Hello Torres,

I know exactly what you are going through since I had to have my j pouch of 30 years removed because of recurrent high grade dysplasia in the rectal cuff.  You did not explain what condition is making removal necessary, but I would assume you have made attempts to keep your pouch.  For me, the thought of having an ileostomy was scary and an option that I wanted to avoid if at all possible.  Fortunately, I had some familiarity with the k pouch and the similar BCIR, both of which avoid the need for an external bag and its associated issues.  There is a lot of information and even some videos on the internet about both of these procedures.

I opted for the BCIR, which was done by Dr. Ernest Rehnke in St. Petersburg, Florida.  The results for me have been excellent and I enjoy a very good quality of life.  Dr. Rehnke trained a surgeon from London to do the BCIR (Dr. Edward Westcott) and I believe he is currently doing them.  There may other surgeons in the UK who do the k pouch procedure.

My BCIR surgery went well and, to the best of my memory, was easier to tolerate than my j pouch surgery.  The first two days were the most painful, but the medication I was given made it more bearable.  My trip home took 12 hours by plane and car and I had no problems with the trip.  I did lose quite a bit of weight after returning home due to a poor appetite, but that turned around fairly soon.  Three months post-op, I was doing most of the activities I enjoy and eating well.  I am so thankful that there were options to getting the bag, but that decision is a personal one that may be influenced by your particular medical conditions.  Please feel free to send me a PM with any questions you have.

Bill

i'm a very happy k poucher, with the exception of having some limitation on my foods as everything needs to be digestible.  forget mushroom, peas and the other fibers.  the k or bric is not for everybody, but i suggest you check out the k pouch korner on this site.  excellent info, which helped me make my decision and find my doc, at cleveland clinic.  good luck and keep us posted, janet

PM me. 

I had mine removed 9 months ago. 

I was just like you. 

Pouch creation was a nightmare. 

Made the removal so easy. 

It all depends on how long your pouch has been in there. 

Pm me.  I'm sure everyone here is tired of my story. 

You have an option.  Bill mentions it above. 

Richard. 

Torres, you have several options to a jpouch posted here. I had mine removed and have a permanent ostomy. My recovery was much easier than the surgery for my jpouch creation, perhaps because I was quite ready and prepared. I also only had my jpouch for five or so years. "Difficult and painful" may be related to reason for removal, length of jpouch stay, complications, etc..not a set in stone thing....

It is a scary, daunting prospect and I remember being there. Once you've decided which way to go post removal - kpouch, BCIR, ostomy - try to focus on the future. It really helps to put things in perspective. I am very satisfied with the results. Feel free to PM me with any questions.

J-pouch removal can sometimes turn out to be a complex surgery. I'd suggest finding the most experienced surgeon you can, or at least making sure your current surgeon has done plenty.

It is scary.  I didn't just bounce into pre op ready to go.  My guts were in a knot.  Knowing how bad it was getting it the pouch I was expecting the worst.  The absolute worst.  But I worried for nothing.  It's not pain free but once you get past that and it only took me a few weeks it was wonderful.  And a month after surgery I came to terms with my new body.  It was even better.  

Your going through normal terror thoughts.  I know.  Both lambie and I went through it. But when you do get to the other side we welcome you to a new life.  A better life.  I cannot thank my surgeon enough for making me healthy again.  She smiles every time.  I love that. But I had to make the decision for her to do it.  It's no picnic at first.  But it only gets better.  And still does.  

Trust me.  I am the last person that thought I would adjust to this new way so fast.  I'm amazed.  

Richard. 

You are right Scott.  Most depends on how long and scar tissue.  We posted at the same time.  

I stayed with the surgeon who made my pouch.  She does several a year.  As for removals.  I didn't ask.  But she assured me it would be easy.  After all she made it so if anyone knew what was going on in there she did.  

Torres. 

We are here for you.  Your not alone. 

