What appliance are you using? If it has paper tape, you can trim that on the side near the incision to keep it from sticking too close to the wound.

Soup goes through me at lightening speed - I love it, but it goes fast. Do you have an end ileo or loop? You will find over time the output slows and adjusts. THere are some foods that go through me fast and come out all liquid - Chinese food for example. Other foods are slow and thickening - like kettle cooked potato chips. I've had my ileo since 2001 and over the first year it adjusted a lot. Now it is very predictable. I use immodium at night (2 tabs) when I remember. If you take it regularly it works better and will not only slow things but thicken them.

While you are getting the hang of the changes, eat two marshmellows about 5-10 minutes before you change. It will slow or stop your output for about 10 minutes so you have some time without output to do the change.

Jill,

I have a loop and I have read that this is a bit trickier than an end. I told my dr that and he totally disagreed.

I am using a Hollister. My stoma is right next to my belly button and that just does not seem like a great place to be. It seems like it should be lower, but what do I know. The very top of the bag is actually higher than my waistline which seems it will be problematic for wearing jeans.

The nurse took out the staples today which already feels better. She put the bag on perfectly of course and I feel so much more confident today. It will be a nice day when I can perfect this awkward job.

My doctor recommended Lomotil and was wondering if you tried it but prefer Immodium. I took a lot of that with my j-pouch and can't believe I have to take it again.

Can you eat salads, oatmeal, and wheat bread now? It's not on the list at this time but I am hoping I will be able to eat in a month or two.

Thanks, Jill, for your support.

Donna

Donna, I am glad to hear you are feeling better.

I wouldn't worry about the clothing part right now. There are ways to work around the bag, no matter where it is placed. For example, the top of my bag is above some of my waistlines, so I wear long, snug camisoles under my shirts and it works fine. But, really, try to put that topic on the back burner for now.

I used to use Lomotil and it made me sleepy. I prefer Imodium and I've learned that it works best when taken consistently. Just make sure your body is ready for that. I used Metamusil and Imodium too soon after my surgery and it blocked me up.

I also use Ile-sorbs, which help me a lot. They are gel packets that go into the bag and absorb liquid. I eat a lot of produce and often have liquidy stool, so the packets are great. Your WOCN can help you find something like that, if you are interested. Your stool will also thicken with time and as you figure out your go-to foods.

My experience with WOCNs has been really valuable and I encourage you to get help from them as often as needed. They were especially helpful in the early stages after surgery when I was figuring out what system worked best for my body.

Like Jill said, you will figure out what works for you in the food department. Take it slowly and you will know what your body does/not like. It seems to vary among individuals, just like it does with the j-pouch.

Good luck and let us know how things progress. You are so new in your recovery -- please try to be patient with yourself. I remember wanting to get it all dialed in quickly and the fact is that some of it just takes time. I had my surgery just over five months ago and it has absolutely changed my life for the better.

Lomotil is a controlled substance, so immodium is a safer choice in my mind.

I eat everything. Wheat bread, raw veggies and fruit, nuts, popcorn...the last two in small amounts, but I still eat them. I chew well and make sure not to have too many of these items at the same time. THe only thing I have ever had a problem with is broccoli that wasn't fully cooked...

Definitely don't sweat the wardrobe. I wear mid rise jeans all the time. You will find the more comfortable you get the more you don't care and or find ways to work around...

Thank you so much Lynne and Jill. I know you have had your ileo for awhile Jill and have mastered it. Lynne, it is amazing that you have had it only 5 months and feel so confident and happy with how things are going. I have always been an inpatient person and this is a challenge. I am trying really hard to focus on a month from now and not on today, knowing from what you both said, it gets better.

This is what is frustrating - I am emptying my bag every hour if I eat regularly. I don't know if it is what I am eating or if it is that my gut is still under stress from surgery - thinking both but do want to do whatever I can to make this transition easier. I do like to eat but am not eating a lot at one time so I don't stress out my system too much.

It really amazes me, Jill, that you can eat everything. I got so many mixed messages in the hospital such as - you will never eat salads again, no spicy foods, never anything carbonated. I don't drink sodas but an occasional glass of champagne I do love.

The bag itself makes noise if it is touched and it would be noisy enough for the person next to me to hear if I happened to run my hand across my abdomen in a very quiet place. Any advice there? I am private in my health matters so know one knows about my surgery except my family and a couple of good friends. Do you wear any type of special panties? I saw these neat ones that look somewhat tight fitting and have a separate panel on the side to place your pouch. I also ordered a 9" panel to wrap around my midriff to help keep things in place and support the area. It is so thick and bulky. I guess I can send it back because I won't be using it.

My doctor recommended Lomotil which I just got but will try the Immodium. I was using Lomotil with my J for years and it worked well for me. I do like the idea of using something non-narcotic and something I can get over the counter though.

