I just got my surgery time for the jpouch removal - Monday morning, 10/29 at 9 am-(ish), Cleveland Clinic.  Feeling anxious , for the surgery and especially the recovery, but so looking forward to it being over with.  My jpouch has been disconnected for a year now, but with the abscesses and fistulas and inflammation and and and, my surgeon said it was time to come out.  It's 25 years old so I'm totally OK with that, and doing fine with my stoma.  I'll try to keep this updated for those of you who might be going through this as well.  Wish me luck, see you on the other side ...

Original Post

Thank you everybody!  I appreciate all your positive notes of encouragement.  My surgeon is Dr. Tracy Hull at Cleveland, I've been seeing her for going on 7 yrs.  They have me drinking "Impact" 3 times/day for the last week.  It's an "advanced recovery immunonutrition drink", and I'll be on it for a few weeks afterwards as well.   They've also encouraged exercising, such as walking for preparation.   Pre-ops were all good, except for my hereditary, Factor XII deficiency which is really only an issue in the test tube and not in real life situations.   So, on paper, it looks like things are so-far-so-good.  

TE Marie, thanks for thinking of me.  I had the surgery Mon. morning, and was out Friday afternoon.  It went fairly well, although complicated by low blood pressure (normal for me) which cascaded into an AFIB situation, which sent me to ICU for a 1/2 day. 

My stoma was revised, unexpectedly, due to kinking underneath.  I'm OK with that so far, as the new one is round and should be easier to work with.  Surgeon was able to "scoop" out the shell of the big abscess, so that's gone.  The fistulas are still draining a bit - she stitched the backside muscles inside, and left the skin open for drainage.  Not much is coming out at all.  They took an ovary and tube out as everything was too stuck to mess around with for any length of time, and I am fine with that.  I currently still have my staples and a JP drain, they're coming out on Friday.   

Pain levels are pretty outrageous in the abdominal area, especially when up and about.  The backside isn't as bad as I expected, but bad enough.  But it is really early and I know from all your advice and others, that it's going to be a long haul.  This surgery is definitely not for the faint of heart.

I got a picture of the excised pouch - the pouch itself was actually not in bad shape, but the cuff was totally ulcerated and messed up - that's where the fistulas/abscesses arose from.  I'm willing to share the picture if anybody wants a look-see at an excised pouch!

I can provide more detailed information for anybody considering going through this as well, just let me know.  I'll also update how the recovery goes. 

 

Wow, you got a picture of it!  The pathology report on my excised j-pouch, after 6 months of being diverted, still showed the UC (Cuffitis) and Pouchitis.  I need to tell Mayo's that CC takes pictures for their patients so they need to up their game 

My ileo was changed the second time too and it sticks out further, which is good.

Sorry you are having so much pain. I was on narcotics for that so that is probably why I didn't think it was that bad.  It's great that your backside isn't in too much pain.  I imagine it's no fun with the drain. Will they stitch you up after everything quits draining?

I had them remove my ovaries when my colon removed.  I was already without a uterus and due to menapause they weren't working anymore. They were "narly" and had cysts according to the resident so it was a good thing I got rid of them. Missing some body parts we no longer need - like our appendix too saves us potential future worries.

Take care

Got home 2 days ago, a 10 day stay.  Nausea, cramping, inability to eat were the main issues.  Thought it was an ileus, but there was so much liquid coming out of the new stoma, I was considered an "abnormal presentation".  Eventually got a PICC line and TPN for 5-6 days, but they apparently didn't want me going home with it, so it was pulled.  They also did an upper endoscopy to look for any other reason for the pain, suspecting gastritis, and found a medium hiatal hernia (news to me), and mild inflammation.  So I'm on protonix and carafate for a few weeks.  (And ya, I'm 62, you go looking for things you're going to find them.)

My new stoma has become high output.  When I first left the hosp. after surgery, things were working well - getting thick, no where near 1200 cc, which is considered a "danger" zone.  Now, I'm eating more so sometimes it's thick, but it gets watered down immediately with the golden liquid coming out.  Maybe TMI, but it's just weird how it worked fine early on and not so much anymore.  They don't want me on imodium yet, as they think it might make my pain worse?

The pain levels are not too bad, but definitely still there in the gut.  My backside is doing pretty well, not much pain at all, and not much drainage anymore.   There's some extreme fatigue/weakness as well.  One of the fellows at the clinic told me yes I won't be feeling well for quite awhile, he said this is a HUGE operation, and ... his words ... I was butchered!  We got a laugh out of that.  A very honest man.

