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Switched over to the Ostomy Page...

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Posted 5/3/2007 11:45 PM (GMT 0)
I've been a member of the Crohn's disease page, but now that Remicade is no longer keeping me in remission, I have crossed over to the ostomy page since that is were I'm headed.  I will fly to Cleveland within the month and meet w/ GI specialist to determine my fate, but it doesn't look good.  My latest abd CT showed a vaginal fistula which is a new development.

So, any pre-surgical advice would be much appreciated.  You guys know more than anyone else.  I will most likely be undergoing a total colectomy.  Thanks.

Posted 5/4/2007 1:05 PM (GMT 0)
pre surgical advice? TRY to eat as nutritiously as possible, do some exercise if you can. the stronger you are going in, the faster will be your recovery. i was pretty weak so i was actually in the hospital for 4 days prior to surgery just to get "food" into my veins via IV. and this isn't the end of the world, this will be the beginning of your new & improved life!

--matt
Posted 5/4/2007 7:17 PM (GMT 0)
It is scary, I just went through it, and it isn't easy to come to terms with. But everyone I talked to on here and other boards before I made my decision said they didn't regret it, that life was much better. And now I can add my actual experince to it, and life is better! I have had the bag for almost three weeks, and today for a little while, for the first time, I forgot it was even there! I think the best thing beofre surgery is to exercise and eat well, like Matt said, but also try to come to terms with it mentally as much as possible. That will give you one less thing to deal with afterwards.
Good luck!
Posted 5/4/2007 7:29 PM (GMT 0)
presurgical advise, not too sur my surgeries for the CD were both emergencies 1 week apart. I changed my GI after my whole ordeal since I have been flaring on and off with about 2 week intervals between flares since august. He and his nurse practitioner kept telling me it wasnt my CD. They had a ct enterography done and he called me with the results saying the area my CD was active and told me "this means you have Crohn's Disease" I felt like telling him to tell me something I hadn't known for 20 yrs. My surgery is only a temp. ileostomy and once my abscess is gone we are planning to have the resection 6 months from then.. My ct today showed that it is almost gone and all of my fistulas went away. So I would like any advise if anyone has it on resection surgery.
Posted 5/5/2007 3:59 AM (GMT 0)
Ask your surgeon to refer you to a stoma nurse BEFORE your surgery. The nurse will be able to watch you sitting, standing, take into account the clothes you wear, etc and mark the best spot for your stoma. Also ask the nurse for some samples of bags to try out before surgery (to make it more realistic, half fill the bag with applesauce or similar).

Also, write into the consent form that you want your stoma to stick out at least 1 inch or so AFTER all the swelling has gone down. Surgeons often make stomas flush to the skin because they think it looks better but they don't take into account the problems that patients will have with a flush stoma. If your stoma sticks out a bit, stool is better able to go into the bag (rather than under the wafer causing a leak).

Good luck.

Shaz
Posted 5/5/2007 9:24 PM (GMT 0)
Shaz, could you explain that a bit more, please? What problems will we have if the stoma is flush against the skin?

Hi Crohned. I'm over here too... probably heading down this route too. So sorry that your Rem has stopped working.

I.
Posted 5/7/2007 5:54 PM (GMT 0)
My husband will be at the Cleveland Clinic on June 11th having a total colectomy with Dr. Stocchi.  Who are you seeing at the Cleveland Clinic?

Posted 5/9/2007 11:40 PM (GMT 0)

I'm scheduled for tests/etc. on May 14th and then surgery on the 16th.  Big Sigh.  I'm flying out Sunday and honestly can't decide if I'm more anxious about the flights or the surgery.  I don't know where all the bathrooms are en route to Cleveland!  My surgery will be w/ Dr. Stocchi.  I spoke to him on the phone and felt relieved to hear him say that he would put me through all the tests prior to surgery so that I could be 100% sure of the ostomy.  Although, I'm to the point of just wanting some relief.  This surely is no way to live...even if I'm only 29. 

