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Old Crohn's.....New ostomy

Hello,

My name is Nita. I was diagnosed with Crohns in 2005. Have tried a number of medications: pentasa, asacol, humira, 6 mp, and prednisone. Nothing stop the inflammation. Just had a temporary ilestomy placed December, 11 2012. Hopefully being reversed in 3 months. Currently on 20 mg or prednisone and weening off. Also still asking 25mg of 6mp as my maintenance drug. Have been having a difficult time with this new ostomy because the wafer has to be placed directly over my incisions (OUCH!). Hopefully things will get better once the incisions heal. I am currently using Convatec 2 piece system. I was using the paste but its way too messy. I am trying the seal ring today instead. Other than the leaks, the bag is not all that bad and far better the the flare up pains ice had for years!
 

Angrybird

Moderator
Location
Hertfordshire
Hello Nita and welcome to the forum :)

I am sorry to hear that tum wouldn't settle for you and you had to have surgery, I had an op last year but did not require a bag, we do however have a stoma sub forum that is worth checking out so you can have a chat with others about this: http://www.crohnsforum.com/forumdisplay.php?f=46. If there any plans to up the dose of the 6-mp for long term treatment?

Wishing you all the best and please keep us updated on how you are getting on.

AB
xx
 
Hi Nita I would also like to welcome you to the forum. I have not had to have surgery but i can sympothize with you on the not being able to get it under control part. I have been having constant pain and the runs for years and even though I am on remicade for another condition it does not help my CD either.

I am glad that you are feeling some relief with the stoma and I hope that you become leak free very soon. :)
 
Thank you both, everything is going good so far. Haven't felt this good in years. I just have to find the right appliciance that works and doesn't leak :stinks:. I made a mistake. Currently taking 50mg of 6MP, not 25mg. I see my GI on the 26th and we are to discuss medication management then. I wish I could stop all medicine, but I know that's not a good idea with active Crohns.
 
Hi Nita! Glad to hear you are feeling better! Lots of good resources here about stomas, and here is the link to the stoma subforum:

http://www.crohnsforum.com/forumdisplay.php?f=46

Your attitude seems wonderful! Most people HATE the temporary ileostomy and getting used to it can be tricky at times but it does get better. Sounds like a good idea to use a two piece system for now- I think they are a bit more secure than the one piece and thus a good choice right after surgery. As things heal up, don't be afraid to try some different kinds of bags to find one you like best. The manufacturers of these LOVE to send out free samples so do take advantage of that. These companies also have some product specialists that can help you find the right combination of products for you. The bag should last you at least 3 days without leaking, at least that's what it should be for a one piece. Only a week out of surgery, so your stoma is probably still shrinking- that fact makes it more likely to leak. Your stoma should stop shrinking soon and you'll notice the leaking issue will improve! Please keep us posted with how you are doing. :)
 
I went to my post op appointment today and the surgeon is pretty shocked about my fast recovery. It will be three weeks tomorrow and she has already cleared me to return to work. I still may wait another week though. I love my ostomy and I love being able to LIVE again! This was the best decision I've made.
 
I cannot believe I went back to work today. I was expecting to be off atlest 6 weeks. Sitting at home being bored was literally driving me CRAZY!:ybatty: Since I have a sit down job, my surgeon approved to me go back after only 3 weeks. I think its a record revoer time (atleast thats what my surgeon says). :lol: I am feeling great, and not having any leaks. Only problem is that I developed an allergy to the tape on the Convatec Moldable system that I've been using. I refuse to give up this system because no cutting of wafers is required. So, I just cut the tape off, used a sure seal over it and using a ostomy belt. It has been worrking so far (on day 2 with this set up). Now just to get prepared for the revesal surgery. I am dredding it because I feel better than I've ever felt in years. My surgeon wants it dont in 6 month, I may hang on to Stella for alittle longer. She has made it possible to me to EAT! I'ver even gained 10 pounds already. Life is good........
 
