Need help with diet and skin issues post-ileostomy surgery. Any tips?

Hello everyone.

I have recently been told that my bowel resection/reversal is likely to be in September this year, which is earlier than I thought. Great news but less time to lose weight before surgery. The surgeon says it will make things easier - I want to lose weight gained recently in any event. In the past, prior to ileostomy and gastro problems, I had a lot of success with Slimming World, which essentially, for those who don't know, focuses on excluding fat, sugar, and refined carbs, e.g., white bread. Not necessarily low carb as I can have rice, noodles, potatoes, pasta.

Started back on it on Friday morning and have pretty much just eaten fresh fruit, salad, raw cabbage, chicken, potatoes, parsnip soup, steak, pears, bananas, and green beans. Had some whole grain crispbread too.

Output has been pretty watery since then and pretty frequent o back and forth emptying all the time. Even when thicker, it still seems wetter than usual if that makes sense. This is leading to leaks and sore skin around the stoma.

In the past, I have eaten white bread or cake or crisps such as cheese puffs or skips to solve an output issue - maybe this is part of the reason for my weight gain!

Does anyone have any ideas for thickening output that are diet-friendly? I have trio diamond sachets, but these don't help the wetness around the stoma and bag opening.

Also, any tips on dealing with the sore skin which stops the bag sticking properly so leads to more leaking and seems to be a vicious cycle. The only advice from the stoma nurse for this issue has been calamine lotion. Would 'powder' help with this, and what do I ask for when calling the supplier? I have never used it.

I have just tried putting paste over sore skin before adding my usual eakin seal, but it really burns for a while and then I'm not sure if soreness is due to a leak or paste.

Any advice on both diet and sore skin issues would be greatly appreciated.

Thanks

Hello
I know for me when I get sores around my stoma from waste and shaving the hair off so the wafer will stick to my skin, I sit a couple of hours each day without having the wafer or bag on. I have several towels beside me and let the air get to my skin. I have a towel over the stoma so I don't power spray the room, and I heal up pretty good. I change around 2 to 3 times a day. I get sores from having the wafer on too long, so the minute I feel the itch from a leak, I change.
Good luck with the reversal.

Changing the wafer several times a day seems excessive. When I get a sore, I change a little more frequently, which is to say every third day, and things seem to be OK. I sprinkle a little of that stoma powder on the sore and that does the trick for me. Still, I am sure there's no formula that applies to all. PB

Hi Tigerlilly, so sorry to hear of your dilemma and especially your sore skin. Over the years, I have had similar issues and at one time, five fistulas on the surface around the stoma to contend with, and there was absolutely no bag that could cover them all. So, a huge area became raw, inflamed, and oh so painful. Eventually, surgery put an end to all of that, but while I was changing bags several times a day, I used Cavilon spray on my sore skin. It eased the soreness and at least created a fine barrier between the skin and any kind of stickiness from the bag, wafer, etc. Cavilon is also used to promote wound healing. I get it on prescription from my supplier. It works for me, I hope it does for you.
On the subject of weight loss and Slimming World/ low-carb diets, I can only tell you my experiences, and again they may not apply to you, but it may help. During my "illness," I had a dramatic weight loss, about 8 stones. I was and had been very overweight for most of my life, but the suddenness and through not trying to lose weight were quite frightening. I was not overjoyed at losing so much weight, strangely enough. Probably because it happened so quickly. However, once my last operation was over and I was in a much better place, i.e., out of pain, and coping well with my new stoma, the weight began to gradually go back on. The puzzling thing was that as fast as it went, equally it went back on, and I believe it was because I was no longer taking steroids and now eating the easily assimilated foods that seemed to suit me. That was in 2008. In the last 2 years, I have tried dieting and following the principles of SW and WW, but as both are based on fairly high-fiber foods, I find them very bloating and also difficult to pass. Indeed, earlier this year, I was admitted to the hospital with a blockage after eating some crunchy bran sprinkled on a fat-free yogurt!!
That was scary!!
My consultant said a low-residue diet is the best for most stomas, and that is great for the stoma but not very good for weight loss. SO...
I have gone back to old-fashioned calorie counting in an effort to lose some weight. By eating the foods I know I can digest without problems but carefully watching the portions and also increasing the amount of walking I do has helped enormously. The weight loss is slow, but this is for life, so the small lifestyle changes mean that hopefully I will continue to lose a pound or two each week without too much disruption to my digestive system - or what is left of it!!
It also helps to keep a journal or a diary/log that you can refer back to when you have a week when maybe you don't lose any weight. It is also a visual reference to help identify the weeks you lost well and what you ate that week and those where you didn't do so well, thus avoiding the same mistakes. I have lost 16 pounds in 8 weeks.
I hope this helps and wish you the best of luck with both your weight loss and your surgery.

Uh Tigerlilly, many gave you advice so I'm just stating how I get on with similar issues with my colostomy: I try to make time when Bubbles isn't active, use barrier wipes first and then a very thin film of Betadine ointment and let it dry for a few minutes. Then push on the bag and keep a hand on for warmth and adhesive control. By the way, be very gentle when removing the pouch so you don't break the skin again. It is time-consuming but has worked for me in most cases. Hope it helps you.
Smile and relax, it will get better.
Schnecke xx

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

I am in a similar position to you, except that I am in Woking and have not booked my reversal yet because there are signs of a return of Crohn's Disease to what's left of my colon.

