J-Pouch ForumsOstomy & Skin
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J-Pouch ForumsOstomy & Skin
Yikes! sounds like something is going on! Hope he can figure things out for you. I would have this taken care of before your connected. Prayers for you! LJK [ more ]
Is there any new info from anyone on this? I’m having the same issues and have a scope next week. I’m in a temp end ostomy and nothing is connected to my pouch so I shouldn’t be having this pus/blood coming out a ton my Dr said. [ more ]
I'm waiting for a call from my GP to get a referral to a GI. Think that's the route I need to go. Unfortunately my surgeon is not in my city, and getting an appointment can take a very long time. As I've been well for quite a while, officially I'm discharged... But I think if I see the GI here, he/she will simply bump me up to my surgeon, which means a faster appointment time. Gotta know how to work the system! Hoping something else works other than surgery. Really don't want to do that... [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
Al, I have cut down on the smoking to about 8 cigarettes/week...so that is good...doing my breathing, Pilates and yoga about 5 days/week and I have gently started walking again (mindful walking... I feel like a 1yr old taking my first tentative steps...slowly and very carefully) this accident has aged me dramatically. I finally admitted to my PT that I am scared to go outside...scared to slip and fall...2 years of hell and 2 accidents have gotten the best of me... I am no longer bulletproof. [ more ]
If you're going to smoke I would try vaping? not nicotine, perhaps CBD? Is that legal In the wine country? If your healing, I would recommend yoga, meditation and trace? I quit my job and starting practicing more of these eastern medicines and for the most part - l like it! and its totally free [ more ]
Speedy recovery my friend! You will heal. [ more ]
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J-Pouch ForumsOstomy & Skin
I know this is a late reply, but when I had my osomy the stealth belt was my saviour. If you look it up you should find the website you can order them from. They are a little pricey but I had my ostomy for 2 years and only ever needed one. They keep the bag covered, and you can actually empty it when wearing the stealth belt thanks to a zipper pocket! It made sex feel a lot more comfortable and it also opened up a lot more clothing opportunities for me! I seriously recommend looking into it. [ more ]
Great ideas Sharon. I am digging out my old swimming suit and sewing Machine! [ more ]
Although I haven't had an ostomy in 54ys I have a k pouch that occasionally needs to be hooked up (and the stoma covered for certain activities ) I am handy with a needle and thread as well as having a wide imagination when it comes to creating clothing that works for these occasions. If you have a bathing suit that is rather thin, a nice fabric but a bit 'used' or no longer adequate for your body, don't throw it out...cut out the crotch from the bottom, fold it under and hem it to make a... [ more ]
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J-Pouch ForumsOstomy & Skin
I feel the same as TE Marie and Holly HM. I'm feeling so much better, after 24 yrs of probs. w/the pouch and putting off removal - I've had pouchitis, severe cuffitis, abscesses, fistulas, and a dx change from UC to Crohn's. I still have my pouch, but have a permanent ileostomy. The pouch is going to be removed this year at some point. I have a few dietary restrictions, but it's more out of fear of the unknown and learning, since I've only had my ileostomy 6 months. I do eat salads, drink... [ more ]
the k pouch is another option. check out the k pouch korner for more info. [ more ]
After 20 years of having a j-pouch, I gave up and had it removed. I was having discharge that was very acidic and and kept me sore and hurting a lot. I am so glad I got a permanent ilio. I am not having the problems I had when I had the temporary iliostomy. Sure, I have problems ever so often but my life is better without the j-pouch and the IPD. (Intestinal pouch disease). I do have to be careful about what I eat. No salad or other fibrous foods but even with that it was so worth it to me [ more ]
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J-Pouch ForumsOstomy & Skin
My son has his jpouch and it was working great for about 18 months after takedown. Now he has chronic antibiotic resistant pouchitis as well as some separation at the anastomosis. He started entyvio for the pouchitis and the surgeons will do some more tests to see if they can do an advancement to fix the anastomosis. Then he can decide if he wants to fix it, leave it, or remove it. But right now he needs to focus on eating and regaining his strength. Poor kid has been through hell. He is... [ more ]
I usually have a little rectal discharge every time I sit on the toilet to empty my bag. I always have tissues in my underwear because who knows when some extra discharge will happen. The discharge was very bothersome to me but now I have just become accustomed to it. As was mentioned before, it is not all bad because I feel sick when it lessens or stops (mostly b/c of antibiotic use for other reasons) I haven’t been able to gain weight with my loop ileo although I can’t imagine what would... [ more ]
