It is encouraging that 2 months after my diversion my chronic cuffitis and chronic pouchitis are gone. My j-pouch looks good. No more inflammation or UC, cuffitis. Hopefully I will never need another operation. 

 

Misticobra,  I wish you all the best with surgery tomorrow RIchard.  

 

 

Richard

are you ready?  Hope so and my thoughts are with you and surgical team. Janet

I am still up.
I am as ready as I can be.
I don't have to be there till 9am.
For an 11am surgery.
It was 8 am surgery  but she must have an emergency so she moved it back.  Times are all central.
I hope I can sleep.
Thank you Janet for thinking of me.
Richard.

I hope all goes well Richard. Please post when you can. 

JLH, I just read in your post about where your pouchitis is not where it is stapled together. That is where the cuff is, the few centimeters of the retained rectum that they staple the j-pouch to.  That area is usually treated topically with suppositories or other means. It sounds like you might not have cuffitis, UC, which is great.  

 

Is ischemia in your pouch from blood supply problems?  There are so many different pouch problems. I've never heard of that one before.

 

I met a gal here that was at Mayo's when I  was there. It was nice to meet her. She was there around 3 weeks. She had her j-pouch removed elsewhere but something wasn't right. She went to the Cleveland Clinic and Mayo's to find out about the needed surgery to correct the problems from the excision surgery. She decided on Mayo's as she preferred the way they were going to fix it. We have the same GI but different surgeons. 

Wishing you the best Richard. 

 

TE Marie,

So happy your pouch looks good. Unfortunately this did not work for me. 

 

Janet, thank you for all the info. I will pm you 

Susan

te marie

had cuffitis also, but the ischemia/pouchitis is where the pouch is constructed as a pouch. good try, sorry not the solution.  the j must come out as not sustainable given my refractory to antibiotics and other meds not working.  also, a slew of probs with anal canal.  jlh

In the waiting room.
It will be a few days before I get back.... if I even think of it dealing with all that's coming. Thank you all for the best wishes.
I hope for the best also.
Richard.

Late to the party, but want to say good luck Richard.  Fingers crossed all goes swimmingly.  (I too am now much more seriously considering pouch removal).

Sorry Janet, I know your pouch needs to come out. I'm sorry I'm having a difficult time expressing how I feel. I have a friend who had an ischemia attack in her colon. She doesn't have an IBD. When I  looked it up it up on-line it said it was caused by the blood supply not getting to that area. That's why I  was asking about your problems. It makes sense that it could hapen in the pouch. 

 

Has anyone heard from mysticobra, Richard, since his surgery on Monday?  I imagine he's very busy. You know how those nurses are. They want you to walk,  pee on command and are really focused on bowel sounds, etc. So posting here isn't at the top of his to do list.

 

 

No I haven't heard from Richard, but let's wait until he gets home and hope it's a really excellent report.

 

This morning I will be going in for my k pouch surgery!  Spent all of yesterday in preop at Cleveland clinic. Upon getting back to the hotel at 7 o'clock  I drink some dreadful stuff that made me nauseous and gave me the trots. At least I don't have to clean the toilet.   Everybody at CC has been so helpful and respectful and polite. Their protocol is excellent and I feel very comfortable going into surgery with them. It's  also fantastic to have support from other j and k pouchers--you all have made a big difference in my attitude. Thanks so much, Janet 

TE Marie

 Just realized I hadn't clarified about my pouchitis. Both the lining of the pouch was inflamed  as well as the areas where it had been stapled together and did not have enough blood flow.  It's taken me a long time to get to this point of having it removed. And I'm still ambivalent about it, but know it's necessary. J

Hello all - I have a question: I have an appointment with Dr. Andrew Shelton at Stanford (University) Cancer Center on Dec. 3 to discuss pouch reversal. Has anyone heard of him or know anything about him? Jan? (I also have an appointment with Dr. Remzi at CC on Feb 8). Thanks to everyone.

Dear Janet,

 

I hope all went well with your surgery today!  You are at a great place with wonderful surgeons and other medical professionals so all should go as planned.  I hope you love your new k-pouch.  Just think, no butt burn this time!!

 

 

 

Hello all!
Please keep In mind of all the opiates I have to take.
For the last time!  I hope.
I feel good.  Just  the hurt from being cut open. 
I feel good.  I hate to  post early and everything just fall apart.  But I don't think it will happen!  I am so happy.
Thank you EVERYONE!  I have had 0 PROBLEMS!.... Usually I am a magnet to problems. Thank you everyone for inviting me into your home for this short while.
My surgeon was ecstatic at the outcome. 
She smoothed it all out and will stick like a charm... And is.  No more belly button either.  I am glad she took that out. I won't miss it.
Now.... I know it's only been five days but I can answer from my point of view....
Richard.

       
P. S.
Picture is upside down.  But she did a fantastic job.

Glad to hear you are doing well!

 

Jan

As for mastering the he Ileo... Mmm... I do not think that will be a problem for me.  She did everything possible to make it a no factor in my surgery.  I won't have to worry about it.
I have only changed it out once.  That was on Thursday.
Everything looked good. 
And i want to than everyone here and beyond.  O... The things we go through.  Time for that to stop and move on.  It has stopped and I am moving on.
I still have my scary thoughts days.  But all we can do is lean on each other for help. 
I am here to help with that now.  So please if you need some advice or have question.  Please ask.  I will try my best to help.