I do hope I can have such great attitudes as you two and I know time will tell. Most people do they say, so I am hopeful. I never did have a temp ileo with my j-pouch so this is difficult to adapt to not even expecting this before surgery. I have such a supportive husband so I know I am very fortunate.

Thanks again for all of your practical advice.

Donna

No carbonation? I'm drinking soda and seltzer every day (bad habit I need to break but I don't drink coffee or alcohol so its my vice )

I often choose not to eat salad just because mostly the lettuce comes out undigested, so what's the point, but I can eat it no problem.

The noise gets better. Give it some time. For now, just wave it off as being hungry.

I don't bother with any of the special panties or clothes, just use all my usual stuff. I'm really a less is more girl.

Loop ileos tend to be more active and liquid than ends. Some drs dispute this but most patients agree. It will probably adapt and adjust the same though. Give it some time. You might want to go back to eating more regular meals - by eating more often you are keeping the ileo working all the time.

When I eat, I have a very fast transit time, so it takes about 30 minutes after a meal and everything is processed. Then I empty and I am good until the next time I eat.

It really does just take time. You will get there. Feel free to ask questions!

Jill,
Every time you "talk to me" I feel better. Yeah, I told the dr that most folks found that the end was better but I have more faith in what you guys experience.

So transit time is about 30 minutes? How does one even get any nourishment? Are you underweight? I have lost 6 lbs in the last 11 days and don't want to lose anymore but it is hard to gain right now. I love good food, my downfall is sweets, but don't want too many of those empty calories in my body right now. But that does put the weight on me, I know that.

Are you saying that you only empty after you eat about once? That will be nice to get to that point. Like I said, I am emptying every hour so am looking forward to the day where I am not glued to the toilet like in days past.

Thanks again for helping out and give encouragement at this time. The future always looks brighter when someone is coaching you along.

Donna

Donna

The first few years with the ileo my weight stayed pretty steady. I was on the light side, but didn't really gain. Not so much now I'd like to lose about 15 lbs now. Drs don't want me to go too low because if I get the flu or other stomach bug I lose weight fast.

I had nutrition panels run early on when they were studying my transit time (can't remember why they were doing it) and everything was good.

Generally I eat, wait until I know the bag is full, empty it and them I'm good until I eat again. If I snack then I will go between meals. Also depends on what I eat. Certain food just don't move as quickly.

If I'm going out somewhere special, or need to have longer between emptying I take two Immodium before I leave the house and I can get 5 hours with no emptying. I can sleep through the night without having to empty.

When I made my decision to have my pouch out I couldn't find anyone else who had done it. So, I stick around to help others who decide to do it. It's always easier if you are not alone!

Keep an eye on your hydration and weight. If it is dropping that quickly you have to be careful. Make sure your dr knows what is going on - you don't want to get too depleted.

Hi Donna

I just got my ileo a few weeks ago so I can understand what you are going through. My stoma is fairly close to my incision as well, but luckily I am able to get my flange pretty close to the incision without going over it. With my first ileo the flange would have covered my incision line if I didn't cut it, just a little trim seemed to help and it didn't affect the adhesion at all. I've noticed that my abdo swelling has gone down quite a bit this week, and my tummy contours are changing, which also makes placement a bit easier. I hope the same goes for you.

I'm emptying quite often as you are. About 8 times a day. But, I know over time this may decrease. I seem to get pretty gassy, which has me going to the bathroom to empty even if there isn't a lot of stool in the bag. Soup goes through me very quickly, so I always have some white bread with it and it seems to help.

Even with the irritating butt sutures, my open abdo incision (it's 4.5 cm x 17 cm right now!) and the usual ostomy worries I'm still much better off than when I had my j pouch and all the problems that started happening.

I feel so lucky to have found this website and I know the support of it's members will help get me through the tough times. If you ever want to talk, send me a PM and we can arrange that

I discovered what really thickens things up for me is potatoes. Chicken Alfredo went through me so quickly and it seemed I was in the bathroom for 3 hours. It was so good though and I see that PIT suggested combining something like that with say bread - will try it. I imagine it was the cheese and milk in the sauce. I notice when I eat larger portions of a meal, I feel so bloated and uncomfortable. They are still smaller portions than pre op but like I said earlier, I am losing weight and don't want to lose anymore. I know I have lots of swelling yet and perhaps this will get better with time. Just trying to mentally get a grip on the do's and don'ts.

Jill, too bad no one was here for you way back but I am sure you realize you are invaluable to so many of us. People like you are a Godsend.

PIT, thanks for writing. Good to know you are doing so well so quickly. Your J-Pouch is/was as old as mine. Were there any problems in removing it? Mine is still in there since it was so difficult to remove because of the adhesions. Did you have a lot of adhesions or was it easy to remove? The plan is to create a K-Pouch out of mine in a year at Cleveland Clinic. I know it has to either be used or come out so I will face that challenge when it comes.

On forward to another day of adjustment. I am waiting for the day when I can take my dog for a walk. The weather is beautiful and when I have the strength, this will be the best medicine for me.