I found that bathing the rear end in warm water encoraged the anus to relax meaning that I was able to more thoroughly empty the mucos. This eventually reduced to 2 times a day (one before bed and once when I got up). Hth [ more ]
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J-Pouch ForumsOstomy & Skin
Hi Tara! I too had a better recovery from my pouch excision than the original colectomy surgery, but even so, this was a big surgery and recovery. My pouch excision was not laparoscopic, so it was a full 8 weeks recovery in my case. I was pretty much good at 6 weeks, but I gave myself the full 8 so I was sure to be 100%. My abdominal scar took almost 6 weeks to stop oozing . I was on prescription pain pills for 4 weeks, so no driving. Yes, my barbie butt hurt and I pretty much only sat... [ more ]
Tara, I think the permanent ileo is light years better than my temp one was. I just saw this so am wondering if you have proceeded with the surgery or not. I had a much better recovery from the removal surgery than from the colonectomy/j-pouch creation surgery. [ more ]
thanks Rachel - I love my ostomy, totally ready for it to be permanent...not sure why this surgery of all of them is freaking me out so much. I guess I'm having a hard time imagining the recovery being easy - i.e., how can it heal when you're sitting on it, etc.....so thanks for your response, I appreciate it. [ more ]
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J-Pouch ForumsOstomy & Skin
I’ll private message both of you with my address and I can Venmo or PayPal the shipping fees once you let me know how much. Xx A [ more ]
I have non-used supplies to donate, BUT can't afford shipping chrgs. So, how to proceed? [ more ]
Where do I send the suppplies? I have extra bags and wafers I don’t use [ more ]
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J-Pouch ForumsOstomy & Skin
My insurance quit covering loperamide and forced me to either pay for it myself or take the OTC imodium. I bite them in half to aid in their digesting as they were not fully dissolving. The loperamile was in capsule form and I think worked better. [ more ]
I know especially Lomotil that is the only one that my body responds to.. [ more ]
The price of OTC generic Imodium has gone up by 3 times since the last time I purchased it [ more ]
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J-Pouch ForumsOstomy & Skin
I buy underwear for my appliance from Ostomy Secrets that is a Convatec Company. The are pricey but not too bad when they go on sale. They go on sale a lot. The just had a St. Patrick's day sale of 35% off. They have a shelf inside that holds the bag in place. There are also bag "covers" that I've purchased from several vendors on Etsy. If anyone else knows of anywhere that sells specific Stoma underwear let us know. [ more ]
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ALso check out this underwear.. the high waisted ones will help keep everything snug and not noisy. https://www.shethinx.com/ [ more ]
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J-Pouch ForumsOstomy & Skin
I've had several blockages which are the most painful thing I've ever experienced. Some have passed on their own and a few have required hospitalization - NG tube, pain meds, vomitting and near surgery. So I've decided that from now on, should it ever happen again, as soon as I get that first wave of blockage pain to take myself right to the hospital instead of being an emergency patient. Of course, I now eat so carefully by eliminating roughage almost completely. My plan is to never have a... [ more ]
TE, if you do try it, soak it very well before cooking and just use a smattering of the quinoa among the rest of the food. I'm still a little spooked and just threw out the leftovers. My husband didn't even want to eat it! [ more ]
Thanks for the heads up. I was thinking about trying it..... I'm glad it passed [ more ]
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J-Pouch ForumsOstomy & Skin
I agree. I had my pouch since 2010, I finally went to the doctor and he prescribed Questran. It’s like night and day!! I just wish I would of went sooner. My last doctor I had moved and I thought I just had to suffer with burning output. This helped so much I feel so much better!!! [ more ]
Oh my goodness... It is like night and day I just can't thank God enough for scientists that create medications that help people like us!!! The medicine is awesome ☺️ [ more ]
Cindy, how's it working? Hope well! [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
Unfortunately I have to cut my wafer as my ileo shape is more oval. I just started putting the ring on my skin vs putting it on the appliance and then applying the wafer ring and all. This has really helped my skin under the wafer plus I've been getting longer wear time. One week is a great accomplishment in wear time! Thanks for your post and links Cailfornication. [ more ]
