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Jpouch (chronic Pouchitis)- thinking about getting it removed

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Posted 12/10/2012 4:09 PM (GMT 0)
Wondering what experiences people have had with problem J-pouch and how awful it is to have it removed?  My son has had severe UC for years ended up doing three step procedure to create J-pouch.  His best times were when he was temporarily using the bag.  No pain, no bathroom runs, doing everything a teenager wants to do.  Then we do the Jpouch and it feels like he has UC again.  He has been having trouble with chronic pouchitis, antibiotics work at first and then stop working.  His quality of life stinks right now and he has chronic butt burn from using the bathroom so much. 

Not sure if we just continue to experiment and when its time consider another option.  I have read that the surgery for Jpouch removal is horrible and that he could have all kinds of complications from that one too!  We are all having serious regrets about doing the J-pouch procedure.  We dreamed he was going to have some normalcy back in his life.  We are still waiting for that to happen :(

Interesting in hearing others experiences with this. 

 

Posted 12/10/2012 6:17 PM (GMT 0)
Hi there,

I don't have a j-pouch so I can't comment on that. I have Crohn's so it's not a viable option for me but that being said, I can tell you since my surgery (emergency) and my recovery, I have felt better than I have in years and years. My Crohn's was debilitating and now I can eat, go out and not worry about making emergency runs to the bathroom! I have finally accepted that my ostomy will be life long and now that I know how good life is with it, I am looking forward to all the adventures ahead!!!

I imagine those that have j pouches will chime in here shortly but wanted to welcome you and hope that you find what you are looking for for your son. There are so many people here with j pouch advice, I am sure you will come away with more knowledge than you expected!

Best wishes,

Kelly
Posted 12/11/2012 3:34 AM (GMT 0)
Also don't forget to check out j-pouch dedicated sites like j-pouch.org and even blogs like blood poop and tears or inflamed and untamed.
Posted 12/11/2012 5:46 AM (GMT 0)
I have a j-pouch and possible pouchitis. It is very upsetting to be so happy with the j-pouch and then to go through the uc flare symptoms all over again. I managed to complete my first half marathon with pouchitis but it was pretty painful.

It took a bit of research and going back to my colorectal surgeon to work out a plan of attack.

I am on my third round of antibiotics. The first two times it was Cipro and Flagyl. Now it is Cipro 500 mg 2x and Xifaxin 200 mg 3x. This time the antibiotics seem to be working.

I also take two sachets of VSL #3 DS a day plus 5000 IU Vitamin D and a liquid multivitamin. According to Dr. Bo Shen of the Cleveland Clinic there may be a correlation to low levels of Vitamin D and chronic pouchitis. He has not published any study on this yet but everything else he has said about j-pouches has worked for me so I am trying it. I have had low levels of Vitamin D ever since I had a total colectomy. Testing for Vitamin D is NOT part of a normal blood panel test. Your doctor must specifically request it. My level was so low that I set a state record in a state where we rarely get sunshine!

My surgeon said it could be up to three weeks before the probiotics really start working and I go into remission. He has also scheduled a pouchoscopy with biopsies to determine whether this really is pouchitis or bacterial overgrowth in the j-pouch. Cutting out sugar and gluten can stop bacterial overgrowth so there is a good chance this will be resolved. Dr. Shen has been prescribing Lactulose Solution USP for bacterial overgrowth to use with antibiotics so it is something I will discuss with the surgeon if it becomes appropriate. The pouchoscopy will also rule out any other causes of my symptoms.

I do not know how old your son is or how long he has had pouchitis. As a parent it is hard to be patient and to keep trying the different treatments until you find one that works for your son. If a rotation of the different combinations of Cipro, Flagyl, Xifacin and Augmentin do not work, the next step is Humira or Remicade.

Sometimes going back to an ileostomy for a while clears things up and people successfully go back to the j-pouch. It seems far too early to think about permanent removal of the j-pouch. The most important thing to do is to develop a plan a, plan b, plan c, etc. with his doctor, stay as relaxed as possible and to keep him comfortable.

I use Questran to bind up the extra acids so I do not get butt burn. You may want to talk to his doctor about this. You probably already know about using Balneol on tissue not flushable wipes. The flushable wipes can make our already sensitive areas worse. Calmoseptine on a small cotton ball or gauze pad left onto the burnt area can feel wonderful. None of his friends will know it is there. My favorite soothing treatment is an Epsom Salt bath. The relief from burning lasts for hours. I love to have an Epsom bath before bed.

