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 ...
Good luck, sorry to hear that your jpouch has come to an end.
I wish you a speedy recovery.
All the best to you pouch buddy!!! Keep us posted.
Good luck to you. Who is the surgeon at the Cleveland clinic?
Wishing you all the best for a relatively painless recovery and encouragement for the best life you can live post op. Keep us posted.
Life will be so much better.
I'm at the 3 year mark of my removal and having my end ileo. It works and it works amazing well.
I wish you the same.
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.
Good luck. I hope you have a trouble free time.
Good luck. I hope you have a trouble free time.
Wow 25 yrs is a good run. I will keep u in prayer for a fast recovery.
I hope all went well and you are able to go home sooner than later!
I also hope all went well
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.
Ugh, back in the hospital with probable ileus. Don't feel well at all...
Oh man, how it starts working properly and you get out soon.
Wishing you a bag full of gas. Probably the ONLY time I would wish that on anyone!
I hope you are out and home again soon.
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.
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!
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.
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.
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.
I agree Richard. I've tried without and it's worse. I use slim seals which are half the thickness as regular ones plus I have to fill in where there is a dip next to the stoma.
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.
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:
My ileo was changed the second time too and it sticks out further, which is good.
pathology will ALWAYS show some type of inflammation in the pouch,, fyi
did you get your back end closed up as well?
It didn't just show up as inflammation I should have explained that better. They didn't take a picture but gave me graphic verbal details.
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.
N/A so glad to hear you are doing so well. Hope you continue to heal at your remarkablely good pace. Just remember if you have problems to ask for help. Both here and your medical community. Good luck