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D
Hi
My name is Danny and this is my first posting.
I live in Melbourne Australia. I am 54 years old

I was diagnosed with UC in 87
Had a proctocolectomy and J Pouch in 1992
Temporary ileostomy for 6 weeks
Chronic pouchitis ever since
Just about tried everything and have not had any relief
The only thing that seemed to work was Cipro for the first week

Now I have a stricture and signs of Crohns
My surgeon has indicated surgery for the stricture is not really an option due to the severe pouchitis/Crohns

My GI has indicated that I will now qualify for humura or infliximab however this process may take 3 to 4 months as I need to prove that I have tried all other alternatives. The stricture has made life quite unbearable as I am constantly in pain and going to the bathroom.

My dilemma is that I may delay surgery only to find that the infliximab does not work or I have some serious side effects. To date I have been quite lucky though as I have been able to tolerate the medications

If the infliximab works then I still have the stricture which I assume will require an operation or some procedures to have it enlargened. The GI indicated that the infliximab may actually create some additional scar tissue around the stricture making it tighter.

In essence I am tired and an on the verge of making THE DECISION to have surgery to have an ileostomy.(Unless someone gives me some new information). It appears I have two options.

One is to have loop stoma ileostomy and keep the pouch. This is a simpler operation, the one with less risk. However on this forum I have read that sometimes the pouchitis remains and still needs drugs to be managed. Also there may be urges to empty the pouch of blood and mucus. In another article sunflower33 ON JuLY 21 2012 posted she experienced extreme pressure discomfort due to the pouch.

With the above in mind it appears that many favour having the pouch excised and to have a permanent ileostomy. The surgeon had indicated that this is major surgery (3 hours) and is difficult due to the scar tissue from previous operations. There are risks of cutting sensitive nerves potentially making me impotent, not to mention other risks of bleeding etc. My surgeon is a well respected colorectal surgeon professor Ian Jones for those of you in Melbourne.

So there is my dilemma. I was hoping to potentially gain some insights/help/ suggestions from this knowledgeable and helpful forum. Maybe someone has to make a similar decision. I am afraid that after so much pain and suffering I don't want to have an operation to find that I can be potentially worse off.

Any help comments would be greatly appreciated.

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
Sorry to hear about your troubles. About the only other thing I can think of for you to think about, is to not assume you will not still need medications, including infliximab or other biologics, even if you opt for the ileostomy (with or without removing the pouch). When you have a Crohn's diagnosis, that can change things, as you need to preserve as much small bowel as possible. With Crohn's, you never know if you will need future bowel resections.

But, it can take up to 3 months for biologics to work, so it can delay the inevitable.

Good luck with your decision.

Jan Smiler
Jan Dollar
rachelravenrachelravenMember
Wow, yet another two decade-ish person having issues with their pouch. I think I see a theme here; it's happening more and more.

I have developed issues at 21 years in (see my signature).

I have an anal anastamosis stricture that keeps coming back. I'm having issues currently.

My GI is treating me with Humira in the hopes of helping my fistula and calming my IBD-type pouch issues. I only just did my load on 9/25. Luckily, I was approved without question on our current insurance. I'm not a clear-cut "Crohn's" picture, but I'm definitely showing inflammatory bowel issues, on some scale. He thinks it's because of the "umbrella" that IBD is; it's not as simple as a) Crohn's and b) UC. He says that pouch pathology years later show as "colon." *I* think the body is trying to now attack the "new" colon, like, "HEY! It was gone! Now it's BACK! COLON!!" lol Well, something like that. Genetics are still there, in play.

My outlet stricture gets dilated by my colorectal surgeon, from time to time. This started in 2013; I never had issues before that/the fistula. This is partly why my GI thinks it's inflammation (and the CRS says "inflammation" when he talks of the strictures... and my C-reactive protein was up now).

Things are tight right now, and boy, are bulky stools hard to pass at the moment. I'm always continent; strictures make me super continent! Even with liquid stools! But strictures can be dilated, and people can learn "self dilation," too, so you *might* be able to control that, if the Remicade can chill out your other issues. Anyway, I think I'd still give it a try before you throw in the towel completely.

