UOAA Discussion Board

Hi there, posted several times on here. brief resume. I had colostomy for 16 years, but due to scar tissue had to have surgery, did not go well the first time, had second surgery and ended up with an ileostomy. This was about 5 months ago. Before I had the surgeries, my symptoms were severe cramps and horrible vomiting, which took me to the emergency about 10 times.

Last month I was back in the emergency with the same symptoms. Saw the surgeon and he couldn't answer why, maybe just a small blockage. Anyway, my issues are: a lot of output in the bag, will that ever subside a little? Dark output sometimes. Some pain, around stoma, belly. Still feel a little nauseous at times. Do not seem to put on any weight at all (lost a lot). Could that be from having a lot of output, food just does not take effect?

If anyone has any thoughts on this, I'd appreciate sharing. Just thought that I would be feeling much better by now, that's why the surgery was done in the first place.

Thank you for your time and support........................paula

Hi Paula I,ve had an ileo. for 33yr. and last year I had resection surgery and stoma moved from right to left side, the scar tissue from the original surgery blocked my ileum also the pathology turns out to be crohns disease. My new ileo works much better and I also cant gain the weight back I lost during the hosp. stay of 11 days with only solid food starting on the tenth day. I would say that you need more time as you are still healing inside, and eating smaller meals along with fluids that have electrolytes.

Hi Ron, 33 years with an ileostomy, that certain qualifies you as an expert. As I said before, I had a colostomy for 16 years and was absolutely used to it, and didn't even think about it much. However, now with the ileostomy, I'm certainly having a difficult time, but as you said, I still need more time to adjust to it, one question, does the output ever decrease? I'm afraid to go out for long periods of time, beach, etc. Maybe with the decrease in output, I'll be able to gain some weight back. I was in the hospital for over a month, with solid food starting a few days before I left the hospital.

Thank you so much for your reply........................paula

Dear Paula,
You say you had ileostomy surgery but is there still part of your large intestine remaining as part of your stoma? I think it is very important for you to get a clear understanding of how your new stoma was formed. If your new stoma has any residual large intestine remaining that will make management much more difficult. Don't wait too long to find out because medical records have a way of being shelved and forgotten.
Good luck, JackieRose

Hi Paula the output only decreases if less is going in, I slow my output by taking an immodium before going out with friends or riding the trails, or if traveling I only eat a light breakfast.

Hi Ron, yes, that makes sense, putting less in, less coming out. I did try Imodium and I ended up in the hospital with a semi occlusion, so not really knowing if that was the cause, but the surgeon told me not to take it again.

And Jackie Rose, my large intestine was taken out in the second surgery, but I will bring that up with my surgeon when I see him just to make sure. Never thought of that.


Thank you both for the help and support. Every little bit helps.

paula

Dear Paula,
I sympathize with your weight problem: I had completely lost my appetite and when my surgeon came and visited me in the hospital after surgery he told me I was dying of starvation. He recommended cashew nuts with wine or beer. The salted nuts made me thirsty and the beer and wine were comforting. That was 57 years ago.
Best,
JackieRose

JackieRose, wow, 57 years ago, God bless you. Yes, in the beginning I had no appetite at all, but now I do, I eat regularly, etc, just can't seem to gain weight, have been told because the ileostomy is always putting out, the food does not take effect as much. Anyway, will learn to live with it. As long, as I keep out of hospitals, I am very grateful.

Again, thanks for the suggestions ( I do drink and wine and beer,in moderation, nuts have been told not to because they won't digest) and support.

Paula

Dear Paula,
Who told you can't eat nuts? I'm beginning to believe that you don't want to gain weight. Keeping out of hospitals is not a standard for life.

I can eat nuts I love pistachios.
But. Eat them sparingly. I got carried away more than once. And it's a thickener so when I did eat too many it went under my wafer. But most thickening food do that to me.
Go nuts!
Richard.
I can't gain the weight I lost. I got some back but now after 3 plus years I know I won't get it back and am not worried about it.

JackieRose, several people have told me not to eat too many nuts, as Richard stated on his post. I do eat but sparingly. I'm very glad that you are able to eat without restrictions. I don't know how you put that together with my not wanting to gain weight. I do very much to get stronger, but if I don't, again, as Richard stated and I agree, it'll be fine. No worries.

And no, being out of hospital is not a standard of life, but when you've been for long periods of time and at death's door, its very good to be out. My standard of life is to be healthy, and at peace with family and friends.

Thank you for your support!!!

Hi Paula,

Had my colostomy and hernia removed on 11/1/18 due mostly to slow motility despite irrigation. Now have an ileostomy. Dealt with the leakage and other issues and lost some needed weight but ugh -- regained it all and must lose about 30 lbs. I don't want to risk another hernia. I find I do a lot of emotional eating... and may have developed another issue but more on that later.

I had to deal with a post-surgical wound that took from January to May to heal. NOT fun. Took Juven poweder with collagen which helped.

My output is "generous" regardless of the input. I was taking Immodium liquid -- a capful -- 2x/day. Most of the time it helped but it seemed to cause "stomach" upset and reflux. I now try to limit its use when I'm going out and can't empty my pouch for 2 hours. Sleep is still an issue. I wake up a lot and need to empty unless I wear a long irrigation pouch -- and I often don't eat at night.

I'm hoping our systems get used to this. I do eat almonds -- chew them well -- and they are crusty in the output and slow things down. I don't find bananas slow anything down. Ditto applesauce. Bread can but I try to avoid gluten which has been tough. Everyone is so different. I'm trying to drink almond or hemp milk but admit I'm still on lactose-free 2% diary milk (can't have soy). Have you tried any protein powders? I avoid those with inulin which cause gas but there are some good ones -- costly -- at Whole Foods and elsewhere. They may help you to gain weight.

I had PT 2x/wk and just finished that so it's up to me to exercise now. I'll update you guys soon -- as an issue may be preventing this but I hope we both get used to our ileostomies soon!

Diane C.

Diane C., thank you so much for your insights. Yes, my ileostomy also has a generous output no matter what or when I eat. So you now have to lose weight, lol. Always something. I lost about 15 lbs, and for me its a lot, since I'm only 5"1. But, what matters most is to be healthy. So sorry about your post surgical wound, I'm sure it was not fun. Hoping that's Ok, now.

Will try some of your suggestions. Again, thank you for taking the time to respond.

Keep us posted and be well.

paula

More than welcome, Paula.

I'll update the board after I get some xrays. Sigh, facing more challenges and probably surgery. Thought I was past this. REAL disappointed but we gotta look up, right? Sometimes easy, sometimes less so.

I need to be exercising or at least walking but am so nauseated and in pain these days due to recent developments. One is related to my previous surgery and one is not. More info coming when I know what's what. Never weighed this much. Yikes. It's unhealthy. Ha, maybe a good thing -- I have NO appetite right now. I guess we have active ileos. That's probably preferred to a slow one and blockages, yes? I tried to open an account with Byram today to order supplies after the Edgepark hack but its form has some glitches. Must wait until Monday to call. I really will need supplies soon!

Have a good wkend.

Dear Diane, truly hoping you do not have to have surgery. Yes, we all try to be strong, but there are bad days and good days. And yes, I'm sure its better for the ileo to work more, than less, do not want to have blockages for sure. I also have to get up in the middle of the night to empty bag, and I do not eat for several hours before bed. As you said, we shall get to used to the ileo.

I feel your pain about being nauseated. I ended up in the emergency room several times, with severe vomiting, and I know how truly awful you feel.

Please keep us posted after you take your xrays. Praying all will be well for you.

paula