Some of the other manufacturers have moldable systems, too, so it might be worth your while ringing around and getting some samples. You might find one with adhesive that suits you better. It took me about three different manufacturers to find one that doesn't irritate.
 
Thanks Susan. I thought Convatec was the only company that had moldable wafers. I guess I need to do more research. The moldable wafers are a life saver. No cutting required! I love them. I have so many Convatec wafers and would hate for them to go to waster. So far cutting the tape off is working with the sure seals......
 
Thanks Susan. I thought Convatec was the only company that had moldable wafers. I guess I need to do more research. The moldable wafers are a life saver. No cutting required! I love them. I have so many Convatec wafers and would hate for them to go to waster. So far cutting the tape off is working with the sure seals......

I've tried the Coloplast ones and didn't like them as much as the Eakins. Not sure why, but I tried each one with the same kind of bag and the Eakin large seals made the bag last longer. Haven't tried the Convatec ones though.
 
I am getting 4 days wear time now from 1 wafer. I changed it last night which was day 4 and it was still pretty stuck on. I also get nervous about letting it go longer, but I may try it this time around since I also used an mini eakin seal. I am so afraid to try new systems since this one is working so well. I cannot afford to get leaks at work. I have many samples now, but havent tried anything new. Maybe Ill do an experiment this weekend when I'm home.

Currently loving Convatec moldable!
 
This sore around my Stella is so so painful. I don't plan to use eakin seals ever again. It caused a major leak I'm using stoma powder and no sting barrier wipes and it is getting better. The problem is that that paste burns so bad! :facepalm: I'm sure it's because there's alcohol in the paste. Are any of you aware of a no sting paste that I can use? It only stings when applying a new wafer. I've just been tolerating it cause the paste is the only thing I can use to prevent leaks! :sign0085:
 
This sore around my Stella is so so painful. I don't plan to use eakin seals ever again. It caused a major leak I'm using stoma powder and no sting barrier wipes and it is getting better. The problem is that that paste burns so bad! :facepalm: I'm sure it's because there's alcohol in the paste. Are any of you aware of a no sting paste that I can use? It only stings when applying a new wafer. I've just been tolerating it cause the paste is the only thing I can use to prevent leaks! :sign0085:
Hi Nita!

Do you use the paste after using the powder and barrier wipes? Sometimes when my skin acts up I use two powders: first I use the stomahesive power, and then I use Gold Medicated Powder, which is like baby powder but smells a bit more like medicine. Then I put the seal on without paste and then put on the bag. Lastly I put on some 2-inch paper tape around the edges of the bag's wafer. Even though I don't use paste, I get 7 days of wear time. Now that's not to say you will get that, but I wanted to describe what I do without paste to show that sometimes you can go without it and be just fine. I've tried a few different types of paste and found the Stomahesive easiest to use. Mainly because with the other pastes, after the first time you use it the paste is really difficult to get the paste out of the tube. The Stomahesive paste can get a little crusty at the end of the tube, but you can easily remove that part and squeeze the rest out. Not so easy with the other brand. It's probably the alcohol in it that makes the Stomahesive paste act that way, so I would think the other brands would not sting as much. Unfortunately, I have not found one paste that makes me completely happy, but when my skin is clean and healthy I have also found I don't need to use it.

Another way you can try to prevent leaks is by adding some convexity. Specifially, getting a pouch with a convex wafer or try adding a small eakin seal to your existing pouch. When the stoma is too short it will be more likely to leak if you use a pouch with a flat wafer (or flange I think it's called). I don't remember exactly what counts as "too short", but you can get some samples of convex pouches or small eakin seals and try them out. Certainly will not hurt to try.
 
It's been a while since I've been on here. Where do I start. First things first, I've been feeling great. I am able to eat ANYTHING I want including nuts, popcorn, and raw veggies without any blockages! Now to to not so good part. I recently found out I was pregnant (SHOCKER), and I am suppose to have my reversal in my second trimester. My stoma is already prolapsing and its very painful. Not sure how I feel about having this surgery while pregnant. I'm terrified........:confused:
 
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