I use a precut wafer also. I found out after using your own cut and precut that precut has less problems. I can't cut a circle worth a nickel. Lol. You can order some to your size precut. Some places will precut for you.. Or you can buy a cutter that cuts to your size and do it yourself. No scissors. [ more ]
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J-Pouch ForumsOstomy & Skin
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The Mayo Clinic site says this happens with auto-immune diseases including IBD. Is that what your doctors said? I hope it clears up soon and well. [ more ]
Hello, all. Sorry again for the delay! Simply too much going on. It turns out I have a pyoderma, so am being treated with topical steroids and such. It had actually closed up last week so the doc dropped the steroids to every other day, but this past week -- of course, while on holiday! -- it opened up again. So back to the daily regimen, and phoning the doc on Monday for another appointment. Anyone else deal with one of these? Gin [ more ]
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J-Pouch ForumsOstomy & Skin
It depends on the position on you abdomen and how much fat/flab you have. For example my abdomen is flabby so I need to wear a concave fitting appliance. I had a 2 piece convatec that fit ok but found a one piece Hollister appliance that works better. As people are suggesting try out every brand you can. They normally want you to describe what your abdomen looks like after surgery. So I suggest you use what the stoma nurse advises first and then try other brands. They do vary quite a bit. I... [ more ]
When I had my temporary ostomy, the ostomy nurse signed me up with a few companies and they sent me supplies to try. I was most comfortable wearing, and 100% impressed with, Coloplast. All Coloplast bags are made of a new type of material for ostomy bags, a type of fabric, instead of plastic. You don't feel like you are wearing a medical appliance, but almost as if you are wearing just another piece of clothing. That is Coloplast's thinking and that's what they produced. The fabric is soft... [ more ]
It's individual. Get samples now before he gets it. The hospital will have one brand. And then when you get home you can try others . Every manufacturer will send you a few samples if you ask I use a two peice drainage from convetec. Has a velcro closure. Just let him heal well first. Then try different products. Richard. [ more ]
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J-Pouch ForumsOstomy & Skin
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Oh how I hate that we are dealing with this. I really was hoping that the Cholestyram powder I was recently prescribed was going to be the final medication or anything else that I would need to take for this issue because it helped so much.. it was like night and day!! However, I had an allergic reaction to it, my lips blistered, felt hot and very dry. My Dr. prescribed another medication that is supposed to be comparable but does nothing for me. The Calmoseptine does calm down the burning... [ more ]
This has been an issue for me too ever since takedown 7 years ago. Here is how I manage it. I use Calmoseptine after every BM. I have tried all fibers and the one that works best for me is Heather's Tummy Fiber (1 teaspoon in the morning.). At times I use Recticare cream (Amazon) which is a strong lidocaine type cream. I also don't eat grains. On occasion I do and that seems to make it worse. If I notice the area is red and inflamed looking I use Monistat cream. If it still isn't under... [ more ]
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J-Pouch ForumsOstomy & Skin
A j-pouch scope is a simple procedure so I am wondering why your doctor thinks it isn't necessary. There could be other things wrong besides cuffitis. It might save you from having 2 surgeries instead of just 1. Your rheumy has a good point about seeing if these treatments clear all up. [ more ]
Hey friends, so I've seen two specialists since we spoke - bowel surgeon suggests we could try 'pouch advancement' (to remove rectal cuff..) possible cause of problem. I do have some blood stained discharge from pouch. He didn't think it was worth doing a scope as the management options would remain the same - he doesn't think that any of the available treatment for diversion colitis/ cuffitis are currently effective. So removal of cuff (trial 1) is his favoured option. If that doesn't help... [ more ]
Please let us know how your appt. goes. [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
I think it depends on the type/manufacturer. I went from one manufacturer which I had in the hospital, to another and it changed my method. I went on line and watched a short video by the new manufacturer (coloplast) . It was simple just wiping the end with toilet paper, no rinsing, haven't changed basic method since. [ more ]
Thank you T. E. Long answers are good. It is a simple question. But getting it out there with some answers is important. All input is appreciated. Richard. [ more ]
I rinse it out with water everytime I empty. Then I used TP to dry the end out before I fold it up. My ourout varies in thickness during the day from thick to applesause consistency. When at home I use a red solo cup to pour in the water. Be careful not to pour too much in as it will go uo to the top of the bag and get water into the wafer. When away from home I have a little bottle of water in with my supply bag. I carry some TP folded in there incase I get stuck emptying in a public... [ more ]
