Urgent Ileostomy.

[karma_hunden]

Hi,

So I was diagnosed with crohns on Jan and I had sugery were part of my colon and ileum were removed. I was good until April which for some reason I dropped back into a flare up except with a twist...I had an anal crohns imflamation.

Basically now that they did the colonoscopy they say my anus and colon are pretty much destroyed...with ulcers,etc...the GIs and surgeon suggested that the anus could probably reheal but would need a brake (ileostomy)...the colon however they give it for dead but still say it holds hope that with ileostomy and remicade it can heal or be controlled.


Their options are mostly to take off my colon completely but I am not too fund of that idea, plus I have faith beyond medical statistics.

 

[Nyx]

I'd definitely try for the temporary ileostomy and the remicade and see if they can resect you later. Mind you, once you get the stoma you may just want to keep it! I love mine

 

[Jeff D.]

I would definitely go with a temporary ileostomy. They can always take your insides out later but they can't put them back in. There is a real possiblilty that in 10 years or so doctors will be able to use stem cells to heal the intestines and fix scar tissue so I would say hold on strong to your insides and give them a nice rest. Even though I'm going through so much right now with my brand new ileo I would still get one in a heart beat.

 

[ameslouise]

I agree - go for the temporarily ileo to give things a chance to heal. You will feel tons better. And better to make the decision for yourself than to have it made for you with a rupture. That's what happened to me and trust me - a ruprtured colon does NOT feel great.

Good luck - Amy

 

[Nyx]

A ruptured colon hurts really bad!! I agree with that!!!

 

[acg101]

Hi Karma, I am facing the same decision now. I have a surgery date for July 9th and the surgeon strongly recommended Total Proctocolectomy which means I will have a permanent ostomy. Because I have Crohn's they dont recommend jpouch.
Nonetheless, as Jeff and the others said above, you need to weigh the pluses and minuses because onece its out its no coming back. Also I have dysplasia which was another factor

 

[karma_hunden]

Acg,

So you're getting a permanent ostomy? Didn't the remicade, cemzia, etc work for ya? Those are somee strong meds...I'm starting on humira soon and I have my hopes on that.

I got my temporary ileostomy done on june 11th and another surgery on the 16th because apparently I had an obstruction...I know, fantastic (sarcasm)...anywways, I'm getting used to it. Does anyone know how to handle farts? They seem to come out whenever they want and they are just to quick for me to even whistle or cough...today at the doctors appointment I had my first embarassing fart moment...geesh...God I hate this.

Also, I'm 22 and I'm young and dating...there are moments I might want my stoma to be inactive...besides not eating for the whole day I have no other ideas or tricks to sort of costipate myself just for a particular occassion...any advice? Lol

Thanks guys!

 

[Jer's Girl]

I had an ileostomy done in April and I am back at work and doing well. I am also hoping that this will only be temporary but with me it isn’t certain.

I have had a lot of problems with mine, but I still don’t regret it for a minute. It has given me my life back. The longer you have yours, the more you will get used to it.
I don’t think that there is much you can do to constipate yourself, and if you could you wouldn’t want to as it could cause a block. You can thicken your output up by eating marshmallows, bananas and peanut butter.

Over time, it will be easier to tell when your bag is going to fill up, but before intimate times, or if you are going out just make sure to empty your bag before. Also, using some sort of a wrap to cover it really helps to keep it close to the body and also out of your thoughts. I recommend the raps at Ostomysecrets .com. They work great for every day use, and you can re-use them until it is time to wash them, so you don’t have to have a bunch.

I don’t know what to do about the gas. I don’t have a lot so it hasn’t been a major problem for me, but I have had a few embarrassing moments. I guess you just have to be able to laugh at yourself in those situations. The gas problem will get better over time, or so I have heard.

Good luck to you! Lots of us are on this journey together, so at least you are not alone.

 

[acg101]

Karma_hunter - as a matter of fact I am getting next week (friday) a permanent ostomy. My Crohn's is in my sigmoid , decending colon and rectum so I decided to just take it all out and not deal with likelyhood of additional surgeries. Remicade worked about 1 year out of 3 and cimzia worked "great" to a point that it healed me so fast that it caused blockages but it reduced my pain from constant 5 to 8 to 0 to 2 and I changed my diet to glutten free. I can not handle prednison.
I wish you all the best!

 

[Vivvian's Mommy]

I have an ileostomy.I have had it on and off since I was 13.I am now 25...my last surgery in 2004 they decided to make it permanent.I have had 4 different ones.I had been holding off on getting my rectum and the rest of my colon removed for a while even though the doctors said it wasn't getting reattached.Then in 2007 when my husband then finacee was in Iraq they had to remove the rest as I had internal bleeding.I was actually trying to hold off till he came home to have the surgery.But anyways as far as farting goes mine is more like bubbles popping and it kinda sounds like my stomach is growling.Thats what my husband first thought when we first started dating and it started farting.I was so embrassessed by it.I told him the truth though.But it does work as a good excuse.LOL.If you want when you are about to go out just don't eat for like an hour before.Don't use straws or eat leafy greens like spinach and cabbage...Basically anything that you know gives you gas.Carbonated drinks and beer/alcohol are big things too.Chewing gum doesn't really help either.I don't if this helps at all...But I hope it did some.

 

[CDDad]

I also had my Ileo done in April and I'm getting pretty used to it. I have not had one leak so I consider myself pretty lucky. The worst thing that happened is my pouch fell off once at home early on. I probably did not have it snapped on well.

Now that I am back at work for a few weeks, I wear the Hollister belt to make sure the pouch never falls off! It also helps to hold the weight of a filling pouch.

As for noises, for the first few weeks, the noises seemed so loud. It has definately calmed down. Plus, the arm or hand over the ostomy does work to muffle the noise. I just used that trick at work recently when my ostomy was noisy and some people were in my office.

-Joe

 

[semicolon306]

Had the same situation when I was younger, but I had colitis. They removed my colon and left my rectum. The gave me an ileostomy and then found out I had severe ulcers in my rectum and they wanted to remove it completely. Also was NOT to happy with the idea, so went to see other dr's. At that time these medications were not out or being used in my area. Since it was thought to be colitis they did a pull through and a j pouch. After 17 years or so, they found out I might have crohns now, and the J pouch needed to come out, since they are not recommend for people with crohns

Since the surgery I have had no pain at all, like prior to surgery and I am much happier only emptying the bag 4 times a day, rather then going 8 - 20 times a day. I am much happier, but it can really be a lot to deal with emotionally and mentally. I really think that having one in the past help me this time. I really had to choice to get mine, it came down to life or death, but if I would have know how I would have felt I would have done it sooner.

Again I never placed on the meds and I would suggested meds before surgery, and trying other things, such as certain diets.

Wish you the best and know we are all here for you, as support

 

[merrywidow]

if you need more in depth reading and info, then read "surgery time" by kello its in the treatment dept,

 

[merrywidow]

here is the link
http://www.crohnsforum.com/showthread.php?t=5618&highlight=surgery

 

[AmyWooden]

Hi Karma, I am going through a similar situation at the moment.
Crohn's has destroyed my colon, rectum and anus. My surgeon has taken a conservative approach and gave me a loop ileostomy with hope that my colon will heal with complete rest. So far this is not the case, but it has only been 2 1/2 weeks.
I will more than likely need a total proctocolectomy which I'm not happy about, but the pain and cramping would be nice to get rid of. I will continue with Remicade. In fact I go today for the first time post-surgery.

Please keep us posted on how you're doing!

Amy