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11 replies

J pouch help

M Matt34Member
Hello to everyone. I'm new to this forum site and I'm trying to get other people's advise on this life changing matter. Up until April of 2013 I lived with UC for the past 21yrs. I was going to the bathroom constantly everywhere I went had to find bathrooms. In April I gt sick and landed in the ER. I was having lots of flu like symptoms and lots of stomach pain. I have had pancreatitis alot in the past and thought I was having another attack but. The surgeon came to see me and she had gotten all the reports from my GI dr and he has been recommending my colon to be removed and have an illeostomy. So in April the surgeon removed my colon and now I live with a illeostomy and I get grossed out by it and lately seems like I'm having lots of problems with the wafer leaking and the bags leaking and I'm just getting irritated by it. My surgeon is giving me until end of October to decide if I want a j pouch or just remove the rest of my bottom end and close it up. But I'm so confused and lost dont know what to do. I'm sick of having leaking problems I've seen my osteomy nurse several times and she is a great help but eventually I have lots of problems. When I empty my bag I rinse it out and I guess the moisture is not good for the stoma but like I said it just grosses me out. I wish I had a easy answer to make the decision to have the j pouch surgery or not. I'm frustrated and I'm to the point now if my appliance leaks within the next few days I'm calling my surgeon and getting the j pouch but I'm scared of pouchits and all the other side effects from it. Please I need advise. I know this is a life changing decision. Really need some help. Sorry for being so scrambled hope everyone understands what I'm trying to get from here.
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K KeepFighting(Manny)Member
Matt I noticed you said you rinse your bag after you empty, if I'm understanding you correctly, I'm assuming your putting water in the ostomy bag to get the leftover residue out? I use to do the same thing and had constant leaks, apparently the eakin seal I was using didn't appreciate the water very much... Once I stopped "rinsing" the leaking stopped. If you don't mind me asking what kind of appliance are you using? One piece or two piece? Maybe you should ask the nurse to kook into other options as far as appliances go. As far as the j pouch itself goes.. it has its positives and negatives, I'm two months post op and I'm still dealing with nighttime leakage, cramping from gas, diareah and dehydration. I was one of the ones that hated my ostomy.. so even with all the trouble I'm having.. I know its temporary and I have no regrets so far
M Matt34Member
Yes I do rinse my bag out with water but its very little. Not sure how to describe it but I only rinse off the bottom part of my osteomy bag. Then I have a towel that only I use to dry everything off. I'm using the two piece appliances. I was using econseals but osteomy nurse changed my wafer to a convex so now I no longer need the econseals. I also use skin cement that does work awesome for the most part but the bags themselves are nt so hot. I have contacted convatec about them nd they sent me a bunch if bags that are Clear and I refuse to wear them just because I can see all the nasty in it. Most of my leaking lately has came from the end of the bags. I only use the velcrow OPEC bags I hate the clips on the other kind. And another thing that really annoys me is how I have to empty the bag. I get on my knees in front of toilet to drain it I don't have long gated toilets in my house so it's rather difficult to empty the bag sitting on the toilet and even when I'm not at home I kneel down to empty it. Just wish there was better ways then this. With a j pouch I wouldn't have to kneel in front of toilet anymore but would have to sit on nasty toilets again.
Holly MHolly MMember
I had an ostomy for 9 weeks between surgeries. I had leakage around the wafer until I got the right appliance, my stoma used to point down which wasn't a good thing. Once I got that under control and the skin around it under control having an ostomy wasn't that bad. It was great for traveling because I would eat less , eat few marshmellows to slow the output and get on the road for our 3 hr drive to our cabin. As for emptying it if you line the toilet with toilet paper or in a public restroom use their paper towels it lessons the splash and the sound. The j-pouch life is a tough one also. There are times I will admit I wish I still had the ostomy. However, after a year and a half things have gotten a lot better. You kind of have to trade one set of problems for another although lots of J-pouchers have no issues at all. I know this is a hard choice to make, we are all here to help you with encourgement and any questions you have . Keep us posted on how things are going.
LesandiegoLesandiegoMember
I would change the bag every 3 days in the morning before I had anything to eat or drink. After removing the old bag and before applying the new one, I would take a shower and wash the stoma and try to remove most of the wax. My skin would be so happy!

Sometimes I would leak while in the shower, but so what..... it's all going down the same sewer drain as the toilet and then clean the shower afterwards. Biggest problem of cleaning the shower would be the wax tends to stick to the shower basin.

Sometimes for extra assurance, I would apply gauze tape around the seal.