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J-Pouch ForumsOstomy & Skin
Hi Heather, dessicated coconut is fine for me, its the stringy fruits / veg like pithy citrus, stringy greens like asian greens, celery, and raw apples and fruits with lots of skin that cause trouble for me. [ more ]
Thanks for your replies, I used to eat coconut macaroons too(ex-Londoner), thats what I thought could happen as I'd heard from others in the past that they had probs with certain foods. I could never eat pith on fruit with a Jpouch for same reason, used to get stuck and took ages to pass and caused alot of discomfort, so I think i'll just give dessicated coconut a miss. Too chicken to try it as have had alot of blockages in the past and they were awful [ more ]
When I had my ileostomy I ate a coconut macaroon (a dessicated coconut type not the fancy brightly coloured ones) on one occasion and remember it causing a fair bit of discomfort as it went through - had a hot bath to help things along and it came out of the stoma in big lumps of the stuff [ more ]
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J-Pouch ForumsOstomy & Skin
Hi! I have a diverted J pouch with a loop ileostomy since 10/15. I have just been dragging my feet about the final step/decision which will most likely be j pouch removal/permanent ileo. My j pouch itself wasn't my problem per se, but 2 nasty fistulas in my rectal area led to my diversion. I have some sort of rectal discharge every day which is good and bad. When the leakage stops, I don't feel well (abdominal and rectal area pressure) and then I have a lot of discharge a few days later and... [ more ]
Thanks SAFF. I am doing a lot better without my j-pouch. I had it removed 6 months after I had it diverted to an end ileo. The pathology report showed chronic pouchitis was still there. It hadn't gone away while it wasn't being used. I should have done as my surgeon wanted and had it removed when it was diverted. It would have saved me a surgery! [ more ]
Thank you for your replies! My surgeon wanted to leave it in because it was so inflamed. He wanted to give it time to heal. From your replies, I think I had a little cuffitis, but it is gone now (fingers crossed). I am seeing my doctor in August and will have her take a look. I'm hoping suppositories will help if it continues to be an issue. Antibiotics haven't done much for me in the past, and I worry about being on them. I hope everyone continues to have good health! [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
Hi, I had an Ostomy from March till June 2017. Yes there is a scheme under the Australian Federal Gov where you pay $55 membership and receive all appliances and supplies etc free. You deal directly with The Stoma Association from then on not the nurses for supplies. Delivery cost is extra. There are restrictions on quantities per month but I never ran out. If you need their number let me know and I'll get it for you. [ more ]
Hi, I live on the Gold Coast and after nearly 30 years my jpouch decided to stop working so now back to the illeostomy In Australia we have a stoma scheme under the Federal Government - assuming it hasn't changed you pay a yearly membership, I think it's summit like $100 and the stoma nurse from where it was all done gives you your order Hope this helps [ more ]
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J-Pouch ForumsOstomy & Skin
I agree that these prices are exorbitant. Perhaps they know we have so few options? I went to Kmart and bought larger sized stretchy underwear. I wear my bag at an angle, so they keep everything covered and held in place nicely. $12.99 for three pairs! [ more ]
No kidding. 30 bucks for a peice of spandex is ridiculous. Even on sale 22 is too much. 10 bucks at the most. Seems like we are taken advantage of. So I will try a five dollar tube top next time. I don't use the pocket anyways. Richard. [ more ]
Ostomy secrets has sales all the time and they are still expensive. I wait for the sales. Thanks for the Canadian website Winterberry. Boo hoo their prices are just as high as Ostomy Secrets. [ more ]
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J-Pouch ForumsOstomy & Skin
I had the same thing and it looks horrible. I used the "crusting" technique. On dry skin put on stoma powder then put on Barrier film. I use Cavilon no sting barrier. Then repeat this on the problem area. (I thought you might have these on hand." [ more ]
I had something like this happen when I had my loop illeostomy. My doctor used some kind of medical glue and bunched the skin around the stoma to adhere it after surgery. He didn't use stitches like I had for my end illeostomy. I was home a week and a half and the skin separated from the stoma so you could kind I'd see inside. I panicked and sent a pic to my wound nurse. Every time I changed my appliance it seemed worse. She called and I went in. She told me not to panick and it would heal... [ more ]