When I had my loop ileo I emptied my bag 6-8 times a day. With my end ileo I empty 5-6 times a day. I stayed away from veggies the first two months after surgery (to avoid blockages) but now find they're great at thickening my output. Anything with citrus, chili or dairy goes right through me, so I avoid those whenever possible. (When the siren song of dairy seduces me I take a couple of lactaid chewables.) Bananas cut the odor, garlic and eggs make it worse. I drink two or three 20oz bottles of Gatorade a week to make sure I get my electrolytes. The only med I take is one Lomotil at bedtime. Life is good.

Good luck!

hey donna I think I replied to another one of your posts. Just wanted to add, get outside and sit, even if you are not strong enough to walk the dog. I always did that early days out of surgery and it was so helpful. Also you can make yourself little walking goals. Like walk to the mailbox one day. Few days later walk down the block. two weeks later. Walk the dog to the mailbox, ... you get it. Give yourself little baby goals that will keep you out and moving and it will help you mentally in your recovery.

and since I just read your jpouch is still there... what is coming out your backside is pretty normal, especially so soon out of surgery. I would mention it to your surgeon though at your next appt. Of course if you see blood or what you think is old blood you may want to speak to him/her sooner.

I do have a loop but will have it until my next surgery to create the K-Pouch - 6 mos to 1 year. I take a Lomotil before every meal and it doesn't seem to do anything for me. I took an Immodium tonight and perhaps should try them for a couple of days. I just feel lost right now.

I do walk around and am getting exercise around the yard and in the house. Yesterday I braved it and went to Target. Today I am totally exhausted and was laying around most of the day. I am such an active person so I need to be patient and need to remind myself that it will take more time than I thought to feel well.

One question - is there always a bulge where your pouch is? My stoma is right at belly button level and my waistband hits the top of the bag so it bulges out a bit and then even more when it fills. I don't know if the stoma was placed too high but it just doesn't seem right.

Thanks ISeeUC and Liz for your suggestions.

donna, you may have to "play around" with your clothing to figure out what will work best for you fashion-wise and comfort-wise. You may need to wear lower or higher up waistband. I wear all sorts of different height things. Some hit below stoma, some above stoma, and some of my pants hit right at the stoma.

But you are still soon out of surgery so your gut is probably still swollen. Also you stoma will shrink down some more probably. Also - as I mentioned in a previous post, seems like you are have high output ileo right now. So if you work on slowing down the output, it will thicken up things, and then your pouch won't fill up so fast. For me personally, I empty the thing when its less than half full usually as I don't like to have a "bulge" look. But there are many times or situations that I just let that baby fill up and don't worry or care about what it looks like. Just put your arm over it and no one will know.

You may just want to put off worrying what you are gonna wear for a few more weeks. And then you can play dress up in your own home as you figure out what will and won't work for you.

Also lomotil never did anything at all for me. I was an immodium girl with my loops. You may want to try benefiber also. Sprinkle a huge tablespon on your food 3times a day. Though I would start with maybe just once a day as you are so soon out of surgery.

Hi Hi!

No, there weren't any problems in removing my jpouch. My surgeon expected there would be way more scar tissue and adhesions (after 18 years with the pouch) but she said it really wasn't bad at all. One of my fallopian tubes had completely adhered itself to my pouch, but they were able to release it and didn't remove the tube. I have a very low (almost zero!) ovarian reserve anyway, so bio children are not in my future, and I'm only 33.

I did feel a bit of mourning over the loss of my jpouch, I did feel this way when I lost my colon as well. It was emotional to wake up and realise that my jpouch was no longer a part of my life. We spend so much time planning our lives around bad jpouches that I almost didn't know what to do with myself in the beginning. But, as Jill has told me, it's ok to cry. And I do. I have a little tear fest every couple of days and I find I'm very sensitive to sappy commercials. I guess my hormones are going crazy.

Donna, things will work out for us, and one day we will be giving advice on this board just like we are receiving from the best set of people out there! Keep your spirits up, I'm here recovering right along with you and we all understand what you are going through.

Hugs and blessings to all.

I was pregnant when I got my ilestomy so I completely understand how you feel about the bags leaking. We had a lit of trial and error. Its almost impossible to get the bag to stick with ut being ao cloae to the incision. We would off set the hole you cut for the stoma and angle the bag. As far as emptying the bag, I did it every time I went to the bathroom because I was self conscious about it. They have a lot of different pouches out there and ince you find one that works for you it goes so much easier. I would stay away from bags with clips on the end, they are harder to empty so frequently. I really liked the ones that folded up and Velcroed. They were faster and cleaner to empty that most other ones I tried. I know this is difficult on you and it feels like it will never get easier but it does. Pretty soon you'll peobably even be changing them on your own! Just remember, imodium is going to be your best friend I truly wish you the best of luck

Y'all have been such a help. I am going to have my pouch removed October 3rd and I am seeking all the information I can get. thanks