I just hate this, but *I'm* not ready to throw in the towel yet, myself... but it sounds like you are worse off more ways than I am. Plus, that wait of 3-4 months is pretty disheartening. Overall, my pouch itself looks "pretty ok," but it's the cuff, outlet anastomosis, and perianal area that seems problematic to me. Though I do say, sometimes at my most miserable, if it was easier, I'd go for the end ileo at the moment. And it might become an issue and decision I have to make, eventually... though I swore to myself, when I was 19 and had my loop ileostomy, that I could totally rock the ostomy if I had to. I didn't think it was all that terrible then. And now I'm a 43 year old woman who isn't as concerned with body image issues pertaining to a pouch, if it lets me have a good life, you know?
rachelraven
D DS60Member
Thanks for your comments and kind words. It's good to talk toothers facing the same difficulties. It is not easy trying to put the medical information together. Sometimes our caregivers are conservative (due to potential litigation) others may be arrogant offering little explanation. Also is not easy to know what sort of questions to ask. Sometimes we think of questions after the appointment you had to wait 6 weeks for.

I would be greatly appreciative to hear from anyone who has had their J Pouch removed and a permanent ileostomy. There are so many questions like

How long were you hospitilised?

What was it like after the procedure, I suppose there were catheters, tubes wires and all sorts of gizmos attached to your body

How much discomfort was there?

Could you sit after the rectum was removed?

What was the process of introducing foods?

How much time did you need to take off work?

Did you lose weight?

Anything you can tell me about the procedure how you felt, the recovery, getting used to the ileostomy ?

There's a lot I know, maybe much of this has already been covered on this forum and I need to spend some time researching the forum and potential other sources on the internet.

Regards
Danny
D
LHettiLHettiMember
Danny, I'm sorry!

I did Remicade and actually responded very quickly, within weeks of starting it. Initially they commented that I could be the poster patient because my inflammation markers were perfect for the first time ever. Sad to say, I only was on it for two years before it wasn't effective. I'm still glad I tried everything before giving up my pouch. I loved my jpouch!

I've posted a bunch about new pouch excisions and perm ileos as I had just it all on April this year. If you click on my name (in blue) you can easily search the other posts I've commented on. Having my pouch out was the hardest decision and it took me a full year and half to be able to sign up for it. My doctors recommended it to me back in 2012 and I even cancelled my surgery date once.

To answer your questions, in my experience:
7 days in the hospital, due to ileus

I had a JP drain and also a wound vac for a few days

I was on 4 types of pain killers (for about 3-4 weeks), pain was pretty serious

I could sit for meals, but in general I was on the couch or in bed. Don't sit at a full 90 degrees either. I was in the recliner a lot also.

Foods after surgery: low residue meaning no nuts, fresh fruits and veggies but instead things like white rice and bread and pasta, cooked veggies, applesauce and I added things back quickly (6 weeks later) without any issues.

I am employed by my little ones Smiler but I had to sign them up for full time daycare for 8 weeks because I couldn't care for them. Plus, you can't lift anything for a while. I was definitely feeling good by 6 weeks, but 8 weeks I was really healed. Those incisions take a loooong time to heal. My sutures all dissolved, but a few spots were reopened and probably took 7 weeks to close. Remember that everyone heals differently, so may be much sooner or longer.

I lost weight initially, but gained it all back quickly. Not like the 25 pounds I lost with my colectomy!

I did what the surgeon said: walk daily, eat lots of protein, stay hydrated, thicken things up. I also had an at home nurse for 4 weeks helping with my wound care and ileostomy care. Ileostomy is easy and much different than I remember of my temp one 15 years ago. It's just a little tricky with your swollen abdomin and incision line in the beginning.

It's a huge decision. Make sure you have an experienced surgeon and then a helpful stoma nurse.

I can't believe how great I feel! I didn't want the bag again ever, but here I am living it- completely pain and symptom free and celebrating that!

Best wishes in your decision.
Laura
LHetti
D DS60Member
Big Thank you Laura
God bless you.

It's great to hear that you are feeling great now.

I am ready to have the operation and say good bye jj and hello new healthier positive life. Hopefully I can have the surgery in in a month or two.

Now that I have made the decision I can't wait.

I hear that the operation can take 3 to 5 hours, is that correct?

Ah!! that's how you can see a persons threads. Click on the person's name.

Thank you all you beautiful people.

I will keep you informed of my progress.