I think what Chute means by the way I'm reading into it is not necessarily the shrinking of the stoma but where the stoma is supposed to be attached to the skin. If I'm wrong. And I usually am way off. Lol. My stoma never goes so far in. It protrudes probably close to half an inch. Which I am very thankful for. Works like a charm. And I do smush that little bugger all the time. But it functions well. Further out the better. Flush stoma are difficult. It has not healed yet it doesn't seem. [ more ]
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J-Pouch ForumsOstomy & Skin
The operation removing j-pouches includes removal of the rectal stump. Are you from the U.S.? If so please get a second opinion. Let me know and I can give you my Mayo Clinic surgeon's contact info. She performed the removal surgery, that included the rectal stump. I didn't do any better in 2 piece appliances. I have fibromyalgia and could not stand to wear belts and that might have helped on one or 2 pieces. Most people change 2 times a week. That's my goal. [ more ]
Thats what I'm gonna ask the specialist, I want the rectal stump and disconnected J pouch out but don't know if he will agree. Also have a groin hernia that was just about to be repaired until the emergency illeostomy put that back My stoma nurse said she would show me all the stuff available soon because I want to go on a two piece that doesn't need changing every other day. I've heard they last about 4 days Hopefully the specialist can answer everything, he told me I shouldn't get stuff... [ more ]
Heather, I had similar surgery first. She worked on my scarring and adhesions any also diverted from going into the j-pouch out through a permanent ileo. 6 months later she took out my j-pouch and the rectal stump out. That surgery was a year ago. So for 18 months I have been using ileo supplies. I have to change every other day in unless it decides to blow before then. Every time I try to go an extra day I regret it. I am in a one piece Hollister and have to build up half of it with a heavy... [ more ]
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J-Pouch ForumsOstomy & Skin
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Those grands are motivation Richard. Thanks for the Picture [ more ]
Thank you. She was more relaxed than I. She just sat on my lap and started eating chips out of a bowl I had and drank her milk. For about 15 minutes. No squirming around. Just like her couch potato grandpa. Lol. [ more ]
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J-Pouch ForumsOstomy & Skin
I am now self cathetorizing before bed nightly. They did an ultrasound after I urinated and there was too much urine left in my bladder. They are not sure of the cause. I think it is due to several of my medications that list urine retention as a potential side effect. One of them is Loperamide, prescription Imodium. At least the specialist is not trying to add a prescription. [ more ]
Good list Sharon. Unfortunately I know and or do most of what you write about. I too had them more when younger but the problem now is more functional It's been almost 2 months without an infection so am hoping it is under control now. I am still using up my vsl#3 too. I am spreading one daily packet over many days as I am no longer on antibiotics for my former j-pouch. I discovered that several of my medications can contribute to the problem so ladies read all of the warnings on your ... [ more ]
I don't get them very often...I used to when I was much younger but I had a great obs/gyn who gave me a few basic rules...only cotton undies, no bubble baths or soap in the tube or any type of detergent while I am in the water (I either wash first then take a bath or the other way around...not even shampoo in the water...it will change the PH level in the water and send me strait into a UTI); I use only sea salt with a few drops of essential oils if I want to perfume my tub, change undies... [ more ]
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J-Pouch ForumsOstomy & Skin
I like to wash it without it on. It just feels good and it's a safe place to be if it starts acting up. I clean all the skin where the barrier sticks so by the time I get out and dried off all I have to do is apply it. Convetec has a tape around it that if it gets wet it's just not the same. Best just to shower with it off. I'm comfortable with it. Richard. [ more ]
I have all sorts of hydrating fluid additives etc. The WHO like packets off of amazon.com and another liquid concentrate work well. NUUN tablets are fantastic. When I get the IV fluid my electrolytes always test on the low side of normal so you can need IV fluids and normal range electrolytes. I bought a stoma cup. I put it on with an ostomy belt. This is placed over the stoma to catch any output that might happen while getting your appliance ready. I put toilet paper or part of a paper... [ more ]
Great progress Richard woohoo!! How come you don't just shower with the appliance on and change it after the shower? [ more ]
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J-Pouch ForumsOstomy & Skin
