I don't understand what a pocket of dilated loops at the ostomy site have to do with a revised j pouch? Is he talking resection maybe?

So sorry you are going through this.  Hopefully someone will reply with experience going back to ostomy.  I've seen others post on here saying, "it is better than all the issues with the pouch."  I've had tons of surgeries - hysterectomy/oophorectomy, adhesions, endometriosis, etc. - and complications with pouch. I've had it for 30 years and I've stuck with it, but I have FAP - which from what I am seeing on these boards, makes my pouch less prone to pouchitis - although I have had that too.  I don't know your age or # of surgeries, but I would wait to make the decision to go back to ileostomy if you can.  Right now, you are at the bottom - and your feelings can overwhelm you and sometimes those decisions, when looked back upon, were made out of emotion and not rational facts.  (Have done this myself - not trying to judge).  If you decide to go back to the ileostomy - at least talk to CC people by phone and be sure you are jumping the gun.  There were times when I thought, "done - going back to bag" - and as of now , I'm glad I didn't. But, I do understand you can only take so much.  I hope you feel better soon - the exhaustion is awful and it drags you down mentally too - dealing with all this can be depressing and I had to get on anti depressants about 10 years into it - has not been a magic cure, but I think it takes the edge off.  I also have klonopin and use it as needed to sleep.  Meditation helps, but not enough.  So sorry you are going through all this suffering.  KNow people our here care.

Sounds to me like you have adhesions at the ostomy site that are causing obstructive signs and symptoms. I don't know if you were told you needed pouch revision, but this would require release of adhesions at that site. 

Needle-knive surgey performed by Dr. Shen usually is about dealing with sinus tracts and pockets that arise from suture areas within the pouch. This would be an issue that is separate from the ileostomy site issue.

My suggestion is that you ask a lot of questions and have the doctor write the specifics down for you. It is easy to become overwhelmed by information in a stressful situation.

Jan

Thank you for your answers, they're helpful.

My internist has thought I've had adhesions for years. When I had my colon removed the surgeon told me I had a lot of adhesions.

I forgot to mention I've lost 35 lbs. in eight months. 

Dr. Shen thinks I will need jpouch revision surgery. 

Nancy

Nancy - so sorry about the weight loss.  You are in the thick of it and it's so hard.  We are out here and if you ever need to vent, you know people on this site understand how difficult it is to deal with set backs and seemingly non ending issues with our GIs.  I hope you will get a good result no matter what you and your surgeon choose to do and then you will heal and feel much better. 

 Thanks, Angie

It's nice to know others understand. I'll keep you posted.

Nancy

Nancy, you are welcome to 30 of my pounds. I've gained back half the weight I lost (purposely), and would love to donate!

Jan

Yes - I will donate between 5 and 10 - all my pants are too tight since holidays.  Oh, if only it were that easy!

what they test in your blood for iron is ferritin, hemoglobin is red bloodcell count. Ferritin test is separate from normal cbc test. I have anemia with iron deficiency. 

That's funny about the weight! I gained some when I was on prednisone so I needed to lose some but can't lose much more.

Thanks for the info. about the cbc and ferritin. My Dr. said he was going to check my iron to see if I'm anemic since I'm bleeding on and off, but he didn't. I'll email him.

Hang in there, Nancy.  Do get the iron checked - sister went thru this and had to get infusions, etc. - until they figured out a fix.  It helped her get through it and she has kids, too.  She works with a hemotologist (sp?) now and rarely has to have infusions - maybe once a year max.  It scared the daylights out of her when no one could figure it out.  CC finally did...but took her quite a bit of time to get the blood issues all worked out. Now she is playing tennis, doing yoga, etc. - so there is hope!!  It took her a lot of determination to get the answers - too many doctors to count and just a really tough couple of years after having had many good years w/ her pouch.  Her kids motivated her to get better.  Don't mean to brag, but I'm so proud of my little sister (who is 47 years old!)  Still my baby sister to me.  Nancy - please take care of yourself!! Don't give up!

Thanks, Angie

I know what you mean about sisters. Glad your sister is better. My oldest sister went with me to CC. I don't know if I would have gone without her.

I had the blood work to check iron and ferritin and it was ok. I'm still very fatigued, so I'm puzzled. I'm going to a new gastro. Dr. in a week so I'll see what he says.

There are umpteen causes of fatigue, with anemia being only one. Hopefully, you've had your thyroid checked, along with B-12. It could even be something as simple as not getting enough deep REM sleep. Just having this prolonged period of inflammation can cause signifigant fatigue. Blood tests don't tell the whole story. A number of members here had ongoing inflammation around the pouch that was undetectable on imaging, but there was a great deal of damage found after exploratory surgery.

Jan

Hoping you get answers to your fatigue and also that you get an answer that is an easy fix.  The hardest part sometimes is the worry and guessing games and not knowing.  My father, my sister, and I have all gone through times of terrible fatigue - yes - as in, can't walk the dog....and they have been for a variety of reasons.  It's very frightening....but we have always gotten through it and while I won't say I am bouncing with energy anymore, I also know that is very different from the feeling of not being able to walk around the block.  May you get answers and I hope whatever you decide to do about the pouch works out and you get some relief.  I'm glad you have a sister - that helps. Mine is in Philly and I'm in Dallas - but when either of us have health issues - it's so great to have a sister to help out or just to talk to.  I really am thinking of you and hoping you get through this tough time and come out better on the other side.  Take care.