Danny
D
U urbhuskerMember
I've had my j-pouch for about a year and a half. Worked well right at first but was dependent on constant antibiotics and flagyl worked the best until I became allergic to it. Since last November things have gotten steadily worse. Tried many different meds, therapy, etc to no avail. Met with my Mayo GI and surgeon two weeks ago. They both agreed removing the j-pouch and going to ileostomy was for the best. Talked to my surgeon locally here in Des Moines Monday and he concurred. Surgery scheduled for this coming Tuesday. Sometimes I wonder if I'm making the right decision...then I go to bed and have two accidents a night plus the 20x a day I have to go to the bathroom reminds me this is the best decision. Dr. said it was only a 2 hour surgery, which surprised me. Everyone on here says 4 to as much as 6 hours. I asked if he is removing the pouch and giving me a Ken butt or just unhooking it. He is removing and doing the Ken butt. I guess we'll see just how long I'm on the table.
U
C chiromancerMember
Had my pouch removed. Disconnected after about 18 months, removed 6 months later due to excessive uncontrollable excretions from the disconnected pouch. Have end ileo. The removal took about 4 hours, done laparoscopically. I do not have ken butt. Didn’t want it, fast recovery I have been been fine withoutthe anus being cutout and sewn up. Doing well with end ileo. Thepocuh removal can be a tricky surgery due to scar tissue so you need a surgeon experienced in the procedure, not just any surgeon.
C
B BobalenoMember

First time post .

I am a 70 year old male retired builder and hopeless golfer .I had uc for 20 years and yes it went to carcinoma so a j puch op was recommended .The temporary ileostomy (after all my fears )(Vanity?) was great and and a great relief after uc (and knowing where every toilet was in Auckland )

So the ilo was removed and the pouch took over my functions  this was in 2000 and for a start it was ok,but over the years I have had bad bum burn pouchitis bad anal cramps  and minor leakage turning to fecal incontinence worsening as the years have passed .

Many times I had considered going back to an ilo but chickened out .

However (as I sit here with anal cramp and leakage) I have made the decision to go ilo and to leave the pouch intact hopefully to only let a small amount of mucus pass.

At 70 I still consider that I have 15 good summers left  and a Bag wont be to bad ,the proctocolectomy and J Pouch opp buggered my sex life so that is not an issue now .

So I'm for the chop on wed 28th and its a bag for me hopefully the pouch will behave and allow me a reasonably good quality of life as 1he last 3 years have been Crap (excuse the pun )

Good luck to others who are facing the same dilema .

Bob the Builder 

B
MysticobraMysticobraMember
DS60 posted:

So there is my dilemma. I was hoping to potentially gain some insights/help/ suggestions from this knowledgeable and helpful forum. Maybe someone has to make a similar decision. I am afraid that after so much pain and suffering I don't want to have an operation to find that I can be potentially worse off.

Any help comments would be greatly appreciated.

OK.  Insight.  I had mine removed almost eight months ago.  End ileo here.  No loop.  Of course I had my doubts going in but the week before the surgery I had to wear a diaper to bed because I knew it was gonna happen. 

My surgery took about 4 hours.  I was in the hospital 11 days.  She didn't trust me.  7 would have been enough.  

Like I said above I had my doubts before surgery.  I didn't think it would make things better.  I couldn't have been more wrong.  I could tell the difference right away.  I always had tension in my mid-section.  That is all gone and totally relaxed there now.  Wonderful feeling.  No gut tension.  Never thought I would get rid of that.  I don't regret it one bit. I'm all sewn up down there and happy to be after the years of burn and other problems down there.  And it doesn't seem weird like I thought it would be.  I feel normal.  It's so much easier and painless to poop in a bag.  I thought that many times how easy it would be to poop in a bag as I was trying to hold it on the way to or from work.  I was right. 

I have my mind and health back and no regrets.  And no pain!  No drugs!  No more Dr's! 

I wish you the best.  If you have as many problems as I have had you will find relief.  Dealing with a bag is so much easier than people think.  And it sure as hell better than all the pain and urgency you have with the pouch.  That will all disappear and seem like I was a dream.  I am in a good place now.  Of course I have to wear a bag.  But I am happy and healthy now.  We'll worth it.  You are gonna have doubt.  I did. 

Richard. 

Mysticobra
InbetweenerInbetweenerMember

I had my ileo for 12 years and now have a j pouch that I'm wondering why oh WHY I ever agreed to. It's not connected up because of lots of problems. And reading all your posts, I'm thinking that I shouldn't take the risk of EvEr letting it be connected up. I'm going to ask my surgeon next time I  see him, to give me my Sac Magique back. Never thought I'd see the day I'd ask for the bag back, before the pouch ever had a chance, but if it can't behave itself before it's even connected up, really what chance does it have? And I'm just NOT going to waste anymore of my life. So you go get your bag, I'm going to get mine too. And let's all hope that it is, once and for all, The End Of It. Let us know how it goes, and all the very best to you Xxxxx

Inbetweener

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