Just had #1 of three part j-pouch surgery

Hi everyone.

I've had UC for the past 8 years, and finally had no other choice but to have surgery. I tried most meds, including Entyvio, but none worked (or at least didn't had enough of an effect). Tuesday I had the colectomy and they created an ileostomy. Currently I'm thinking that I want to go for the j-pouch, but I guess that might change after I have lived with the ileo for a while (not likely though).

Things have been going pretty well; I was up and walking around a little bit on Wednesday, and have been eating solid foods since yesterday. Today they removed the catheter and morphine pump and I will probably be able to go home sometime this weekend.

I have some questions regarding the stoma.

* How will the output change with regards to the amount and how liquid it is?

* Did anyone else feel strange changing the bag the first few times? It feels really weird seeing the stoma protruding, and I don't like how it is constantly outputting liquid. I guess you have to time it to change when it is not very active. On the other hand, I don't have much problems with emptying the bag.

* How long did it take you to fully adjust to having a stoma and to accept that it is your new normal?

Thank you for reading

First off, congrats on being UC free!

I had a two step procedure so I was a little different. My j pouch was created in my first step and I had a temporary loop ileostomy where as you have an end ileosotmy right now. Loops are notoriously more difficult to deal with so I never got used to it. I just dealt with it and counted my days until my takedown surgery. I had a rough 4 months with my ileo due to skin issues.

Mornings were always my best time to change the bag and/or wafer. That's when it was least active for me. You'll get to know the best times for you.

Happy healing!

Ps- I love my j pouch. The only thing I'd trade it for is a healthy colon! ;)

I have a permanent ileo. The best time to change the bag is in the mornings for me also. I constantly poop, so, the night before I know I am changing the bag, I will cut down my food consumption. Best of luck to you...remember, this too shall pass.

I had a loop ostomy and now a permanent ostomy. For most people the output will thicken some as your body adjusts but what you eat also has an affect. In the beginning thickening foods really help. Pretzels and pb, cheese and crackers, yogurt soaked oats, bananas. Soluble fiber helps thicken and slow. Oat fiber and apple fiber worked bet for me.

When I first got my loop changing wore me out. It did take me a half dozen changes or so before seeing my stoma didn't make me nervous. But changing after about a month became more routine.

I adjusted pretty quick. I would say my 10 weeks with my loop were my adjustment period. By the time I had my permanent stoma it just seemed a part of me! After my pain from surgery went away I never even notice my bag. However as NCOT said I don't think I am the norm. I felt so good with my loop and got so sick after my take down that I went to my surgeon and requested a permanent ostomy. So I was ready and wanted it which makes acceptance easier.

Thanks for all the replies. I realize that it is a long process, and I'm sure there will be many emotional ups and downs.

As for emptying the bag, I feel like it's difficult to properly clean the "mouth" of it. I currently have a two piece that has that three fold type of system, and it seems like there's always some liquid left even after cleaning it with TP. Do you have any tips on how to clean it better, or does it just come to down to practice? I'm also supposed to change the bag every day, which seems much more often than the 2-3 days that I've been reading about here and on other sites.

I used a squirt bottle in the tail. I only squeezed it in the end and then I wiped with TP and rolled it up. I think different products are easier to clean. I always had trouble keeping a coloplast clean, even though I loved the closure on that pouch. I think the hollister was the easiest to keep clean because of the shape and the smaller tail. The problem I had with the hollister was getting it open. A few times I spent such a long time trying to get the end to open. Finally someone told me to bend it in the beginning and that helped. You're still so new to this, I think it would be beneficial to explore lots of different supplies. I can say, with my end ileo, it was weird for me at first. showering naked was weird and seeing the stoma, but I got used to it surprisingly fast. Mine was really small and didn't protrude a lot. It was the stoma I would have wanted if I had a permanent one. I have a jpouch now but my end ileo was easy peasy. I could see someone opting for it if they really don't want to ever worry about pouchitis and they have had enough of butt troubles all together! By the end of my 3 months with the end ileo, things were pretty thick, I could shower naked without worrying about output. Mine wasn't all that active. The loop was horrible for me.

07kr5 said...
I currently have the two-part Hollister bag, but I will probably try other ones. And yes, I am being told to change the bag every day and the wafer(?) every 2-3 days, which seems much more often than what I've been reading.

I'm gonna try using a squirt bottle. Are any of you using something to remove odor? I've heard there are certain products you can buy that you put inside the bag.