 The new gastro Dr. and surgeon I'm going to are at Northwestern hospital in Chicago. That's where I've had half my surgeries. I hope I get some answers.

I went to the gastro Dr. and he wanted me on a high fiber diet. He said lots of fruits, vegetables and nuts. His theory is it will bulk up the stool. I've never been told this before. Has anyone else? I was told the opposite at CC. They said high protein/low fiber. I like cooked vegetables but they run right through me. 

Then, I went to the surgeon. He wants me to have an MRI enterography and hydrogen breath test to see if I have sibo. I had the gastroenterography(gge) test at CC so I don't understand having an expensive MRI since they were able to get past the inlet. Has anyone else had these tests? What diagnostic tests are normally done to diagnose sibo?

SIBO is sometimes diagnosed with no tests at all, just based on symptoms.  Mine was diagnosed that way.

Nancy, 

I am no expert on j pouches or even many of the things that you are going through but I am pretty experienced at having severe fatigue and undiagnosible symptoms.

Mostly I am experienced at fighting the good fight back to a healthy and productive life.

No matter what they find or do not find, you need balanced nutrition, supplement to help your body to fight back against all of the aggression and good sleep, or naps.

I had a very bad period in 1999-2000 where I was so exhausted that I couldn't make it up the subway steps to my apt...I lived on the 3rd floor and had to climb 2 mega flights up the subway steps...I would stop, sit and cry.

I tried bee pollen, iron supplements, every vitamin, mineral, juice and magnet on the market. Chiropractics and yoga...deep breathing..Did it all to no avail. People started to accuse me of making it up. I would sleep til noon on my day off, do laundry, shop and go strait back to sleep only to wake up tired 18hrs later.

No one could find the problem, no one could give me a solution...

It took a year, a lot of cysts and a good old fashioned family doctor to tell me that everyone was treating my sysmptoms but no one had truely discovered the problem.

In my case it was totally unexpected...necrosis behind the pouch...it was causing my cysts and my fatigue...but no other more obvious symptoms. I was not even anemic.

They cleared the necrosis, reattached my pouch and poof...the exhaustion went away.

All I can tell you is to not give up until they find what is truely wrong and fix it before making any rash decisions.

Write things down, have them put it all on paper and make lists of questions that you wish to ask...When you are exhausted your brain goes fuzzy too...

Hang in there and good luck with the tests

Sharon

Nancy, this is completely out of the box but has anyone looked at your heart?  Don't laugh, but I was having sever exhaustion, sleeping 12-20 hours a day.  The long and short of it was I was having mitral valve issues.  Are you feeling short of breath?  But just to rule it out, I'd have it looked at.  Can't hurt.  Feel better.

Thanks for the info. Sharon

It's too bad the Drs. take so long figuring out what's wrong. In both of our cases. I'm still fatigued but know I'm not getting enough sleep. Still losing weight-40 lbs. now. I'm trying to build up my strength by taking my dog on short walks. A neighbor has been helping to walk him-I don't know what I'd do without her help.

Jeffsmom,

i actually have an appt. at a cardiologist on Tues. I had to cancel the last appt. because I felt too lousy to go. I haven't had much shortness of breath but have had chest pain.  I'll let you know how it goes.

Nancy

I wanted to say that this journey is very tough.  No one else can understand what we go thur in a day except us who have had our colon removed.  I know in the 3 step process to remove colon have ostomy bag then the  pouch was the most difficult time of my life.  I was very bad and almost didn't make it on several occasions.  I couldn't deal with the bag, I had so much output I needed a additional bag at night that pumped into.  I had a terrible time with this.  I will try to do anything not to go back to that.  I have been on every diet plan and medication there is.  I go to yoga and muscle strengthen classes.  Some days I feel good, but the days I don't I am in pain and can't function.  I just keep trying and pray for the good days and take full advantage when I feel good.  I have a different life.  My surgeon said it would be the new normal. It's so abnormal I can't even have a relationship it's just too embarrassing.  I lost my husband almost 5 yrs ago.  I will just do my best and thankful I have this forum to express my feelings that I know no one else can truly understand.   Whatever u do It's your own personal decision.  We know what battles we want to fight for.  Good luck and God bless.     

TF,

I understand you so well but can I say something to you?

I know what it is like to be alone and living in this hell. I know what it is like to go from surgery to surgery and to believe that no one will every love me, understand me, be able to accept me etc.

Then I met my hubby who I nick-named the glow-worm. Finicky, persnickedy, knit-picker who was constantly critisizing everyone, everything, everyplace etc...Except me.

He found me beautiful (please understand that we started dating in 1999 when I just started having my cysts, was permanently exhausted, would cancel dates for emergency surgeries, nearly died and lived off of antibiotics. Had 3 minor and 1 major surgery that was a killer and  botched).