Thank you Lambiepie. I have an apple a day in my morning protein smoothie which also includes blueberries, banana and other frozen fruits and carrots and kale for 6 servings of fruits/veggies. I still need to take 8 Loperamide and 2 servings of Metamucil mixed with applesauce to keep everything coming out in a good consistency. 8 months since my j-pouch removal and things have calmed down. It has been a long process. I think my small intestines had to have time to adjust to the new waste... [ more ]
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J-Pouch ForumsOstomy & Skin
Hi BadPlumbing I used to use a wafer, because that was how I was taught. My stoma has an aperture which release output directly onto the skin, so I need to get the opening of the bag as close as I can to under that point, to minimise tracking under the adhesive part of the bag. My stoma nurse then recommended that I stop using a wafer, because that is just another layer that raises the opening of the bag away from the aperture. Since I did this, my skin irritations have reduced dramatically,... [ more ]
I tried this bc my bag ended up with a little hole and was leaking. It was a mess for me. So I suspect it does take practice. I thought (later) about laying down on my back if I ever have to do it again. [ more ]
I have, after a shower when planning on going somewhere. It makes me feel more cleaner and I can tell my bag doesn't smell as bad. [ more ]
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J-Pouch ForumsOstomy & Skin
I burp mine from the bottom. The filter things are just on some I have. I am trying to use the first in first used method. I had stool coming out of the filter area onto my underwear for around a week and had enough of it. I have covered it ever since. It also stunk when air did make it out but you are right Richard, they don't really work. [ more ]
Yeah, I know, Richard, I've gotten no benefit from them. I understand that they work better for colostomies, which are drier. I used the stick on ostovents for a while, until they occasionally started peeling off when I least expected it. That made me nervous, so I stopped. Now I just excuse myself from the room, open the bottom of my bag and let the air out. Or warn my family in the car that I'm going to do that. No worse than what they do with their coloned bodies! [ more ]
I really don't think those things work well anyways. What are they for? They don't let any excess air out at all. I just pushed on mine and the air just goes from below my waistline. If I push the bottom it just goes back to the top! If I press and hold. Nothin. Nothing comes out the filter. [ more ]
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J-Pouch ForumsOstomy & Skin
Thanks Chiromancer, I had my j-pouch removed around 6 months ago. I was hoping to have it under control by now. The electrolytes are under control but I get problems with the volume of fluids in my body. I measure my fluid intake and can eat the same diet one day and all is well but the next day I feel faint, dizzy etc. I now know I am in trouble when my blood pressure drops significantly when I am standing. I check it at home when I feel this way and head to the Urgent Care Center where... [ more ]
Try tincture of opium. I dont use or need it any more but when I had a J pouch it was the only thing that worked. I ditched the belt early on and have been using the Brava elastic barrier strips by coloplast. More secure, and an additional line of protection from leaks, getting outside the appliance. [ more ]
It is great that you are doing so well! I've been told by docs to take 2 - 4 times a day. There are many folks that take 4 before hiking, for example. If it works don't break It �� I use Metamucil, generic, twice daily too. I no longer have a j-pouch so we are different. I think it is great you are using VSL too. I am using up some that I had on hand and stretch one packet out over a few days. I figure it won't do harm any more, and my insurance company paid a lot for it. [ more ]
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J-Pouch ForumsOstomy & Skin
Re: Skin prep -- or no? [ more ]
Your are not kidding. Glad it was a minor issue. So glad. It's to a point where I am ready and almost can put my own IV in. Lol..... [ more ]
Haha, one thing about having multiple surgeries and procedures - you're a pro by the latter ones! [ more ]
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J-Pouch ForumsOstomy & Skin
Our cat died a few weeks before my surgery in March. He was only 9 and was the best pet I have ever had. He was a large breed, Maincoon, and weighed 25 lbs. Since I've been home all the time the last 6 years he followed me from room to room and I had to train him not to walk on my stomach. I really miss him and agree with you Lambiepie. He knew when things were worse. When I was a kid we had 2 - 4 dogs and a cat so I am a dog lover too. Richard, I eat blueberries everyday in my protein... [ more ]
No grandkids here yet! My dog Lola sleeps on our bed with us, but at the bottom of the bed. However, the sicker I got with my UC, the closer she slept to me. I used her as a barometer if I was trying to tough things out, to keep going when I should've gotten medical help. She slept right near my head one night. I woke the next morning to get ready for work and almost passed out. She knew I was bad. All those times in bed, in pain, she stayed super close. She was such a comfort to me. [ more ]