So, I've applied for short term disability and have been off of work for a few weeks, just biding the time, waiting for the travel date.

The nurse told me to expect 3-5 days recovery time in the hosital.  I also am planning on hanging around Cleveland a few days after discharge just in case, the thought of boarding an airplane post surgery makes me want to vomit even now.

And what about my mind?  What's the recovery time for all this sink to in and be O.K.?

Posted 5/12/2007 11:02 PM (GMT 0)
After your surgery you won't have to worry about where all the bathrooms are!
I was mentally prepared before hand, I had alot of time to think about it. But I still got a little freaked out afterwards, but it only took me a few days to be ok with it.
Posted 5/13/2007 11:21 AM (GMT 0)
Hi Ivy

Having a flush stoma means that it doesn't stick out ie it's level or almost level with the surrounding skin. This can cause problems in that it's hard to get a good seal with the wafer.

With a stoma that sticks out, it's easy enough to see where the wafer goes and there's no way the wafer can sit right over the top of the stoma like it can with a flush one if you don't position it exactly right.  If this happens (the wafer covers or partly covers the flush stoma), then it means that when the flush stoma outputs it will be outputting under the wafer, which, as you can imagine, isn't good.  I hope I've explained that well enough so you can see what I'm meaning.

There are special wafers with convexity built into them which are meant to be used for flush stomas. These wafers have a 'dip' around the inner edge so that when placed over the stoma, the dip pushes the surrounding skin in a bit, which, hopefully will result in the stoma protruding out a bit more in the process.

A good stoma should be at least an inch long. This way the wafer can sit nicely around it and the stoma points into the bag and empties everything into the bag. However, you have to remind the surgeon you want it at least an inch long AFTER the swelling goes down. This way he/she will have to allow for this.  A lot of people actually handwrite this requirement into the surgery consent forms.

 

Posted 5/18/2007 12:06 PM (GMT 0)

Shaz032 said...

Also, write into the consent form that you want your stoma to stick out at least 1 inch or so AFTER all the swelling has gone down. Surgeons often make stomas flush to the skin because they think it looks better but they don't take into account the problems that patients will have with a flush stoma. If your stoma sticks out a bit, stool is better able to go into the bag (rather than under the wafer causing a leak).

Good luck.

Shaz

I'm not so sure you really need a full inch, to me that seems extreme, and easy to bruise bump.  I've had 3 revisions since my first ostomy due to the Crohn's disease, and as long as the stoma sticks out further than the lip of the appliance, which is only 1/16 inches, the stoma works well.  I've had them huge and I've had them flush, and a contract with the surgeon isn't going to give you any better results, it's all in how you heal, and how things adjust inside, and sometimes the skill of the surgeon.  Sometimes your stoma is perfect in the first month or two, then because of your own body, it changes shape, size, whatever.  My stoma also changes in size from hour to hour depending on my hydration level. 

Anyway, I respectfully disagree with Shaz, I just don't think many surgeons will "promise" a 1" stoma.  They do the best they can, and hope the stoma comes out well, and usually have a sense of pride when they do, but they can't promise or sign a contract, there's too many variables.    

Posted 5/18/2007 4:04 PM (GMT 0)

Shaz032 said...

Having a flush stoma means that it doesn't stick out ie it's level or almost level with the surrounding skin. This can cause problems in that it's hard to get a good seal with the wafer.

I know some people do struggle with seals around flush stoma's but having a flush one myself I really don't struggle at all. I've had my ileostomy for just over a year now and my stoma is level with my skin at the bottom and about 1cm above at the top!! The only problems I've had are with the skin breaking down around the stoma, but my Stoma Nurse has suggested using adhesives that go around the part of the wafer closest to your stoma and the skins healing up great now :-) The only leaks I've had (3) have been due to my output being extremely thick and it getting trapped under the wafer.
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