Hopefully, he will be up and running around by New Year's feeling as good as he ever was.
Posted 12/11/2012 9:08 AM (GMT 0)
It's major surgery but if he thinks his health or life would be better, it's probably the best decision.

Sue
Posted 12/11/2012 7:27 PM (GMT 0)
Hello,
I am sorry to hear your son is suffering. I had a 3step jpouch procedure, then docs determined the jpouch failed, I had it diverted, and that failed, then I had the jpouch removed (earlier this year in fact.)

I had problems immediately after takedown with my jpouch. My local GI and surgeon were not helping me. GI doc kept doing tests and throwing drugs at me and I kept getting sicker and sicker with my massive jpouch problems - much worse than the worst of UC days - just like your son. I then moved on and became a patient of Dr. Shen's at CC - the world's jpouch guru. He has been my GI doctor for 2.5 years now. I truly believe that many of the doctors caring for jpouchers do not have significant experience and/knowledge to help their patients. Chronic pouchitis can be caused by many things- ischemia, strictures, mechanical problems - other than just what people initially think. It wasn't until I got to Dr. Shen at CC that they figured out my "chronic pouchitis" was caused by mechanical problems with the jpouch.

There are many many reasons that a jpouch is problematic.. even saying the words "chronic pouchitis" doesn't really define the problem. So the most important thing first.. is to figure out what exactly is going on.
So a few questions first to ask you:
is how long ago did he have is takedown?
Is he being cared for by a GI or a surgeon? Seems to me that GIs are far more prepared to handle post surgery issues with jpouches than surgeons.
Has he had a scope done to determine if it is truly pouchitis- if so was this done by GI or surgeon, and what is this person's level of experience with jpouches?
Has he had any other tests done since takedown- defecography, manometry, MRI, CT enterography?
Any blood tests, etc?
Has he been on any medications to treat his problems? If so, what?
Is it antibiotic dependant pouchitis?


I can share more later.. but I would be extremely wary of thinking a diverting ileostomy will solve the problems. I know many people, myself included, that the diverting ileo... absolutely did not solve things. I think right now.. it might be good to really get to the cause of this "chronic pouchitis" to see if it can be solved or not. You may need to get to some real experts for this. If you can answer some of the questions I posed above, I can maybe make some suggestions for the next step.

I feel his suffering. I was there. But you can't kick yourselves for something in the past. Best to focus on today and what you can do today to help him for tomorrow.
best wishes.
Posted 12/11/2012 8:18 PM (GMT 0)
ddd45,
I am glad you posted. I think your experiences will help all of us dealing with j-pouch problems.
Unfortunately the GI's in my city are not very experienced with j-pouches and do not like working with the problems other than handing out antibiotic prescriptions like candy. At a recent CCFA meeting there was not a single j-poucher who felt their GI's had specialized knowledge, just general gi training on j-pouches. Dr. Shen is a very unusual and precious gi. The nearest gi with advanced j-pouch training is a 3-hour drive away from my city. Meanwhile, I will stick to my colorectal surgeon as long as he will have me. He has a friendly relationship with Dr. Shen and I trust him. If I have to go to a gi, I will drive the three hours to Seattle. It is important to have a gi with advanced training in j-pouches.
Szm
Posted 12/11/2012 9:43 PM (GMT 0)
I am so appreciative of the comments posted to my inquiry. It makes me realize there is a lot more we need to learn about why he is having some challenges with his new jpouch. To answer of the few of the questions posted -

*He has had his pouch for about eight months
*He has been on and off Cipro 1000 mg per day. When he goes off he reverts back to a UC type state within weeks
*He is under the care of the surgeon's team (all we ever get to talk to is the nurse). But he does have a GI (Dr. Stephen Hanauer at University of Chicago). We haven't brought him into these discussions but perhaps we should based on the posts
*He has not had any tests, scopes MRI's etc. yet -
*We just ordered the VSL#3 to try
*no blood tests ever requested

