Just the small area where the stoma was slightly inflamed. 
I also had one other surgeon scope me and saw no problem.  Two very experienced surgeons. 
I am living on my paycheck and savings as my wife is disabled and fighting SS.  I cannot afford  to fly anywhere.  And as for getting an appointment.  He is probably booked till forever and would need more than one appointment.  I don't have the time. 
I am trying other diets.  Heavy calorie diets. 
If I could put some muscle mass back on I can put the surgery off.  But it's not likely.  That is what I lost.  I had no fat or very little to loose so when the fat was gone my muscle mass took the brunt of it.  I have been thin all my life.
I didn't get much sleep last night.  Had about 4 accidents.
Two years out and it's still happening. 
I will not go all day sometimes like yesterday and have accidents all night.  I can't take it anymore.  Two years of dealing with this is enough.  It's not gonna work and getting more opinions after I already got some will just prolong it.
I know I asked the question and I have had some good suggestions.  I appreciate it.
Richard.

I agree. Everyone does not have the ability or resources to travel great distances to get the opinions of the top doctors. Even those that do may just be too weary of the prospect of more attempts with an uncertain outcome.

 

 

Sometimes a perfectly good pouch just does not work. There are factors you cannot see on a scope, but how much searching do you want to do for something that may not be fixable? The answer to that varies from person to person. If it were me, I'd be inclined to allow my surgeon to explore and fix anything he might see, otherwise just opt for the ostomy. Often times, they just don't know what they are dealing with until they are looking inside. As long as you have a surgeon with experience in that area, you have a chance for a good outcome.

 

This reminds me of when I go shopping for something specific and I actually hope I don't find it when I see how crowded the store is and how long the check out lines are. Life is too short to spend it waiting for something.

 

Jan

 

 

Jan.
That is what she said.
She is willing to go in and fix anything that may be wrong but will not do the surgery unless I agree that if she finds nothing wrong I will put the Osteomy aboard.  Which is reasonable.
She just does not want to do exploratory surgery to find nothing and leave the Pouch and no Osteomy.
If she finds something wrong she will fix it and leave the Pouch.
I will know what I have when I wake.
I know deep down this is the way I have to go.
Like you said you can only see so much with a scope.  It may be out of the scopes reach... Realm.... Capabilities.
I can only hope for the best.
I have a great surgeon.  I trust her completely.  I have to.
All  that has happened was none of her fault.  It's just what happened.
Thank you Jan.  You just made up my mind.
Richard.

Good luck to you Richard. Often I think that the biggest hurdle is just making a decision. This is especially true with an irreversible decision. But, once you have laid out all the pros and cons and come to a decision, there is a calm that can replace the angst. There are no guarantees. Stuff happens. We just make do the best we can and move on. No point in shaking your fist at God.

 

I am glad you have perfect faith in your surgeon. This sort of trust is very beneficial in your healing and will help smooth the inevitable bumps in the process. Fingers crossed that there is something to find and fix in there, but either way, it should be a positive thing for you (and your wife too!). 

 

One pitfall that is easy to stumble into is beating yourself up for not "giving in" to an ostomy sooner, saving you and your family all this trauma. But, you really should not do that because if the time was not right, you would forever be second guessing yourself and wishing you waited just a little longer. But, this is not giving in. It is accepting reality, and that reality is that ileostomy is not the end of the world. Not something to wish for, but not something to dread either.

 

Again, best wishes! And, please continue to come here regardless of what is found, as I think stories such as yours are helpful to others with similar journeys.

 

Jan

Thank you Jan.
I think as of now I have come to the right decision.
After last night it just proves I need to move on.
As my wife just said I tried my best and she is happy with my decision.  My kids will be too.  They don't say anything to me but they see me deteriorate in front of their eyes and I cannot do this to them anymore.
It is being selfish.  It really is.
Thank you for your thoughts Jan.  I do appreciate them and they have helped!
Richard.

hi 

 

I am in a similar boat. Pouch looks healthy, but according to GI the anal canal is strictured from previous surgery (had pouch advancement for cuffitis also) . I have had botox done but not much better. Because the pouch doesn't empty properly, I have huge trouble with bacterial overgrowth. He thinks I would be better off with an ileostomy and I am totally scared.. 