Richard. 

let me add that it's great you are doing--or thinking about doing-- meditation.  jlh

Just wondering as I don't have detailed knowledge of the K Pouch or BCIR, but are Chrons patients candidates for either? 

Best of luck to you Torres! You are in my prayers! 

I had my j-pouch removed at the end of May.  I was excited to get it out.  I was done experimenting with ways to save my pouch.  For me the removal was way worse than my original j-pouch creation (which was 11 years ago).  The pain was intense (mostly in the my butt from sewing it up) and I had a lot of complications (which was not unexpected due to my history) and ended up in the hospital for 20 days.  It took me about 2 months to start to feel better and 3 months before I could get back to work.  As a point of reference, my surgeon told me that I needed to take off at least 8 weeks from work provided there were no complications, and longer if I had complications.  

To help with my recovery I did yoga daily before the surgery and practiced mindfulness meditation before and after the surgery.  I had multiple podcasts saved on my phone so that I could easy find the ones that I liked.  I also used aromatherapy to cope with the pain and the nausea.  I also bought very nice ear plugs, they were a lifesaver.  I will never go to the hospital again without them.  But the best thing that I did was not entering the surgery expecting for it to go perfectly and just to accept each moment for what it was. But overall, I do not regret the removal of my pouch and my terminal ileostomy is easy to take care of and does not bother me at all.  Best of luck.  The surgery is big, but doable.    

Brewbirds, if Crohn's is the reason for J-pouch failure then a K-pouch or BCIR would generally not be a good option.

Some (but not most) surgeons will create a J-pouch for selected patients with known or suspected Crohns's. That was my situation. 

Thanks Scott! Yes my surgeons do not perform JPouch on Chrons. But let me ask you, if they told you 100 percent chance you have Chrons, would you have had JPouch surgery? I ask because doctors at the Cleveland clinic changed my diagnosis to Chrons, after having  a 14 year awesome run with my JPouch. The clinic told me I was still qualified for a redo as above the Pouch is normal. Pouch is terribly  inflamed even with use of biologics, methotrexate, antibotic etc. It won't clear up. Does it sound a bit crazy a redo is even an option? The doctors in my area believe so and say no way. 

But At the same time, I look at it that it was a complete blessing they misdiagnosed me. I truly had a wonderful success story, smooth surgery, bounced right back to activities, married two kids, and never really thought about the disease for 14 years. 

Just curious thoughts on redos, not because of a mechanical issue but that the disease has taken over again.

Brew-

I'm not sure if I would have proceeded with definite Crohn's, since that would typically have included symptoms very threatening to a J-pouch. The biggest issue, though, is any indication of perianal disease, which can make life with a pouch miserable. What exactly is wrong with your pouch? How much healthy rectum is there, if any?

Wow!  Many thanks for the personal and honest responses.  The experiences are many and varied.  This was my first post ever on any forum after 25 years living with a j-pouch.  Life has been good to me.  I realise I didn't go into a lot of detail with my life as a j-poucher or the recent issues that have led me to this point of having it removed.  We all have our reasons and now that I have to face mine I wanted to focus on preparation, particularly looking at making myself as head-strong for the recovery as I possibly can.  I want to go into this operation with as much of a positive outlook in order to refocus my mind from the pain which will be inevitable (and I can't stop thinking bout it) to focusing on the outcome which will be life changing and healthier (this is the plan).  

Obviously, complications are out of our control and I want to thank you SCW for your candid sharing - you touched on the things that play heavily on my mind.  I will be taking your advice to do some yoga, download mindfulness podcast on my phone, consider aromatherapy and getting myself good earplugs.  If there is something I find most stressful in hospitals are the many noises that keep you awake.  I appreciate your honesty - it will be painful but I relish the thought of knowing that it will all be worth it.  "No regrets.  And it is doable."  THANK YOU FOR THESE WORDS!

