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Upcoming Ileostomy surgery and weight

Posted: Sun Jul 15, 2018 1:33 pm

Hi Everybody

I am new to this page and I have some questions regarding the weight gain/loss after an ileostomy surgery.

I have crohn's since 2009 and my first ileostomy surgery will be within 3 months. The idea is that it will be for 6 months but i have been warned that it might be permanent.

Never had an issue with flare ups that i lost alot of weight. Maybe 1 or 2 kg at most. I

I do have problems with maintaining my weight, especially after the long term prednisone i had 3 years ago. Gained 10kg and only lost 2kg of those. Permanently destroyed my weight loss ability. Sad

I am 176cm and 92kg so obviously i am overweight.

Now i am reading all these horrible stories about huge weight gain. How common is this problem, what chance is there that it will happen to me and is there something i can do to prevent this?

Hope someone can help me.

Posted: Mon Jul 16, 2018 8:32 am

To be honest, I've heard a lot of stories about people gaining weight after ileostomy surgery.  I gained quite a bit after my surgery nearly two years ago, it was somewhere in the range of 30-40 pounds (14-18 kg).  In my case, it was due to the fact that there wasn't much I could eat before surgery, and after, my diet was almost completely opened up.  After a couple of years with limitations, I seriously overate when I was able.  Granted, I really needed to put some of that weight back on, but not that much.

Posted: Mon Jul 16, 2018 3:18 pm

Tire,  never had an issue gaining and keeping on weight after or since my surgery 22 years ago.  Good luck I will be praying for you

chris

Posted: Mon Jul 16, 2018 3:46 pm

I've am on a adjusted FODMAP diet. My dietistion made some changes to it and I have a wide variety of what i can eat. The only things i can't eat are greasy foods, apples, orange and orangejuice, bell peppers, mushrooms,leek and onions, tomatos, any soup or salads. So there are plenty of healthy things left.

I do hope i can eat soup when everythings healed.

Thanks you all the replies.

It gives me a bit of hope that i have a chance that i don 't gain any weight.  Might seem a bit superficial to worry about weight, but i can't help it.

Posted: Mon Jul 16, 2018 5:38 pm

After having an illiostomy for 20 years and looking at your can’t eat food list I would raise the question of not what I can’t eat but why can’t I eat it. And their are tons of option to enjoy food other then the way they list it for you. For example I’m not supposed to eat nuts, but that doesn’t mean I can’t eat peanut butter ( now granted I eat peanut butter in the form of Resses Peanut Butter Cups and that might have something to do with my weight problem ) . So like you can’t eat apples but you could drink apple juice or orange juice you my just have to get pulp free. So it’s always good to ask why you can’t eat something  not just what you can’t eat.

 

Dang now I’m jonesing for A Resses peanut butter cup

Chris

Posted: Mon Jul 16, 2018 5:56 pm

Haha yeah those peanut butter cups are addictive Smile  enjoy it.

The list i wrote in my previous message are things that really gives me problems. Bloody diahrrea and that kind of stuff. So i really can't eat that. But thats okay, it could've been worse. 

My dietisian explained what the diet meant, what fruit en vegtables could cause problems and most importantly why. And i had to switch my pasta and bread to spelt versions. But there are plenty of things on the no-list that work well for me. So i eat them, haha. It helped me alot the last couple of months, sadly not enough to save my colon.

Posted: Tue Jul 17, 2018 7:51 pm

I lost 30 pounds after my emergency ileostomy.  I also dropped more weight after the emergency redo.  However, since I had Maxine redone, I have been able to eat better and have started to gain the weight back.  Not a great amount mind you but I am gaining.  So now I have to keep my eye on it and make sure I don't over do things.  Keep us informed on how you do and good luck to you!

Posted: Thu Jul 19, 2018 11:31 am

I went to the stoma nurse yesterday and I received a lot of information. I also received bags from different brands to test them, since i have a lot of allergies.

I have 1 from coloplast sensura mio 1 piece system for ileo.

I have 1 from eurotec 1 piece system for ileo.

I have 1 from hollister 2 piece system for ileo  and a hollister 1 piece system that is closed at the bottom but she said that the could be used for an ileostomy.

But i noticed that the closed hollister 1 piece system does not have that crunchy plastic lining on the inside. Is there a reason  that the closed one doesnt have that and the open ones do? And most important do you hear the plastic crackle when you wear it?

The surgery is planner for half september. In a few weeks i will receive the definite date.

Posted: Thu Jul 19, 2018 4:00 pm

Are your bags transparent?  I've found on the Hollister opaque bags (with the fabric covering) make a little less noise.  You don't really hear the plastic so much just wearing it, more so when you empty it.  Believe me, nobody will know you have an ostomy if you don't want them to know.  If you have sensitive skin, beware of the bags that have tape edges.  The tape border Hollister ones really irritated my skin.

That's good that your stoma nurse set you up with different sample to try. Unfortuately that is the only way to figure out what works for you. If you have a particular brand you like, get in touch with the manufactuer and ask for samples. Also, most of the big manufacturers will offer care packages that can be very helpful as well, I remember Coloplast's care package being very nice.

Any questions you have, post them on here. You'll get sound advice and reassurance that there are many of us who have been down the same road your traveling now

Posted: Fri Jul 20, 2018 3:15 pm

I think i have the plaque one since it has a thin fabric lining.

Good to know about the tape version, i will definitley avoid that one.

If i have more questions i will know where to post them. Everbody is so nice and helpfull, it's really heartwarming Smile

Posted: Sun Jul 22, 2018 7:31 pm

We gotta take care of each other, this is my way of paying it forward.

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