I know where u are coming from being afraid.
The first surgery was a nightmare. 
I am hoping this one goes better.  But having the abdomen opened I  found to be super painful.
That is what scares me.
Once I have the Osteomy I will have no choice but to get used to it.  And over time I would hope I will.  Especially if my health returns.  No quarantees on that part
I wish you the best and you are definitely not alone.
Richard.
Edit.
Thanks Jan.  I don't beat myself... I am beating my pouch up for not working properly!  Lol.
Healthy or not I will always have this site bookmarked.
It has been very helpful over the past few years.

Best of luck, Richard!

Thank you Scott.
Thank you all.  And for everyone's support and advice.
Now... I have two months to put on some weight.
Need to put on a few pounds cause I know surgery will take it away.

"Need to put on a few pounds cause I know surgery will take it away."

 

Don't be so sure about that. Many have been surprised at how quickly things improved with the ostomy. I would happily send you 30 pounds I have around my middle doing ME no good at all. But, alas, not possible...

 

Jan

I have been offered many pounds!
I wish it were that easy.  I bet you do too.
I do hope you are right.  I could use at least 35 pounds minimum.

And, if only you could tell those 35 pounds where to go! Why do our bodies have a built-in blueprint of where our fat and muscle should go? (Well, I DO know why. I just don't like it...).

 

Jan

Richard, I love Jan's description regarding acceptance and moving on. She described my experience exactly. There is a lot of thought that goes into an irreversible surgery but once you make it for all the right reasons for YOU, there is absolutely a calm. And total confidence in your surgeon is even better......

Before my perm ileo surgery, I asked my surgeon if I can expect a similar outcome to my first surgery when my colon was removed and I was given an end ileo. He said possibly a little more liquidy output, but that's it. I must have asked, "Are you SURE?" a million times because I knew I needed to be ok with his answer. I got lucky in that my output is very easy to manage and only liquidy after I drink a lot of water. You may want to ask your surgeon about managing your rectum removal and "closing up shop" back there and the plan for pain management. Finally, you may want to ask about what your surgeon may find when she's in there i.e. adhesions. It's just good to have this conversation beforehand. My pouch had adhered to my bladder so the surgery took longer than expected and I was on an antibiotic because of it. If yours is being done laparoscopically and adhesions are discovered during surgery (an x-ray can't detect them before surgery   then she may have to switch to an open surgery. It's just good to know this stuff ahead of time so there are no surprises. Oh, also, I put on NO weight with my temp loop ileo five years ago. I did put some on right after this perm end ileo in January. Not sure if this is just chance or if others have had the same experience.

Winter Wish,

 

It is OK to be scared, but not so much that you are paralyzed and unable to move forward. I probably would do everything within my reach to avoid further surgery, but if I was back to being a bowel cripple as I was before my j-pouch, I definitely would consider an ileostomy. It scares me too, especially since I have never had one!

 

Jan

Thanks Jan. Has anyone had a success story with anal stricture? My surgeon has only used botox, when others talk about dilation, it that like a balloon dilation? 

 

Linda

 

Always believe that something wonderful is going to happen 

Botox is for treating fissures. I have not heard of it for anal stricture. Dilations can be manual (with a finger), or be balloon. Another option if dilation does not work is injection with cortisone and or antibiotics. There is also stricturoplasty or pouch advancement surgeries.

 

Jan

 

hi

i too want to voice my support for your decision and think that jan wrote an excellent and emphathetic explanation, to which i cannot add.  when i first made suggestions i had no idea of your situation.  all of our conditions must be taken in context of how we live and our economic circumstances.  this is an unfortunate reality of the american medical-industrial complex.  if there is any way i can help, please contact me.  one thing, about which i previously replied, is the stomach aches, which i too have.  diet can make a big difference.  usually surgeons are not very well versed about diet, but maybe your PCP could help.  yes, dietitians can be $$$.  it is possible to figure out the lowFOPMAP diet on your own--i did--and i am willing to give you some help.  as bacterial overgrowth is in the small intestine, i am concerned that getting an ileo or k-pouch will not eliminate the problem.  the diet is for 6-8 weeks, and you will know within the first week if it helps.  after the elimination part you slowly add back foods to determine what triggers the over growth. i'm still trying to figure that part out.  good luck, and keep posting as you have many followers that are concerned about your physical and mental well being.  jlh