Ileostomy in 3 weeks

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So after years of putting it off I have my date for my ileostomy on the 13th of March!

Ifliximab Gave me Glaucoma and allergies tro almost everything
Prednisolone gave me Osteoperosis
Aziathioprine made me vomit

Not many other options considering the latest fistulae is on the outside edge!

Getting sick of constant complications and the morning routine of downing painkillers to get me moving!

No idea if it will be reversable and obviously that sucks as im only 30 and recently single.....

Anyway sorry that was nothing but a MASSIVE moan about not very much!!
 
You have every right to moan a lot. You have been through so much hell and now are undergoing another big operation. My recommendation is to read up and watch videos in preparation for the ostomy. A lot of it won't make sense till you get your hands dirty so to speak but we are here for you to help.
 
Hey thanks for the response!

I dont like to moan there is always someone far worse!

Ive been watching youtube videos of the surgery since I talked myself into having it done, I own my own business which i am trying to sell before surgery as Its kind of taken out of my hands...

I do have a few questions if anyone can answer?

1: I got the impression from the surgeon that they make a decision on keyhole or open surgery? why the decision?

2: I heal quickly and actually after having a 2 inch abscess lanced went back to work the next day albeit a little dopey and fragile. How long should I expect to be unable to get back to normal life?

3: How likely is it that I will have it reversed? is it down to how well the surgery goes? how well i heal down there? is it my decision?

Sorry lots of questions.....
 
The surgeon should be able to confidently tell you whether they can do it laparoscopically but they need to keep their options open depending on what they find. Ie: more disease, difficulty maneuvering.

Expect 6-8 weeks for recovery, you may find for yourself it may be much faster. You will also need to get acquainted with the ostomy bag itself and sometimes it is a quick learn and sometimes a real challenge depending on your stoma, condition after surgery etc.

Reversal will depend on your healing. Make sure they understand you want that option. If they remove your rectum you can't be reversed.
 
I have the same problems. It started with one fistula and every operation caused more to form. I now have six giant fistulas, and the doctors refuse to explore any other avenues of repair. Remicade didn't work. Ileostomy didn't work (and was miserable). Setons made it a pinch more bearable but they eventually tore out. One of my setons actually tore through the flesh during sexual activity (flexed muscle too tight) and caused an outpouring of blood.

The ileostomy was miserable because I am super lean. I have nearly no body fat, and the appliance wouldn't adhere to my flat abdomen very well. Any fluid that leaks under the appliance adhesive will sting and itch like crazy, and the only option is to pull it, clean and replace; not to mention the awful smell and noises. I also noticed holes forming in the intestine that was protruding from my belly.

In short, fistulas SUCK. They pretty-much ruined me. Doctors don't know how to fix them or prevent them, and attempting to do so will probably result in more of them.
 
I'll be keeping an eye on this thread since my ileostomy is scheduled for 3/5, 2 weeks from tomorrow. Like you, my meds didn't work (failed cimzia, remicade, Humira, mesalamine, and others). I've been on and off prednisone for the last 6 years. I'm struggling to maintain 150lbs when my normal weight is 185lbs. Also struggling to absorb iron and vitamin D. They'll be doing mine laparoscopically but my surgeon is refusing to remove the rectum just to keep the door open for possible reconnect in the future. I was told about 3 weeks out of work with recovery in the hospital being about 3-5 days.

I'll post some more of what I learn this Friday since that's my pre-OP appointment and meeting with the ostomy nurse. Stay stong, OP.


HD
 
I just had a bowel resection with temporary ileostomy three weeks ago. Happy to answer any questions as it's all fresh in my mind!
 
Just wishing you all the best, and a speedy recovery!
I'm having problems with a recto-vaginal fistula and its horrible. I hope this helps everything heal :)
 
Hey, ScottBoyd. I wish you well for the surgery and recovery. I am an 'oldie', who had my permanent ileostomy surgery at age 31, 32 years ago. Having a temporary ostomy will leave you vulnerable to abscesses and fistulas in the end section, but you may be lucky enough to heal well and to give it another go with reconnection. Your surgeon is the best judge and the best one to answer your questions.

I adjusted quickly to my ostomy appliances (otherwise known as 'the bag'). The ET nurses, or stoma nurses, are extremely helpful if you experience any difficulties with proper adherence or leaks. As far as 'mess' and 'smell', if you've ever had to change babies' diapers (or nappies in the UK), you won't have a problem with your new situation. The equipment we have available these days will give you confidence that you can go about your daily life and no one will know you have an ostomy unless you tell them. Some of my best friends don't know about mine! And I have had years of horse riding and swimming, gardening and working with children.

So stay strong and optimistic. Better health is in your future.
 
Hi Scott,

Short intro about my case; I've had my first ileo surgery at 14 (14 yrs ago). At the time it was not decided if it were gonna be permanent or not as my diagnosis was not clearly stated between CD and UC. Later, knowing it was CD I decided to not try for a reversal but I found myself having fistula around my stoma site after 10 years which lead me to have a relocation of my stoma site 2 years ago. It's been great for the 10 first years and its going smoothly again since last surgery.