So now I guess it's a waiting game.  I need to find a way to stay hydrated and eat more, which is difficult since I'm not exactly hungry.  Any tips for food at this time are welcome!

I'm still glad I had the jpouch removed, even through all these setbacks.  My advice to those who are considering removal - do it now, while you're still young, as things do NOT get easier with age.

I also had problems with appetite after my J pouch was removed and lost 40 pounds.  I opted for a BCIR since I strongly did not want an ileostomy.  That procedure as well as the similar Kock pouch should be considered by those facing J pouch removal, especially if they have adverse feelings about getting a conventional ileostomy.  My PCP suggested that I drink a high calorie nutritional shake like Ensure.  In addition to that, I ate several extra small meals of foods that I could tolerate, including high protein foods such as chicken and pork.  Soups with a high calorie count also were helpful. Three months after returning home, my appetite had returned and my weight slowly began to increase.  With such a major operation, it takes time for your body to heal and adjust to your new plumbing.

n/a posted:

Got home 2 days ago, a 10 day stay.  Nausea, cramping, inability to eat were the main issues.  Thought it was an ileus, but there was so much liquid coming out of the new stoma, I was considered an "abnormal presentation".  Eventually got a PICC line and TPN for 5-6 days, but they apparently didn't want me going home with it, so it was pulled.  They also did an upper endoscopy to look for any other reason for the pain, suspecting gastritis, and found a medium hiatal hernia (news to me), and mild inflammation.  So I'm on protonix and carafate for a few weeks.  (And ya, I'm 62, you go looking for things you're going to find them.)

My new stoma has become high output.  When I first left the hosp. after surgery, things were working well - getting thick, no where near 1200 cc, which is considered a "danger" zone.  Now, I'm eating more so sometimes it's thick, but it gets watered down immediately with the golden liquid coming out.  Maybe TMI, but it's just weird how it worked fine early on and not so much anymore.  They don't want me on imodium yet, as they think it might make my pain worse?

The pain levels are not too bad, but definitely still there in the gut.  My backside is doing pretty well, not much pain at all, and not much drainage anymore.   There's some extreme fatigue/weakness as well.  One of the fellows at the clinic told me yes I won't be feeling well for quite awhile, he said this is a HUGE operation, and ... his words ... I was butchered!  We got a laugh out of that.  A very honest man.

So now I guess it's a waiting game.  I need to find a way to stay hydrated and eat more, which is difficult since I'm not exactly hungry.  Any tips for food at this time are welcome!

I'm still glad I had the jpouch removed, even through all these setbacks.  My advice to those who are considering removal - do it now, while you're still young, as things do NOT get easier with age.

Ya. I had mine removed at 59. I'm 62 now.

Not easy like you say. But this was my fourth open surgery and the easiest one out of them. I healed and adjusted amazingly fast. Now after 3 years I almost have all my weight back and feel a whole heck of alot better. I waited to long to get it out. Like anyone.i didn't want an end ileo the rest of my life. But I have not felt this good in decades. So I consider it a good trade off. And even after the short time I've had it I feel like I've had it all my life. Weird. I know. It's also amazing to be pain free and eat any damn thing I want at anytime and not worry about how painful it's gonna be coming out. I'm free from that. 

I do NOT MISS THAT AWFUL BURN!   

Good luck. 

Richard. 

You have been thru a tough time. Hopefully the worst is behind you. I'm glad your rear end isn't bothering you too much.

If you can't take something to slow down your output then I don't see how you can avoid dehydration. I had a crazy loop ileostomy after my colonectomy and was in the hospital 16 days. My removal surgery was at the Mayo Clinic and I was taking Imodium and Metamucil. If you can't take Imodium can you at least do the Metamucil?  The nurses instructed me to take Imodium before I ate, an appetizer, and do Metamucil after I ate, like dessert. They mixed the Metamucil in a little bit of applesauce.  Plus I wasn't to drink a lot of water with the Metamucil.

There's certain foods that thicken the output to, like bananas, rice, applesauce etc. There's the not as healthy things like marshmallows too.