Thanks for posting how you are doing and including your picture Richard.  No belly button is a great idea. I have to deal with mine when changing my wafer. Without one she gave you a nice flat surface. If I  eventually have to get mine excised I will ask for no belly button. 

 

How long will you be in the hospital?  I am glad to be off of my soft food diet. Hopefully you can expand your diet choices too. I hope your recovery is complication free!

Speedy Recovery Richard!

Great news, Richard! Being on this side of your surgery with no complications, you can take a great big cleansing sigh! 

Well.... I hope to get out tomorrow.
She is notorious for long hospital stays.
Tomorrow  will be,.... 8 days.
I want to go home.  Cuddle with my wife and dogs and appreciate all I have!  Thank you for all your thoughts and everything. 
Richard.

I hope you are recuperating well Richard. 

 

Has anyone heard from Mysticobra, Richard, since his last post above? I don't see any public posts on the site from him.   Hopefully he is ok.

I'm free.....!
Still have alot of pain and what I call  hospital fog.
Cannot focus.
Now... I am weak after 11 days in but hope to get stronger as every minute goes by.  It's a tough surgery that's for sure.  And at the same time I have to get used to the bag.  I am only just on my third bag!  Wow. Last one was on 7 days.  I k kw that's long but the one before that was on 5 days I think.  They say I have a beautiful stoma... I don't believe any are beautiful but I think some are more well formed.
Thank you for all the thoughts and everything else.
Won't stay long.  Can't.  Even this tires me.  Especially My eyes.
Richard.

It's good hearing from you Richard! Thanks for posting. I have stoma envy. My Stoma nurse says mine is lopsided. In other words the hole is not pointing straight up. It's great that you can wear it so long. 

 

I hope your recovery continues well. 

 

Thank you TE Marie.
I know my surgeon was looking for as close to perfection as she could get.  I think she did a fine job.   She took the time to smooth it all across and get rid of the belly button where there was alot of scars and bumps.  I asked her prior about where I wanted the stoma and she outdid herself.  I think once all the swelling and such goes down it will look great.  It's actually  a large stoma but I think I will shrink up a bit. 
Stoma envy.  Lol.
I don't like the look of even a nice one.  But I am glad everyone is impressed with it. 
My stoma nurse put a Hollister moldable I brought with me the last time.  No paste... No powder... No nothing.
She showed me and just snuggly stretched it on.  I snapped a bag on and was done.   5 minutes.  Wow.
The only thing that bugs me so far is the way the bag... Any of them really.... Just hang.  Even with a small amount in them.  I feel more comfortable when it's empty.  But  I will see if I can find something to lighty support it.
And may I add.  I have no distress.  My butt does not hurt.  I am not running back and forth to the toilet.  Of course it is not a dream situation.  I have alot of healing to do.  So far that is going well.  I wish everyone he best with their struggles.
Especially with the Holidays coming up.  Even more challenging.
Richard.

Richard,

It sounds like you are well on your road to recovery. Your stoma wear times are impressive.

 

As far as the "hanging" thing, I think that you will mind it less as time goes on. Additionally, look into belts for your stoma, including the "stealthbelt." Many people say this improves their stoma experience a lot. Even a simple parastomal hernia belt can keep your bag more securely on your belly. Please try ALL the different stoma supply samples. Finding the combo that's right for you makes all the difference.

On national or something like that "ostomy day" I was in a Facebook Ostomy support group and another member was selling her "bag" covers at 40% off. There was a link to her place on "etsy". Never had heard of them before but purchased 4 for $22. The best one is made of a light weight flannel.  I  dislike the bag laying right on my abdomen.  It heats it up and bugs me. It is more comfortable having some material between the bag and my skim. There are others selling these fashions on etsy too.

 

I also ordered some things from Ostomy Secrets. They have underwear, men's too, that are $25 each.  Kind of a steep price but might be worth ordering a pair.

Good to hear Richard your so positive! And great wear time at such a early stage! Healing hugs to you!

Anyone hear from Janet and her k pouch?

 Hi guys!

 

Thanks for thinkng of me. I have been busy all morning with final prep for today's release from hospital! The stoma nurses said I'm doing an excellent job on maintaining the drainage.   Had a minor blockage this morning so that gave me some extra practice with pulling out the tube and irrigating it.  Everything else looks very good and they gave me a get out of jail card for free. 

 

 Hope others are doing well with this ongoing maintenance of our health health. Will check in again soon, Janet 

Great news Janet! 

 

That is good news Janet.
We all have to be so strong to get through any of this.
You sound like your doing well.  I know it's not one hundred percent.  But we have to make it work.
Keep us up on things.  Especially good news!
Richard.

I agree we have to make what we have decided upon work. There aren't anymore choices for me.  I am going to have to go to a pain management doctor as the lysing of my adhesions and shutting down of my j-pouch has not gotten rid of my pain. The medication I have been taking for 5 years either isn't strong enough as I have more pain or I am needing more because I have built up a tolerance. That is a slippery slope. Dependence is there but not addiction,  I don't think. I  am putting up with more pain as won't take more than the daily prescribed amounts. I am so disappointed and this is depressing me more