Posts: 565
7/13/12 12:24 P

I understand about the skin allergies. I can't use regular bandaids but have to use latex free bandaids. I also am allergic to papertape, adhesive wipes, stomahesive paste, latex which includes stomahesive backing type pouches. I haven't tried the Coloplast bags I don't think. I used active life durahesive, convex drainable pouches. I understand your frustration.

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7/3/12 12:50 A

I found out about 2 yrs. ago that I'm allergic to adhesive. Pink waterproof tape, papertape, adhesive wipes for my ostomy, I've even broken out with bandaids! I'm not even sure if it is an actual allergy I have I just know I don't react well to adhesive! I use Coloplast bags. They unfortunately discontinued my favorite bag (the assura extended wear) so now I have to deal the Sensura regular wear bags because I can't stand the extended wear bags with the velcro flap! It always leaks! At least my current bags don't; they just don't last as long as the extended wear ones would. :-(

Randi

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Posts: 565
5/25/12 3:16 P

I also have the Rheumatoid Arthritis besides the Crohns Disease. I get the side affects of yeast infections under my breasts & have to be careful to avoid infections because of the treatments. I don't have alot of pain with them unless I am dehydrated and is put in a tender area. I have been getting them for 7and a half years now. The location of the iv determines whether you have pain from the iv. I have a friend who has allergy reactions and has to take Benedryl to keep from having an allergic reaction. It is an individual thing. Some people's bodies can handle it better than others. People who are allergic to eggs shouldn't get it but if they have to have Remicade. Definetely use the Benedryl but also add Tylenol to it. There are more people whose bodies are able to tolerate it than not. One really big tip is 4 to 6 hours prior to your treatment, drink lots of water. It makes a world of difference. On a rainy day, drink more than a sunny day. Hands and lower to underside of arms are more tender usually than the top of your arm. I have never had to get Remicade in my stomach or legs so I can't tell your much about those locations on whether they would be tender or not. I try to think about sunshine and water to help relax so putting the iv in isn't extra painful.

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5/22/12 7:20 P

I have a friend who is getting ready to start remicade for Rheumatoid Arthritis. Do you have issues with the infusions? The only other person I know who took it had alot of pain with them and had to be demeroled into oblivion. She had lots of issues though including having to have 2 liver transplants due to all the steroids and tylenol she lived on as a kid and teen. My friend asked me about it, but I've never had to take it and don't want to pass on J's story as the norm because it's not.

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5/22/12 9:46 A

I am able to use stomahesive powder to fill in my gaps. Thankful I am not allergic to that! I am also prone to fungal infections due to taking the Remicade infusions. Side effects are very aggrivating.

current weight: 219.0

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Posts: 150
5/22/12 9:14 A

Luckily, I'm able to keep everything in check by just taking 150mg of imuran. I went from 1986-2009 on NO meds so I've been very lucky in the medication respect. I also use Eakins under my durahesive pouch but I'm lucky to get 3 days out of a seal and more likely 2 days. I would be toast if I were allergic to the paste. I have a giant dip I need to fill in with it. I will have to check into the nystatin and kenalog. I'm prone to getting fungal infections, especially this time of year when the humidity makes it feel like we're walking around in soup. I usually just do diflucan, but maybe those would keep me from having such issues.

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5/22/12 1:06 A

My 1st specialist had an ego trip & would tell me how he saved my life but thought he could monitor my condition by me calling in to his clinic & talk to his nurse once a week. I knew I was in trouble when I was in a flareup & called him & my medicine was changed. Then a week later, I was so bad that I went to the ER only for them to call him & he upped my medicine to the same amount that he did previously. I found a new specialist but it was 3 weeks into my flare up. He tried new meds but told me from the start that I might have to have surgery because I was so bad that he couldn't tell if uc or crohnes disease. I was in the hospital for 28 days that time. I came out of the surgery without a colon, rectum, appendix & part of my small intestine. Healing awhile and I lost most of that year.

I have latex allergies, skin prep allergies, stomahesive paste allergies, and paper tape. I went to a durahesive convex one piece drainable pouch. It works the best for me. I tried coloplast and was having trouble with my skin being raw. My stoma doesn't behave like the specialists tell me it is supposed to. I also use a eakin cohesive seal under my pouch against my skin. My skin allergies make my skin raw and miserable. I use Dial or a similar type soap and water to keep my skin clean. That is all it will tolerate. I also use Kenalog spray & nystatin powder to keep my skin from getting raw and irratated.

I have difficulties with fiber. I don't tolerate whole wheat anything very well. I can eat any other grain without trouble. Chicken any way other than boiled &creamed causes symptoms. I have recently discovered I can't eat alot of peanut butter, I am having nut issues caused from the oil in the peanuts. I can't eat alot of fresh fruits and veggies either. I try to eat small portions of problem foods to keep from getting issues but also trying to get some nutrition from my food.

My current doc is terrific. He is very picky about knowing what is going on. I take Remicade every 8 weeks. I also have blood work & urine test also at the same time. He wants to make sure we stay ahead of issues. I take my iv treatment at the hospital. My doc won't start the treatment usually until my results are back from the tests.

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5/21/12 9:52 P

I had my surgeries in 1986. I have crohn's, but didn't present like most people. I had a horrible MD who would pat me on the hand, assure me it was a bacterial infection and send me off with antibiotics. If he'd bothered to take a CBC, he'd have known that my white count and CRP were out of control from the flare I was having. I got so dehydrated that my family took me to the ER and threw a fit until they got a surgeon in there. They thought I had UC and went in to do a biopsy. I perfed and had to have the ileostomy right away. I spent 9 weeks in the hospital and don't remember 1986 at all! I (after a 2nd perf) still have about 8inches of colon flapping around in the breeze in there, but it's SO not worth a 7th abdominal surgery to connect. In fact, my new doc has been instructed that if he ever HAS to go in there, he's to take the darned thing out.

I do pretty well with foods, although I have to be careful of berries, nuts, seeds and too many raw veg at a time. I do alot of juicing and green smoothie making which makes rougher veggies like kale and berries more tolerable.

Lorne- I'd be interested in hearing more about the skin allergy issue you had. I think I'm having one to the durahesive wafer. I've tried things by coloplast, etc but they just don't seem to work as well for me. I'm tired of being itchy though!

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5/21/12 3:28 P

I also had an illeostomy in 1997. I was called a complete illeosomy. I was 29 when I had it done and was from ulcer of colitis. I had a bad specialist at the time. I have a much better one now. I was in a flareup when I changed specialist. He wasn't sure if it wasn't Crohnes Disease instead. Must of been both, I hear that is quite common. I made it through with the help of my husband and 2 step-children. I also have problems from time to time. I have noticed with time you learn what foods you can tolerate and how to avoid problems. I also had to learn to deal with skin allergies and how to not set them off.

I also pray for those still dealing with problems from their ostomies. Experience has proven helpful in so many ways.

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Posts: 173
5/21/12 2:13 P

My illeostomy was due to having Familial Polyposis. I was 24 when I had it done. It was rough at first, but I finally got used to it. I of course still have problems from time to time, but I make it through with the help of my boys & my husband. It's always nice to be able to talk with others who have the same problems & issues.

God bless you all! I pray those still dealing with problems from their ostomies find the help & support they need. If I can help please let me know.

Randi

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