 

Just got a hold of doc and will start imodium today.  Fingers crossed it does the trick.  I'm probably a tad dehydrated ... but I'm going to do a plug again for dripdrop, I think that stuff is amazing.   Bill, dropping 40 pounds, wow.  I went into the hospital at 119, and am at 107 right now.   It's very tiring.  But then, it's only been 3 weeks since surgery and as you all have said, it takes time.  I'm drinking "impact" once a day, it's a high protein drink that the Cleve. Clinic recommends taking before and after surgery, and will eat more of the thickening foods that you listed, TEMarie.   Feeling a bit more positive - thanks you guys.

If you are taking OTC Imodium/Generic I suggest you bite the little pills in half. In the beginning when my body was getting use to the new experience I noticed parts of them coming out in my output so I break them in half - they are tiny so biting worked out better. If you are getting the prescription for Loperamide you don't need to worry as they are powder in capsules. 

I have a high out put but I have never used anything to slow it down.  It slows in its own.  Over time I've noticed that. But I do drink alot of water to compensate.  I have a bottle of water with or by me all the time. Before all this I hardly ever drank water. 

But. Do what your Doc says. We are all different. 

Richard  

One of the problems with having a lot of watery output is if you aren't on top of it the output breaks down the appliance seal and you have to change your appliance more. At least that's what happens in my case.

I drink water all day and night long and use electrolytes to compensate for the loss of so much fluid thru my ileo.  I don't expect to have thick output and don't use as much Imodium as some do.  I change my appliance every other day so some break down of the seal is tolerable. (I have a problem fit so need to change it so often.)

TE Marie, my problem now as well.  I had been able to go 3-4-5 days between changes with stoma #1, but not now.  Now, it's 2 days, and that's probably pushing it.  The watery output indeed wreaks havoc with the seal/ring.  It's a bummer, because I'm also relearning how to work with the new stoma and finding the right gear for it.

I've only been on imodium for a day, but what a difference, already.  I went from 2210 ml output on Sunday, to 1325 yesterday, and expect even less today.  I think I can keep up with that by drinking enough liquids/electrolytes.  

Unless you have a recessed stoma I would not use a ring. 

Less is best. Or worth a try. I tried the ring and had to immediately change. 

All I use is paste on the creases. (cut scars). I put the barrier on and break a q-tip in half and gently push the barrier down around the stoma. Then I go sit with a heating pad on the whole thing for ten minutes to get a good stick and seal. I could go a week (I don't) without changing. And I have a watery output.  The only time I broken the seal is when it's my own fault. Or I let the bag fill past the fill mark (I know. No fill mark. General rule is empty at 1/3rd)  but if I go past that pressure from bending or something will break the seal. 

Anyway. 

The less you can get away with using while applying the barrier the better. I know that sounds simple and I know it's more difficult for some to do it that way because of their situations.  

I just found the more I added the more problems cropped up. 

Good luck. 

Richard  

N/A,

I'm glad your volume is down  Maybe you can stop measuring it soon.

Trioral world health organization formula packets are what I use in the morning and NUUN tablets that flavor water with electrolytes when I get tired of drinking water. I bought Drip drop once and it's good but more expensive and didn't taste better to me. The Trioral just makes the water taste a little like salt and I use half a packet daily unless I'm really dehydrated.  1 packet with 32 oz of water daily is what the world health organization formula recommends for people in 3rd world countries. I looked into buying the ingredients and making a WHO. I figure the money I save by not drinking anything else more than pays for the mix. Just suggestions in case you want to try or get more variety in what you drink. 

Thanks, temarie, the trioral is in my amazon cart. It looks like good stuff.  Output was down to 655 yesterday woohoo!  Richard, "less is best" seems to be cleveland clinic's new mantra now, too.  The ring does even a big dip under my stoma, so I feel I have to stick with it.  That's great that you can go minimal, even with high output.  

If you need the ring I don't blame you.  You of course know you will find what works and doesn't.  It took me awhile.  That's for sure. 

All I use is a little paste for caution and barrier spray. I'm fortunate that's all I need. I worried myself sick prior to gettin one. And all for nothing.  I just remember trying the ring instead of paste and it was a mess!  A wafer comes off pretty easy after 3-4 days but to take it off only after a few hours. Ugh. I thought I was gonna rip my skin off! I found a spray releaser after that. Worth it's weight in gold to me. Wafers drop right off with it. 

Richard  

Wow You're on the other side ! Well done ! I'm happy to hear your relieved, even with  the setbacks. I'm still trying  to harness the courage to do it, cuffitis is wearing me out and keeping me up at night and uncomfortable in the day. I'm encouraged by your story and thanks for sharing the tips, ill make a note of them for my journey ahead  

Thanks Saff.  I'm very, very glad it's "behind" me - as you can imagine - and hope there are no more surprises.  If not, I feel it all went pretty well.  If you do go ahead with the surgery, I hope you keep us updated and that it goes smoothly.  Until then, I hope you can manage your discomfort and get some sleep!