When I first had the ileostomy, I was told by the NHS Specialist Nurse that there was something they could give me to "thicken up" the output. I never got around to trying it, but I think you should ask about it!

Good luck and best wishes.

C

I have a nagging sore that I have a script for Aquacel and Duoderm to cover the spot and then put the wafer over it. It works pretty well. I still have to change it every two days since the sore weeps. My doc hasn't been too much help on this, unfortunately.

You can buy an anti-fungal powder at any pharmacy. You do not have to call your bag supplier and wait. I have recently been dealing with this experience and it truly is awful and painful!!! Any pharmacy will also carry the anti-fungal powder in their "store brand". This has been a lifesaver for me!

Hello Tigerlily. I was reading your questions about a low carb diet. With you trying to lose weight, I have a permanent ileostomy now for the past 7 years because of difficulty with high fiber foods, etc. The one good supplement I am on is Shakeology. I started 4 months ago. It's the first time I can drink a meal for breakfast and it is equivalent of 7 salads in a protein powder, on top of all the vitamins, minerals, etc. Due to my lack of malabsorption, this has helped me keep my ostomy from the runs and keeps it thicker. It has improved my body, and since I work out regularly, it works with my other high protein powder drinks and my normal eating. If you need any more questions answered, I can go into more detail to help you. Just let me know by emailing me. I will try to check out this site again, for I haven't been consistent. I truly am a good positive person about my experience with this food drink. It's very impressive, and I want to help other ostomates like me who want to look their best without hurting their health or causing blockages to their stomas. So good luck. Please don't be afraid to contact me. Have a nice day. Belissima.

Hello,

I understand there are some people who like thick output. But, for me it is very painful. I change every 6-7 days. My routine is to remove the old wafer, shave, power with stoma power, apply skin prep, have stomahesive on the wafer, apply wafer, then lay on the floor (if possible) face down for 2-3 minutes - I very rarely have leaks - but if I have a leak it's a mess (all over and skin irritation)

I would look into "Thick it" - not sure how this will work with your diet. For me, any carb (potato, bread, pasta, rice) is the culprit for thickening my output. They are what I avoid.

Hi Jaxx, thank you for emailing me. I didn't mean the output is thick, like you think. For I have the same problem, it would hurt my stoma, for I can't eat potatoes, rice or anything like that. My stoma is very tricky, and so is my diet. This Shakeology has allowed me to get nutrition without hurting my stoma, and so it would help this lady or other ostomates, so hopefully, I didn't give the wrong information, for Shakeology, for it is the best. So best regards, and thank you for emailing me. Sincerely, Belissima.

Belissima,

I'm doing some research into using Shakeology with an ostomy. Would you mind emailing me more about your experience? I'd email you, but I'm on a free membership for now and I can read emails and respond, but I can't initiate a conversation. I'm afraid it will go right through and that there won't be any nutritional absorption of the nutrients. Have you had this experience?

Thank you!
Daughter-in-law

Hello Daughter-in-law. This is Sylvia (Belissima), thank you for reaching out! Yes, to your answer, Shakeology resolved my malabsorption problems and more. I am CF of the liver and pancreas now. Due to me, the power in this super whole food! For I can't eat my vegetables or salads normally!! My diet is restricted due to the stoma and severe food allergies. I know I can help you and I will attach information here.
Shakeology truly is my survival food, so to speak, and I would not go a single day without it. Shakeology comes with a 30-day empty bag money-back guarantee, so there is nothing to lose by trying this out. I challenge anyone to come up with 30 complete meals that have the same nutritive value, low cost ($3.50 per serving), that are comparable to what you get with 30 servings of Shakeology. It's impossible. Where do the ingredients from Shakeology come from? Super Food Man Darin Olien http://beachbodycoach.com/esuite/home/tokyo28?bctid=637719395001 See what Doctors are saying about Shakeology
http://beachbodycoach.com/esuite/home/tokyo28?bctid=637865717001 Business Newsweek featured this article regarding the superfoods found in Shakeology. This fellow is pretty amazing http://www.businessweek.com/magazine/the-adventures-of-superfood-man-01262012.html
Please ask me questions, I am here to help other people like me. I am trained and have done a lot of studying of nutrition with my own hard journey. My doctors are so happy that I turned my life around and with God's help and the Shakeology, I am alive and doing well. I didn't have this 3 years ago. I have drunk 2 Shakeologies a day now for 1 year and 2 months!! I am doing exceptional considering I suffer from motility and a sluggish stomach transition. Not anymore. My biopsies are perfect, no more gastritis for now!! So I am honored you asked my opinion and I am happy to help you in any way I can. So thank you. God bless you. We can help you feel and absorb all your calories you need to be healthy!! Have a wonderful day!! You can find me on my other places. Sincerely, Sylvia Justus (Belissima)