Did they say why you were instructed to change every day? I was never told that and never did that at all. I've made it 6 days at times with one appliance. I don't see any need for daily bag change. Also what I liked to do is when I emptied and filled up my bag with water, I like to swish it around my stoma area to clean that a bit too. I never needed anything for odor but yes they do make stuff you can squirt into the bag. I'm sure most manufactures of ostomy supplies makes one, I know hollister does.

I found the best deodorizer that really works for me. It's made by Safe and Simple. It's their pouch deodorizer without lubricant. It's an odorless blue liquid.

I have ZERO odor. Truly amazing. I give a couple squirts every time I empty my bag. I don't need to use room sprays anymore. My husband says it's a miracle product. Lol.

They'll send you a nice size sample. Make sure you ask for the one without lubricant.

hah, good question. i would imagine there is. I always say having the pouch is actually quite similar to having the ileo in my opinion. More similar to the end than the loop. With the loop, I had a lot of issues with dehydration and general unwellness, but with the end, I felt good. The trips are dependent on consumption, like they are with the ileo. eat a lot, you will go more. Of course, you can control it. I can hold it, I can go on command if I want to "empty" before going somewhere. In some ways, it can be convenient, but of course, there is no convenience like going once a day or less. The odor situation is also interesting. I remember with the ileo, there were odors that didn't smell "normal" (compared to what I was used to)/ it literally smelled like the food exactly as it went in. With the pouch, it can go either way for me. Sometimes it's like colon poo, sometimes it's like ileo, or anywhere in between. Generally it's not too repugnant. The sounds are where things are difficult. If i push hard with my jpouch, sometimes the wind is LOUD. I have learned not to push in a public restroom, just leave things be. That way I don't startle anyone. The squirt bottle was great for me. I didn't try to clean the pouch out, but I felt like the end was clean enough that I could fold it up without it being a problem.

ByeByeUC said...

07kr5 said...
Was there any relation between the number of times you had to empty your bag in a 24 hour period and the number of times you have to go to the bathroom with your pouch (when everything has more or less stabilized)?

For me the difference was night and day. I had to empty my bag constantly. (Like every hour). With my j pouch, it's usually around 4x a day. That of course is after my recovery period when it all settled.

You only had a loop ileostomy though, right? I currently have an end ileo. Not looking forward to the loop from everything I've read...

Did anyone experience problems with itchy skin around the stoma, and if so what did you do about it? I have really sensitive skin so it has already started to become a problem for me. I am meeting my stoma nurse on Monday, so I will ask her about it then.

When I change the wafer there is sometimes a little bit of brownish residue around the stoma (almost like a very thin circle around it) even though I cut the wafer to fit pretty tightly. Is this normal or is should I try to have an even tighter fit? When it was too tight once i got some blood in the bag, so I'm trying to give it some room. Would a concave wafer help with this issue?

07kr5 said...

ByeByeUC said...

07kr5 said...
Was there any relation between the number of times you had to empty your bag in a 24 hour period and the number of times you have to go to the bathroom with your pouch (when everything has more or less stabilized)?

For me the difference was night and day. I had to empty my bag constantly. (Like every hour). With my j pouch, it's usually around 4x a day. That of course is after my recovery period when it all settled.

You only had a loop ileostomy though, right? I currently have an end ileo. Not looking forward to the loop from everything I've read...

Did anyone experience problems with itchy skin around the stoma, and if so what did you do about it? I have really sensitive skin so it has already started to become a problem for me. I am meeting my stoma nurse on Monday, so I will ask her about it then.

When I change the wafer there is sometimes a little bit of brownish residue around the stoma (almost like a very thin circle around it) even though I cut the wafer to fit pretty tightly. Is this normal or is should I try to have an even tighter fit? When it was too tight once i got some blood in the bag, so I'm trying to give it some room. Would a concave wafer help with this issue?

Yes, I only had a temp loop.
I had a lot of skin issues my ileo. Th itching was awful. My problem was my stoma was recessed (temporary loops often end up that way). Hopefully you'll have a really good stoma made when your surgeon does your loop. I tried all kinds of things but nothing ever helped me. I just patiently (well, impatiently really!) waited for my takedown. That was happy day!! All in all, I'd do it over again in a minute. Being UC free now made that short time being uncomfortable all worth it. :)

PS- to answer your question about the concave wafer, yes you should give it a try. Maybe your stoma nurse can give some samples.