Yes. They don't complain too much. Except at feeding time. One knows and the other two start complaining cause I'm not getting up to feed em! I have had dogs all my life. My wife too. Our house would be empty without them. They were there for me through all my stages. No matter how bad I felt the Mini Aussie knew something wasn't right. She is so sensitive. But I always had a hard out to pet her. They help us in a different way that I cannot explain. Richard. P. S. Grandkids are pretty good too! [ more ]
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J-Pouch ForumsOstomy & Skin
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Seems rather bizarre, but if you have one, you have one. How it developed, I have no clue. Maybe poir circulation? Jan [ more ]
Well, if a fissure is a tear, I suppose you can have one if you still have your anus even if you're not passing stool?? Jan would be better able to respond to your question from a medical point of view.... I do want to ask, though, if you have any swelling. About a year after my perm ileo surgery, Barbie butt included, I experienced swelling along the incision site. It was very painful for one full day until the swelling burst and the pressure and pain were relieved. My surgeon never... [ more ]
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J-Pouch ForumsOstomy & Skin
That's great info thanks! Hopefully it will pass. Not really too bad right now but still feel it. [ more ]
I get that occasionally. I've used just some Vaseline and a thin pad for protection. I have no idea what causes it, it's not particular to the summer heat. About a year ago, I actually had some sort of swelling there that was very painful. I made an appointment with my surgeon. Luckily, it popped the night before as it was a bit messy. He put me on an antibiotic although the tests came back inconclusive for infection. He said sometimes these things happen, that there can be a slight opening... [ more ]
Off topic I have itching 6 mos post op in rectal area after removal. No problems till now past 24hrs. Any suggestions for that?? [ more ]
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J-Pouch ForumsOstomy & Skin
I have the small clips on right now and feel more Secure! That is my major beef with Convatec's bags. Velcro is better than those stupid clips but the clips are great. I think I might have said coloplast instead of Convatec in an earlier thread...... [ more ]
TE Marie, I spoke with an ostomy nurse during my perm ileo surgery hospitalization about my concerns about the end of my bag opening and the contents spilling out. She had an ostomy and she was the one to suggest the mini binder clips. By far the best piece of advice I've ever gotten from any professional. I had my bag open in public with my temp ileo and somehow no one saw but it was horrifying. Yeah, I don't like the feel of a belt, either. It feels like a girdle or something. I was always... [ more ]
I am going to dig out my binder clips right after posting this! I tried them too but the wafer is too hard. I was wearing the double belt and all but it wasn't for me. I just can’t stand a damn belt. I would and did get better wearing times when wearing it with all of the different kinds I've tried. [ more ]
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J-Pouch ForumsOstomy & Skin
The funny thing after I posted this and a few months in the weight started to come back without doing anything too much different. I think the body just needs to adjust to the ostomy. I was able to reconnect and along with Entyvio I'm doing great, thanks for asking. I hope your daughter gets better ASAP (((hugs))) [ more ]
Chronmom i was in a similar situation with a diverted jpouch and high loop. My GI docs helped me. Surgeons aren't always the best to deal with things like the weight loss, absorption etc. with the high loop primary goal is to slow down transit so stuff can get absorbed. A few things I remember are: never drink when eating eat 5-6 small meals every day rather than three normal meals. Protein at every single meal. reduce sugar including sugary juices or sugary supplements like carnation, boost... [ more ]
Hi Everyone, how are you all doing now with your weight since it's been almost a year since this posting? My daughter went through hell with her Jpouch - she had it for 16 years with CD so basically ran out of time. She had it diverted with loop ileostomy. During all this, she lost a lot of weight. She was 118 and now 85! She was thin to start with and now she looks awful. Surgeon told her it's a high end ileostomy so we know that she's not absorbing all the calories. But she's currently... [ more ]
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J-Pouch ForumsOstomy & Skin
This sounds just awful and I am so sorry that your daughter is having all these issues. This will not fix her issues with abscess/fistulas, but have they discussed TPN or some other type of nutrition therapy to get some weight on? It is nearly impossible to fight all these constant infections when there is such a nutritional deficit. Jan [ more ]