As parents, just having such a hard time watching the kid stuggle so much but reading these texts, realizing this is going to be a long journey and we have to be patient. Any suggestions along the way are welcome..I am going to make a call to our GI as well.
Posted 12/11/2012 11:44 PM (GMT 0)
I drive 3hours one way to see Dr. Shen, and others now at CC. My local GI seemed to think he had significant jpouch knowledge, I found out differently. But at least he was smart enough to scope me before throwing drugs at me. Problem was.. which I didn't find out until getting to Dr. Shen... that I don't think he knew what he saw on the scope - other than... pouchitis and cuffitis. I believe he truly "overpracticed." Which upon reading this and the jpouch website.. it seems many do. I also believe most surgeons have no clue what to do other than the basics... after the jpouch surgery is done. Thats why they toss out antibiotics before even seeing if someone really has pouchitis.

erferi.. I have heard of Dr. Hanauer. Might I suggest you get your son in to see him AND get a scope scheduled with him asap. Also, I cannot believe with all of his problems and 8months out that he has not even had a scope, let alone a blood test, cdiff test, anything? Unbelievable. How can anyone prescribe medication when they don't even know the problem. It is so horrid to be dumping these potent antibiotics in your system, if they are not even addressing the real problem. and erferi.. I think 8months is way too long for your son to be suffering. It is not time to be patient anymore, I believe it is time to go on a serious mission and get some help from some experts. I bit the bullet at the 5months mark and  hunted down Dr. Shen. I was fortunate that I am an impatient person!!! But also... I was becoming truly truly much sicker. And my local doc.. was just throwing darts.. without a dart board in sight.

good luck. please let me know what else I can answer or how I can guide you.

best wishes.

Post Edited (ddd45) : 12/11/2012 4:52:15 PM GMT

Posted 12/12/2012 2:19 AM (GMT 0)
Be sure to order the VSL#3 DS (Double Strength) this is the one used in the national tests that repeatedly demonstrated a high success rate of putting pouchitis in remission. It is prescription only and was covered by my insurance. The regular VSL#3 did not have the same test results and is not covered by insurance companies.
In haste--
SZM
Posted 10/9/2013 2:53 PM (GMT 0)
Hi, I realize that this is an older thread but I was wondering what happened to your son?  This forum has been an incredible blessing to me for many years as I've read and found much help as I've gone through the ups and downs of living with my j-pouch.  I've recently had pouchitis - didn't realize that's what it was - having it for several months before seeking treatment.  It was terrible... 10-12 times up during the night, intense pain and butt burn, lost a lot of weight, spent lots of $ on just about every type of over the counter treatment, but I finally realized that it wasn't a stomach bug (or whatever i thought - who knows!?), and went to my GI surgeon.  They are truly amazing... some of the best in the country.  He prescribed Xifaxan (sp?) - pronounced ZI-FAX-AN.  Has anyone here tried it?  I'd never heard of it or seen it in the forums but for me, it was a miracle drug!  It's an antibiotic (after trying Cypro a couple of times and ultimately experiencing only temporary relief and side effects such as nerve damage in fingers/hands) - it's verrrrrrry expensive but, thankfully, we have great health insurance.  It's absorbed almost exclusively in the gut - only 2% is absorbed in the bloodstream so there are virtually no side effects and more importantly, IT WORKED!

I just wanted to share that... after searching high and low, I found what worked for me.  The first night that I slept through the night, I couldn't believe it when I woke up... so incredibly rested and relieved! 

Posted 10/13/2013 4:16 PM (GMT 0)
erfeir - First, sorry to hear about what your son is going through.
Second - 'only allowed to speak with the nurse?'!!! I would request a meeting with the surgeons to discuss what all the options are.

And, once you have worked through all the options, or decided which ones are not worth the time/effort/etc., decide what to do.

If your son spends the next 70 years of his life with an ostomy, he will get to live just like everyone else. Yes, it's inconvenient at times, but ask those with permanent illeos on this thread about life 1 year after surgery, and see what they say.

I was given a choice between j-pouch and permanent illeo, and chose the latter - Due to various medical reasons, it was the best decision I could have made.

God Bless and keep up posted!
Posted 3/23/2014 11:02 PM (GMT 0)
Hi, I'm 18 years old and am currently suffering from pouchitis. I welcomed the first of 3 surgeries and the temporary ostomy bag in June 2013 after failing on Asacol, 6MP, Methotrexate, Humira, and Remicade. I was diagnosed in November 2011, and no medicine worked...I only got sicker. I was on TPN w/o food or water for 6 weeks in April/May 2013, and that also failed. I had the first of my 3 surgeries in June 2013, and my ostomy reversal and J-pouch surgery on Jan 7, 2014. The 3 surgeries were performed by a fabulous surgeon at Johns Hopkins named Dr. Jon Efron. After I was discharged from the hospital I felt great -- in the first week I went out to dinner twice and to the movies twice. I should mention that my UC was so severe that I could not leave the house, and by June 2013 I was bleeding so much that my doctors said that I would eventually die w/o having a Restorative Proctocolectomy (My family and I welcomed the surgery and the temporary ostomy b/c it was that bad). We just wanted to try everything before surgery b/c an ostomy bag for a teenager is a very scary thought.