He stood by me. (still don't know why)

Love comes in the strangest shapes and sizes. 

My temp leg-bag for my k pouch exploded on my 2yr old G-son's head as he ran in to give me a hug. Hubby cleaned up the kid and floor while I died a silent death in the bathroom trying to wash of the sh-t and shame...he wouldn't let me hide.

I have soiled my best friend's new car with an exploding bag,  bled all over the bed, had hubby swimming in sh-t with leaks, stopped sex because of pouch twists etc...you name it.

Pain, surgeries (about 15 to date since 1999), exhaustion, illness etc...he is still here. Thinks that I am mount Everest, hurricain Katherian, and the statue of Liberty rolled into one. His eyes twinkle when he looks at me. 

Who'd-a-thunk that I would get a hunk? 

Love is not only blind but it is nose blind too! 

Do not give up...just get out and keep trying no matter what.

Sharon

ps. We went through hell, nearly split a few times and finally found our cruising speed...it takes time, guts, determination and a lot of love and understanding.

I agree with Sharon - it's ok if you must fight this alone - I too thought no one would put up with this - and then found a husband who does. 

For me, it was a fairly good "new normal" for many years - it's been the last 7 that have been such a struggle with the pouch and health.

I agree with people above talking bout all the other issues - I know I need to see a cardiologist, too..etc. - just to be safe - I pray nothing is wrong with it. This exhaustion is ridiculous....but, I think it's not that unusual for people to go through it at some point during their pouch careers...you just don't hear people talk about it. 

I thank all of you are sharing your struggles and triumphs - you have helped me more than you will ever know...I now know I'm not a failure - which was how I felt for so long...I am just human- and doing the best I can do - as we all are. 

I haven't posted in a while. I have continual pouchitis. Possibly sibo, but didn't have the hydrogen breath test because when I went off the Cipro for a week I got sick again. I've lost 10 more lbs. I'm now on Xifaxcin. I went to the new gastro Dr. who wasn't helpful. It was a bad experience. I'm going back to Cleveland Clinic next week. Scheduled surgery with Dr. Remzi. I'm nervous. But if going back to the ostomy bag brings me a better quality of life, it's worth it. I've been sick on and off for two years.

I went to the cardiologist who did an EKG. It looked alright. I was scheduled for more tests that I had to cancel because of the pouchitis. 

I know this is tough for all of us. The complications-pain, diarrhea, weight loss, trouble eating, fatigue, Doctors, tests, procedures, meds., etc....Sometimes it's overwhelming, but it makes us stronger than most. I've never been married and don't have children so only have a few people who are supportive and get it. 

Nancy, I actually had to have a ostomy last year in a emergency attempt to stop my pouchitis. I was so sick I could only vomit and no longer eat. 

My GI Doctor had me try Entyvio, a new bio drug that only targets the gut, and although I really don't like taking meds in general, this allowed me to keep my pouch and reconnect with min side effects. You might want to ask about it. It has totally changed my life at least for the moment, lol.

Nancy, how are you doing? I sent you a private message about docs in our area. Hoping Dr. Remzi or others at CC resolved your issue and that you are feeling stronger and perhaps gaining a little weight back. Did you have revision surgery already on your pouch? Hope you are well!

laurie

Hi Nancy, I believe we all have been were u r at sometime or other during this journey.  My surgeries for J pouch was in 2013.  I felt like I went thru hell and back often.  My hemoglobin is low and my dr advised b12. Some days I have zero energy.  I get b12 injections which do help.  Right now I'm thankful things r quite.  But, just a few months ago I was having bleeding, pain & burning.  I had a scope and pouchoscopy.  Both drs.  said no inflammation but the adhesions were very bad.  I started back with pelvic floor therapy and continue my yoga and strength class which helps so much.  I stay on fodmap diet as much as I can and it did pass again.  I was on the verge of surgery but I didn't.  The main part of my healings is my faith in Jesus and how I prayed for relief and my church family.  My sister prayer over me during my bleeding to stop in March 2016 and I haven't  bled since.  I take these good days and make the most of them and pray I don't have to reverse this surgery back.  I pray for u also.  Although we all have similar issues each one is ours and not the same.  

Nancy I wanted to add one more thing.  My dr hyoscyamine 0.125mg tab.  This medicine has been the only one that's helped me calm down my bowel.  When I have a really bad day with pain, burning this takes it's away.  Ask ur dr about it.       

I've had my j-pouch in 1998 and was pretty good for 10 years or so then pouchitis more and more almost monthly the last year. Was going to have pouch removed but decided to try something first6 months now) reduced sugar intake (most) not to feed the bad bacterias that in my mind at least (not scientific) might be causing the inflamation , taking B12 supplement (1200mcgr) daily even if my blood test always showed ok (read it could still be wrong and not show) vitamine D and use calmoseptine ointment for you know what.

For first time in quite a while, going over 3 months without pouchitis, feel a bit less tired and not  sure how to say this, head fogginess has diminished.

Hoping it will  keep on getting better, only so much pain we can take. Sure hope this can help someone but realise we are all different and wish the best to everyone.