Torres, when you mention pain, you say you understand it's more painful than the original surgery. Is this from what you've been told? What you've read? I am really just curious. I read many threads about difficulty, pain and complications before my surgery, some scared the pants off me and some put me at ease. From A to Z, they varied that much. I figured I had just as good a chance as any of having a good outcome - kind of like gambling - plus, my surgeon was excellent and went into this with a good attitude because he had a lot of experience. I expected the worst but knew I wanted to be on the other side of this no matter how I got there. If it's the butt pain you're concerned about, Percocet worked wonders for me.

I highly recommend you speak to your doc ahead of time about pain management. This can help alleviate your stress level about it before you get in there and the calmer you are ahead of time, the better. 

Hello, Torres. If you ask your surgeon, perhaps he/she can arrange for you to talk with three or four patients who went through this exact surgery, in the same hospital, with the same medical team as you will. That way you will hear directly from your surgeon's patients and you can ask what they experienced with this surgeon and hospital, especially the pain management team, and what they experienced in the days following surgery. Remember to take deep cleansing breaths before and after, fill your cells with oxygen. Good luck to you. 

Yes Scott, Chrons in the rectum and pouch. Terrible inflammation and ulceration that won't clear up. 

Hi!  I had my jpouch removed after having it for 15 years.  To answer your questions, I was on the SCD/GAPS Diet for a year and a half before surgery.  I think this made me the healthiest I could be.  I was the gym 3x a week, too.  I also did acupuncture.  I prayed and got on everyone's prayer lists- Lord, mercy!  I planned for an 8 week recovery.  I ended up on the pain pills/no driving/no lifting for 4 full weeks, pretty well recovered at 6 weeks and totally healed at 8 weeks.  I didn't go back to the gym for 3 months, but I did walk each and every day of my recovery.  To heal, eat a lot of protein (pb, Greek yogurt, meat, eggs).

I too have no regrets.  I love what the ileostomy has done for me- no pills, no pain, no symptoms, no doctors.  These two years have been my healthiest yet!

If you click on my name, you can then go to my profile and look at the activity tab and see my other posts about my recovery.

Best wishes!

Laura

Loads of helpful advice/tips.  You guys are wonderful for sharing!  Thanks Lambiepie, Winterberry and LHetti for your positive input.  I have taken aboard the advice given here, putting together a preparation plan which makes me feel better about having the j-pouch excision and going into it with a better headspace.  There is so much that is good, bad and ugly about removing the pouch, anus and rectum but in the end bringing back your health is the final message I am hearing from everyone.  And I hear you loud and clear!

My consultation with my surgeon will take place in November at which time I may have more to ask.  Until then thanks again and much health and happiness to you all.

I am preparing for a mucosectomy due to prolapsing of pouch lining and a flap that developed. Surgeon hopes to do it transanally but may decide I need ileo, temporarily. He laid out so many possible outcomes yesterday that I'm overwhelmed. From simple mucosectomy to ileo to opening me up To complete mucousectomy, to redoing  pouch to possibility of permanent ostomy. I know he wants me to realize all risks but has anyone else had these all laid out in front when planning a mucousectomy ? Haven't had pouchitis, but Cuffitis and continued extreme high frequency for 2.5 years. Wondering if this is normal? I m having hard time accepting possibility of permanent ostomy because I didn't think I was there yet and now need to prepare for that or cancel surgery.  I knew it would happen down the road. My QOL not great  now, but I manage. My surgeon has lots experience with problem pou he's so I'm not questioning his skills, just not knowing what I'm entering into when I go in for surgery in 2 weeks. Seems like most know they'll have pouch removed and try to,prepare for it. Think I need to take some of this advice! Does this sound weird to anyone else or just me?

ljz

Ljz, if your surgeon does the k pouch operation, that would be an alternative to an ileostomy.  Hopefully, the mucosectomy will be successful and will give you the quality of life you desire.

Torres, I'm with you. I've had my J-pouch for 19 years and now ready for a permanent ostomy. I was later diagnosed as having Crohn's. I hope you get more answers from a surgeron...I went to Cleveland and couldn't get the surgeon to answer my questions.