However, after the first week of feeling great after the final surgery, I started to go downhill. I've been suffering from pouchitis from mid-Jan 2014 till now, March 23, 2014. I had a sigmoidoscopy in mid-Feb that showed moderate to severe pouchitis w/ ulcers (they saw no evidence of Crohn's). That confirmed that it was indeed pouchitis, not regular recovery symptoms. I was put on 500mg Cipro 2x daily and 250mg flagyl 3x daily for 2 weeks -- no results. Then I was increased to 500mg Cipro 2x daily, 500mg flagyl 3x daily, 9mg Budesonide 1x daily. I was also prescribed about 10 days worth of 30mg Codeine pills to help constipate me. It slows me down a bit for about 3-5 hours...but I can't stay on it forever obviously. I am also taking 5mg Lomotil 3x daily. I have been on 1000mg Cipro, 1500mg Flagyl, and 9mg Budesonide for 2 weeks and have seen no decrease in inflammation (no results at all). The Codeine and Lomotil do help, but they aren't the cure. I have diarrhea 3-6 times from midnight to about 10AM (Codeine helps), and probably another 6-9 times from 10AM to Midnight. Throughout the day I am very weary and fatigued from barely sleeping and going to the bathroom so much. My GI told me that it can take 3-4 weeks for the antibiotics & Budesonide to kick in, but my family is starting to lose hope...No medicine besides Prednisone had helped at all in the past. It just seems like no matter what, I am always sick. It's very frustrating, and I know my parents are/were just like erfeir... extremely frustrated and that terrible feeling of not being able to help your child. I can barely leave my home, and every day is just surviving, not living. I was told to use VCL#3 when the pouchitis is gone, but not now. Has anyone here been on the same or similar meds and seen results (or haven't seen results)? I'm looking for any hope and suggestions that could help get rid of this severe pouchitis! I've been told that biologics are possibly the next step, and I'm very scared of going that road (not to mention that Humira & Remicade failed. However I have heard of a new biologic called Simponi).

Post Edited (Jacob W) : 3/23/2014 5:12:08 PM (GMT-6)

Posted 3/23/2014 11:43 PM (GMT 0)
Hi Jacob, sorry you are having such a rough time.

I urge you STRONGLY to check out this article, and perhaps even bring it to your next doctor's appointment: http://www.cghjournal.org/article/S1542-3565(13)00483-7/fulltext. In particular, scroll down to Figure 5 labeled "Treatment algorithm for pouchitis". It's a flow chart showing how to treat pouchitis depending on how it responds to different meds.

Since Cipro and Flagyl did not improve your symptoms at all, you are on the right side of the chart where it says "Antibiotic refractory pouchitis." You can see there are many more treatment options available, as well as tests that MUST be performed, such as testing your stool for CMV (a virus that can cause pouchitis) and C. diff (a very virulent bacteria that you have probably heard of already). I myself recently had a bout of pouchitis that was actually caused by C. diff infection, and vancomycin made a BIG improvement in my quality of life. Some doctors think you have to have a colon to have C. diff, but that's not true.

I hope that's helpful, let us know what your next step is and how you're doing.
Posted 3/28/2014 2:15 AM (GMT 0)
Have not been here for a while, been terribly busy living life!
I had the J-Pouch surgery as well, I had chronic pouchitis and then decided to get an end-ileostomy. I've been with the ileo now for about 3 years and the only issue has been occasional issues with the remaining dormant j-pouch still inside of me.
If there are no medical advances in the next 3 years I will be removing it permanently and sticking (pun intended :)) with the ileostomy.

Life has not been perfect but I have learned to live with it. I travel almost every week, no issues with tsa. I'm in front of clients and entertain quite a bit. There is a lot to be gained by making the tough decisions we have all made in our lives. People who have not made the leap will not fully comprehend the change it brings to your life. When the constant pain stops, and you start to eat for pleasure again ... that's when you have made it! :)

Sending good vibes ....
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