Hi, i really feel for you!! I have/had 2 fistulas but have not suffered anything that horrible since being diverted. If she keeps getting abscesses, I wonder if the whole fistula tract was not addressed or if the fistula keeps breaking off into other fistulas and causing more problems. Is she on any medication? I am having a hard time gaining weight after being diverted with my j pouch still intact. I am hanging out between 105-110 pounds (normally 120 pounds) which is a 5-10 pound gain... [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
Dark chocolate is full of anti oxidants... that is what I keep telling myself! [ more ]
HA! I've actually been craving chocolate like crazy the past week; just having even a bite takes care of it. And I am eating well, just trying to get the drinking sorted. I don't drink too very much first thing in the morning until after I change the bag, just so I don't have too many dribbles while changing. After that I drink regularly. Just so much to get used to again! Been just over two years since my last stoma; amazing how much I've forgotten... Gin [ more ]
OMG, I remember drinking massive amounts to get off the IV. My sister accidentally spilled out my hat full of urine, proof for the nurses that I was drinking enough, and I actually started crying......Sorry about your blowout. Yes, liquids will come out as pure liquid, but your output should thicken up over time and so whatever you drink will offset that. I drink water or seltzer with a shot of Gatorade and I aim for at least eight glasses a day. As long as your urine is pale and not smelly,... [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsOstomy & Skin
I've read many people on here discuss their revisions. Try to do a search on different key words and you could look at previous posts on this subject. I am a Mayo Clinic patient and found them to be awesome. Everything was explained very well by my GI and surgeon. I tried being diverted to a permanent ileostomy and letting my j-pouch rest but it didn't work so 2 months ago had it removed. It sounds like you have a construction problem that can be fixed. I understand your worry. Any... [ more ]
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J-Pouch ForumsOstomy & Skin
So happy it worked out. Took a little longer but you made to this side. Once there it's wonderful isn't it. Not saying it doesn't have problems but I must say mine have been so minor it's not even worth mentioning. This is a breeze compared to the pouch. It didn't like me at all. I will be 60 in a few days... Married almost as long... 38...and I can enjoy what's left and go to work with no stress.... Well.. Some but it doesn't cause flares anymore. Richard. [ more ]
Thanks for posting the picture Richard. I had no idea we had Staples like that around our stomas. I'm a 60 year old married 40 years I agree with you both. This is much better than life with my j-pouch. I wish I'd had it removed sooner but can only go forward. It's final and it is better than I hoped for. [ more ]
I'm not inclined to use another product. I did try the Mios way back but don't remember how good or bad they were. I tried most. I just use the precut convetec..I just like the precut... Just stick it on and the size is right. They work fine so I will not stray from them. I know what you mean that you have come to peace with the appliance. I did the same. As for the rest of my life. Ya.. Sure... Most of it is behind me. I will be 60 in June. Been married a long time (38 yrs) and if anything... [ more ]
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J-Pouch ForumsOstomy & Skin
Thank you for the replies. I hope all who have recently had the jpouch out are feeling better and those on the fence as I am come to the peace they need to make this most difficult decision. I do believe I will need to take the entire pouch out also as it have given me trouble since surgery 1. The finality is scary as you realize you have no other real options to get well. [ more ]
Jeane, I remember discussing your daughter's impending college experience when we first had our j-pouches. My dad is currently back in the hospital for the 3rd time this year and I am afraid he is loosing this battle. I'm sorry you lost your father. You are under a lot of stress. When my GI at Mayo's made the appointment with the surgeon, himself and me about the surgery I knew my j-pouch was never going to improve. I didn't want to try for another kind of pouch. At 60 I want to get on with... [ more ]
I wasn't mentally ready to have my j-pouch removed so had surgery to divert from using it to a permanent ileostomy last fall. I had a series of UTI'S after surgery. The antibiotics taken to get over them kept my j-pouch pain at bay for awhile. My j-pouch didn’t calm down as I'd hoped so it was removed 2 months ago. I was mentally ready. I wanted my rectal cuff removed as by then hated it and the cuffitis and strictures there. It is a relief to have it all sewed shut. I like that it is gone. [ more ]
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Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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