Plant your but further back and on top of the toilet seat to empty.

Why the "deadline" to make a decision? I had my ostomy bag for 8 months.
K KeepFighting(Manny)Member
Matt 34, seems as though my and your attitude toward the ostomy are one in the same, I think from what I gather from your comments a j pouch would be the way for you to go, keep in mind in the beginning, fecal incontinence is normal, you most likely will never be able to pass gas safely without poop coming out unless your lying down.. not that that's a big deal because your not passing gas like normal right now anyways. Bathroom trips vary from as little as 3x a day to up to 12x a day for some people... The norm is 5-8x a day from what I've read. It truly is trading in one set of problems for another. Sadly for us without colons "normal" is no longer an option.. We have to make our own normal.
ElmerFuddElmerFuddMember
Matt, several comments about your situation:
1. Try different ostomy supplies - Hollister, for example. I never had any problems leaking out the velcro enclosure with them. My daughter had a little bit with hers - but they are great if you don't want a clip.

2. Covatec and Hollister sell rings you can put onto the base of the wafer that really help seal things better. Hollister calls theirs Adapt-rings. Convatec calls theirs Eakin Seals, I think.

3. Why is your surgeon giving you a hard date of October for a decision? There seems to be a bit of misinformation about how long you can wait between colectomy and j-pouch, but there really isn't. There are people here who waited several years and had successful surgeries and recovery.

4. If you are in Eastern Nebraska, and you want a referral to the best surgeon in our area (I'm in Kansas City), let me know. She is the absolute BEST and no exaggeration. Not sure of your relationship with your current surgeon or how experienced he is (how many j-pouches, how many complications, etc.) but I couldn't be happier with my surgeon's bedside manner, skills, and experience. And results tell all - I am doing great 7 years post-takedown.

PM me (if you don't know how to private message, post the question here and someone will tell you) if you are interested in my surgeon.

Steve
M Matt34Member
You guys are fantastic I'm so happy I found this forum. The deal with my surgeon is she knows I'm not fond of having the bag and she has been fantastic to work with. She's very good with people to people skills and listens fantastic. I would not let another surgeon do anything to me. The thing with October is she told me October would be a good month to ave the next surgery done if I'm not dealing with illeostomy very well. She wanted to give me six months to try it out and so far I'm not in favor of it. Sorry I'm not good with remembering names but the lady that mentioned trying hollister product I have tried with that too. As well as using the econseals. And someone else mentioned there stoma pointing more downward and i just noticed last night when my wafer was leaking ad needed changed that my stoma is pointed more down then normal. I also use a stealth belt plus the neoprene stealth belt trying to be discreet.
Scott FScott FMember
Matt, it sure sound like you're heading for a J-pouch, since they were developed just to offer a normal-ish alternative to the much simpler ileostomy. I'm sure glad to have been able to choose that option. I have only a couple of suggestions:

1) Choose your surgeon carefully. Someone who does only a few of these procedures per year would not be someone I would choose. A badly constructed J-pouch is not something you want. Also, the deadline your surgeon set may have been well-intentioned, to help you past a crippling ambivalence, but it seems unnecessary.

2) If you can find a way to be slightly more accepting of poop in general you may find the path easier. It's not my favorite substance, but it's not radioactive waste, either. Your future does not look like one solid stool per day, no matter what path you choose. I'm not suggesting spraying it around the cafeteria, but everybody poops.

3) I've never had an ileostomy (I had a one-stage procedure), but it sounds like people with experience are telling you not to rinse. I suggest you at least try following their advice, and see how it works. The desire to "clean things up" may be getting in your way.

Good luck - we're here to help when we can.
M Matt34Member
I really enjoy everyone's comments. One other question has anyone ever heard of having to lose weight before j pouch surgery can be done. I'm a 250lb man and that is what my surgeon told me a couple of months ago when we first talked about the j pouch. She told me it makes it easier to do the surgery when I'm at a lower weight.
P PluotMember
Yes, definitely. There have been a few posts just in the past few days about Dr. Remzi, who is sort of the "j-pouch god" at Cleveland Clinic, telling users they should lose weight before surgery.

I'm a very small woman and I lost a lot of weight when I was sick so I was underweight when I had my first surgery. After the operation I told my surgeon that I was excited to gain some weight back (and this meant just going back to normal, not overweight), and the surgeon told me that I should try not to gain any weight at all! He said that having any added fat on the belly makes the surgery harder. Kind of makes sense when you think about it. I couldn't follow directions and did gain about 15 lb before my second surgery but I know he wanted me not to Smiler

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