New Ileostomy

[Kris]

I just got my Ileostomy on Feb. 15th. It is supposed to be temporary. Maybe 6 months. There is always that chance it could be permanent, so I think my emotions are up and down with that idea. Especially when I have a messy accident. Then I cry and say to myself that I can't believe I have to live this way. Then my husband hugs me and reminds me that it's a hell of a lot better than worrying about dying. He then tells me he is perfectly fine with it and it will be ok. Thank God for such an amazing husband. Anyway, I also have my moments when I realize that I'm not running to the toilet 20 times a day and gushing blood and it makes me smile. It's only been 11 days after surgery and I already feel a lot better. I am so glad that I finally had my surgery and I do wish I had done it a few months earlier. If there is any advice people could give me I would greatly appreciate it. Whether it's about clothes, bag styles etc. Just any of the lessons you learned the hard way with your ostomies. My stoma is pretty sore at my stitches. I worry about infection. Does this soreness last a while?

 

[ameslouise]

Hi Kris:

Give it some time. It's been 8 years since my temp ileostomy, and 18 days until I get my permanent one. You're stoma is still very new and need some time to heal!

You are lucky to have a supportive husband - he sounds wonderful. Once you recover from the surgery, you will be feeling tons better. Like you said, not running to the john every ten minutes and gushing blood - having a bag is a small price to pay to do away with those things.

Better an ostomy bag than a body bag!!

Hang in there. You'll start to feel way better very soon.

- Amy

 

[CDDad]

Hi Kris,
I guess we all go through similar thoughts when dealing with a new ostomy. I had the same questions - is this really for life? Can I deal with this?. The great people on this board told me that things would get better. They said in time dealing with my ostomy would be easy and routine.

I could not envision it at the time, but they were right. I'm 10 months post surgery from my permanent Ileostomy, and now it is routine and easy to deal with. I don't think about it every minute like I did in the first few months. I don't look in the mirror with disgust and disbelief that this pouch is hanging from my body.

It's just a part of me now. So what you are feeling is normal - and just when you are getting used to it, you may have that reversal. But, if you have the constant mindset that it is temporary, you won't need to accept it, and that may make it a bit harder.

I use a two piece Hollister system with cut to fit wafers and a drainable beige pouch with a filter and the Lock n Roll closure. It is best to test the 3 major companies products to find the one that works for you. They all readily send samples and new user kits to win your business.

Good luck and keep your mind on 2 to 3 months from now when you'll be feeling great!

 

[Nyx]

I don't have much more to add from what Amy and Joe have said. It really does get better!! I have a permanent colostomy and have had it since Dec. 2009 and I don't really even think about it anymore. And you're so right...the not running to the bathroom 20 times a day and gushing blood is a really good thing! Just wait till you get back to eating...you'll be amazed! I love food now...sigh...

Life is good! And it will be for you too!! Good luck!

 

[Christie]

Hi I have had mine a year now and will be getting it reversed at the end of the year, I had a few accidents at the beginning but am so happy that I dont have to run to the toilet all teh time. Its only been 11 days since yrs so you will be feeling like that but it does get better x

 

[Kris]

Thank you everyone. I need all of the good advice I can get. I'm most nervous about returning to work, but I think the more I get to venture out the more confident I will become. Keep the good advice coming please.

 

[CDDad]

Here is some more advice - my way of dealing with my ostomy was to learn everything I could about it. Everything seemed so strange and foreign at first. What is a one piece? two piece? barrier ring? Powders, on and on. So I just kept reading the forums, here of course, and at the UOAA forum.
I had nothing better to do while recovering. After a while, it started making sense and I could follow along with the forums and understand all the terms and jargon.

That made me more comfortable plus it's great knowing you have a place to go with questions, etc.

 

[Terriernut]

Joe and all are right! As usual, what a great bunch! Learn everything you can, and deal with it day to day. I'm still learning every day I dont mind admiting it. Stan was created very late on the 22nd of Dec. He is supposed to be temporary, meaning up to a year. I had a choice of a body bag or a stoma bag, not a big choice. I have my bad days. I am better than I was pre surgery, and that is a plus. I'm still learning to cope with going back to work, etc... But I can say that every day gets better, and that is what counts! My stoma stitches had to be cut out, they didnt disolve by the way, and they hurt like a *&&%%$...ring your stoma nurse or Dr. After that I was much better!
Misty

 

[ameslouise]

Glad you chose the ostomy bag Misty!!!!! It's easy to deal with the bag when you look at it that way.

 

[Kris]

Another question, did any of you have trouble with weight gain after surgery? I didn't really lose much weight after surgery and I worry that I will start packing it on now that my body is healthy. I'm afraid my body is going to go into survival mode and hold on to all the calories it can. That's what usually happends to me when I go into remission.

 

[Nyx]

I've gained 30lbs since my surgery in Dec. 2009. But I needed it....

 

[Christie]

I have gained about a stone but I needed to also

 

[CDDad]

I've never been over weight (maybe a bit when I was on Pred), but my weight went right back to normal after my surgery. Probably took 2 or 3 months. I left the hospital super thin at 150 lbs, and now I'm about 170.

I had to google what the heck a "stone" was. I knew it was some type of weight measure. Google says 6.3kg. Then again the "lbs" I listed above are probably foreign to many.

 

[semicolon306]

I had a temp ileostomy then went to a J-Pouch, which worked well but ended up needing to come out, due to complications. In June got my permanent new side kick (right sided stoma) . I can tell you I have never felt better and living life normal again. I did pack on the pounds, but think it was from being so happy I could eat again, PLUS I did not exercise, you know running to the rest room 30 times a day, LOL. I have started in the gym and eating better and I am where I should be for weight. The pain will go away and in time you will come to accept the new friend. It does suck when you have accidents, but everyone has them at sometime in their life. Recently had three in one day, all a MESS, but all I could do was laugh and change of course I just learn from them and move on. I wish you the best and if you should have any questions let me know.

 

[Christie]

Sorry I always use 'stone', its 14lb

 

[Kris]

I went to my surgeon yesterday and the stoma nurse removed a couple of stitches that didn't disolve around my stoma. It felt better right away. It just felt so sore and irritating before. They also "burned" the bubbled up skin right around my stoma with nitrate. I think that is what it was called. My wafer should fit much better now. I didn't have any leaks, but my skin around the stoma was getting sore.

 

[ameslouise]

Hi Kris - Glad things are feeling better for you!!

- Ames

 

[CDDad]

Are you using any barrier ring? I had the same problem of sore skin until I started using the Hollister Adapt ring under my wafer. If the soreness persists you may want to try it.

 

[Kris]

Joe, I use the paste, but I haven't tried the ring yet. I'll have to try it. I also use the same two piece hollister system you do. Today I am trying the Coloplast two piece that sticks not locks. Not sure I like it. I like that it sits flatter, but it's hard to line up and attatch. The filter doesn't work any better. I read before that you change your bag everyday, so your filter will work. I'll have to see if my insurance company will allow that many bags in a 30 day supply. The supply company was pretty greedy about how many they sent me this last time.

 

[CDDad]

From everything I have read in the last 11 months, chuck the paste. There may be some special reasons to use it, but I don't know any. When I first started, I could not figure out how I was going to cut the wafer hole perfectly to match my kinda oval stoma. I was getting the sores, and than I read above the barrier rings, have not had a problem since.

With my insurance company, I just started ordering the extra bags, so far so good. I use Edgepark online, and they bill my insurance.