TE Marie posted:

Wow, you got a picture of it!  The pathology report on my excised j-pouch, after 6 months of being diverted, still showed the UC (Cuffitis) and Pouchitis.  I need to tell Mayo's that CC takes pictures for their patients so they need to up their game 

My ileo was changed the second time too and it sticks out further, which is good.

Sorry you are having so much pain. I was on narcotics for that so that is probably why I didn't think it was that bad.  It's great that your backside isn't in too much pain.  I imagine it's no fun with the drain. Will they stitch you up after everything quits draining?

I had them remove my ovaries when my colon removed.  I was already without a uterus and due to menapause they weren't working anymore. They were "narly" and had cysts according to the resident so it was a good thing I got rid of them. Missing some body parts we no longer need - like our appendix too saves us potential future worries.

Take care

pathology will ALWAYS show some type of inflammation in the pouch,, fyi

Thought I'd update -- today it is 10 weeks out from my jpouch removal.  Things have been improving steadily, and I think I'm doing pretty well at this point.

My abdominal incision opened up in one area just before Christmas, so, under the advisement of my WOCN, I've been packing that with silver alginate, increasing my protein intake, and adding 2 Juven packets per day to my diet.  Had an appt. w/my GP today, and he thought it was looking nearly healed.   He also thought my backside looked "great" as well.  I've been using anasept and aquaphor to treat the redness and soreness, apparently it's helped the healing process, along with the additional protein and Juven.  I still sit on a bed pillow or waffle pillow whenever possible and am careful with bending over, etc.

My surgical pain is for the most part ... gone.  I have twangs now and then in the area of my "new" stoma, and here and there, and once in a while in the backside, but otherwise not bad at all.

A few hiccups with the new stoma, in that I think I'm having a reaction to the tape on my convatec moldables , so am trying to work that out.  But the new stoma is longer than the original, so it drains much more nicely into the bag.  I'm taking imodium before meals and bedtime to keep the higher output under control, and that seems to be working pretty well.

I still fatigue quite easily, and was tested for B12 today.  Back to my 3-1/2 mile walks and doing mostly what I did before, except am very careful yet with lifting and moving heavy objects, just really don't want to risk a hernia.

Very glad I had this done and that it's behind me.  The permanence of an ostomy was a little more difficult to come to terms with emotionally than I thought it would be, but I'm almost there.  It's the little things - no drainage (dry underpants!  no panty liners/pads!), no fistulas, no setons, no rush to the bathroom, no pain on pooping, no fevers, and I could go on, that help me get my head straight on this.

Having the pouch removed after 25 yrs was a really, really difficult decision - I considered doing it for about 10 yrs., and of course, wish I had done it earlier.    I was ever so fortunate to have a top notch surgeon and the best husband/support I could ever hope for throughout this ordeal.  And I'd also like to thank all of you for your support - really, knowing you were all out here gave me a feeling of comfort, reassurance, and knowledge of what to expect.

If anyone who is considering removal has any questions or wish to talk further about it, please feel free to PM me.

Hi NA

Gosh ... I am new to this group. Loved your “post!” I have had my J-pouch for 30 years. I am having more problems these days. Bummer. But you have given me hope! How did you know it “was time?” My husband and I are thinking of doing a pretty big trip next October. ( It will be our 50th wedding anniversary.) I am not sure what to do...I would REALLY like to hold off until after our trip! But do I want to be out in the middle of nowhere and have issues? Thank you for listening! I hope you are feeling stronger everyday! And,  I am thinking about you!

Burd

 

 

Its great to hear your progress is going good.  I am sure it is alot to deal with and not fast recovery.  I have a J pouch for 5 years and already my surgeon and GI dr r suggesting revision or removal.  I am going to have hernia fixed and he said I should think about then while he is opening me up.  I just don't know.  How many times would change bag and would it be the same amount of time as normal way.  I had trouble with stoma, alway sore and so much output.  Maybe that was because of the transition.  Not sure but they said my entire colon was diseased and have to remove all except a small end and that is what gives me all my pain, burning, bathroom time.  I feel my life is the bathroom.  When u dream about  finding where the bathroom is it is starting to be a nightmare.  

I do rejoice when I have good days and take advantage of the time.  But I think I have more bad than good and just can't live life. I have a window of time I know I need to be near a bathroom and want to be at home.  I can't take vacations or any overnight trip.  I always  watch what I eat and depending I get so much gas I don't even want to be around people.  So much for relationships.   

Great to hear your update N/A. Good to hear your feeling stronger. My decision point is looming again and I have my surgeon appointment lined up in late Jan - so in that intense mode again of wondering whether I can face it. Still erring towards doing it. Feel like I need to read over every post about pouch removal and any literature I can find again... but know nothing will give me the certainty I am seeking! 

NA,

Nice to hear you are doing better!  I agree with you about the mental side of having a new stoma. I've had to work on that part. I invested in ostomy underwear, invested as it's expensive, and it helps a lot. Prior to that I bought bag covers but the underwear is better. It keeps material in-between the bag and skin. 

EVERYONE contemplating removal there are other threads in here where we have discussed our decision process and surgery outcomes. Also if you have any questions please ask. Removal surgery is major.  Nothing is too small to ask about. Sometimes its the little things that hold us back. 

 

Thanks AIMC.  And you're so right about asking questions.  There are no questions too small to feel embarrassed to ask about if it's something that is causing one any doubt or concern.  

Burd, welcome to the group!  I hope you and your doctors can come up with a good plan and date if you go for removal.  There really wasn't one thing that pushed me to pull the trigger on removal, I'd had problems with the pouch almost from the get-go, even though I had good periods of time with it as well.  Eventually, too many fistulas, abscesses, EUAs, cuffitis, drainage/leakage, etc.  My surgeon finally said about a year ago that the pouch "had to go" due to the latest abscess being so huge with a fistula that wrapped around the pouch.

TF, I'm sorry you're having these problems.  I would point out that if you suffered with your ostomy due to it being a loop ostomy, the end ostomy, which is given when a pouch removed, is easier to care for.  I certainly wouldn't try to influence anyone as to whether to keep or remove a pouch, but I personally wish I had had it taken care of sooner.  An ileostomy is by no means easy to get used to, it does take time to come to terms with it, but in my case, it's been great compared to all the issues I had with the pouch.  

And for sure, TE Marie, there is a lot of information out here from others who have gone through this process - I scoured it all before and after my surgery, and got so much helpful information from you all.  Your posts were especially helpful, TEM.  PS the ostomy wraps are great, too!

I do have a few suggestions for those who eventually do decide to do a removal.  Talk extensively with your surgeon on what to expect, both in the hospital and afterwards.  Since we are all so different, it's not easy for the docs to tell us specifically what will happen, but they can give you an idea of what to expect, and when to contact them.  Things happened at home that I didn't expect, didn't know if they were normal, didn't know if they'd lead to something worse, etc., and that was really difficult to deal with.    2)  try to build yourself up before the surgery - walk, do some aerobic exercise, up your protein, etc.  3)  and  your doc and/or do some research on Juven - it's a "therapeutic nutrition powder for wound healing", which I learned about and used after my incision opened up.  It's available on-line or at Walgreens.   This stuff works!   Also be prepared to up your protein intake after surgery, I try to increase my protein with meals, and supplement with a protein drink during the day;  4)  ask about how your bottom will be closed up - stitches inside?  An opening for drainage?   I had these and it was fairly "comfortable".  I understand some have staples?  Can't imagine that ...  5)  Have support available to you as needed.   It's difficult, and not advised, to be bending over for the first few weeks for even simple things like pulling on socks.  6)  And always remember this:

Recovery — Expectations vs. Reality | Out of the Cocoon

 

N/A Your “post” was so awesome! Thank you! My husband and I just booked a cruise for November...to celebrate our 50th wedding anniversary. I am REALLY hoping I can hold out until after our trip! But pretty concerned about doing walking tours, etc. Perhaps I will be on Cipro, to help? I’ll be in touch later. Thank you, everyone for just ALL the great tips and support! 

N/A - love your visual aid, explains a lot of things perfectly!

BURD - I hope you make that cruise and you are right definitely to take any medications you think you might need and antibiotics can help with other problems that might pop up.  We just celebrated our 43rd anniversary and are finally planning the trip I've been waiting to go on for 13 years.  I got too sick with my UC and so on.  As far as walking I suggest you take taxis/uber whenever possible.  Don't know how that works with cruises... just know that's what we are going to have to do because of my peripheral neuropathy.   

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