1: I got the impression from the surgeon that they make a decision on keyhole or open surgery? why the decision?
There are various factors that will favorise laparoscopic or open surgery, one of them being the surgeon preference. Mine really prefer doing open surgery as he consider he can perform optimally that way. Like NGNG said, the condition of disease will influence greatly on that matter. The advantages of laparoscopic are mostly related to recovery, its less invasive, but allows less precision for the surgeon work. I never had the option between the two to begin with, now I have to say I don't know which one I would be leaning towards if I could make the choice.

2: I heal quickly and actually after having a 2 inch abscess lanced went back to work the next day albeit a little dopey and fragile. How long should I expect to be unable to get back to normal life?

I don't remember how long it was at my first surgery and I was very weak so I have the feeling my first recovery might have taken forever (who would not feel that way at 14 anyway). The one I got 2 years ago was also an open surgery (which implies longer recovery) and it well rather quickly even though I have had trouble healing because my wound was infected with streptococcus (took forever before they actually read the wound cultures so it took long to heal). Still, even with the infection, I was back in my book at week 2.5 post-op. I think I would have been able to be back at work at week 5 (deskjob). At week 8 I was doing easy bodyboarding. That gives you an idea. Every one is different on that matter but again, like NGNG said, its more the learning process and adaptation that will lead to the optimal 8 weeks.

3: How likely is it that I will have it reversed? is it down to how well the surgery goes? how well i heal down there? is it my decision?
It's always hard to tell. Some people find that the condition they get with there surgery is so good that they don't want to get it reverse. Even with the stoma, some people don't manage getting the perianal involvement under control so the reversal might not be possible. All I can say is give it some times and see how good you can do with this adaptation. Mine has allowed me to have a decent life and with the right appliance, it is possible to feel confident and do pretty much anything you would like.

I hope everything will go smoothly on your side and that recovery will be quick!
 
I had a resection about 3 1/2 years ago. My surgery was open surgery, because I had a section of bowel that was so inflamed that it was too large to be taken out laproscopically. My surgeon made the decision, and I knew upfront that it would not be done by scope.

I remember he told me that with most patients the surgery is done with the scope, but in case they run into a problem they can't handle with the scope they reserve the option of opening you up.

I did not have an stoma . But my surgeon also reserved the option of a stoma if necessary. I don't know what would have caused that to be necessary for me.

It took me 5 weeks to get back to work. It was suppose to be 6 weeks but by week 6 I was totally stir crazy and insisted on going to work.

I hope things go well for you. My surgery was the best thing I ever did. In fact I know I probably would have died without it. I hope things go well for you.
 
Hey thanks everyone for all the responses!

Ecu_drummer good luck with the surgery! I'll keep an eye on what your doing!

Jane thanks for the specific answers! I'm ready and waiting now it's 3 weeks today which is annoyingly far away haha!

Anyway thanks guys

I'm going to start a blog tonight/tomorrow and hoping the surgery will be filmed. (Not that I know what I am doing or wether it will be even remotely interesting lol)
 
The ileostomy was miserable because I am super lean. I have nearly no body fat, and the appliance wouldn't adhere to my flat abdomen very well. Any fluid that leaks under the appliance adhesive will sting and itch like crazy, and the only option is to pull it, clean and replace; not to mention the awful smell and noises. I also noticed holes forming in the intestine that was protruding from my belly.


This is interesting - I have no body fat and my stoma nurse said this is the best way to be in terms of stoma placing. She said my stomach was the best she'd seen, because beer bellies and stomachs with rolls of fat on them don't provide a flat surface for the bag to adhere to. Being thin means they can see very clearly where your muscles are when they mark the place for the ileostomy, making it easy for the surgeon to create the stoma in the optimal location. And I've found my stoma nurse to have been correct as I've had remarkably few leaks with my ileostomy.

Scott - I love my permanent ileostomy. I wouldn't ever want to go back to how I was before. Some people get lucky and ileostomies cause them few problems - it's really not so bad.
 
Hey thanks everyone for all the responses!



Ecu_drummer good luck with the surgery! I'll keep an eye on what your doing!



Jane thanks for the specific answers! I'm ready and waiting now it's 3 weeks today which is annoyingly far away haha!



Anyway thanks guys



I'm going to start a blog tonight/tomorrow and hoping the surgery will be filmed. (Not that I know what I am doing or wether it will be even remotely interesting lol)


I was thinking about doing the same thing, starting a blog. Don't think I'll have them film it, but it's definitely a great way to vent and share what you are feeling. I promise I'm not stealing your idea!
 
Hey unxmas im not ruling it out. To be perfectly honest its not something that worries me I would just like the chance to try without it again!
 
I have to laugh, if Boyd is your last name then we have the same last name and we're having very similar surgeries w/in a week of eachother.

I had some free time and got my blog up and running. Took some time to figure it out but it's all good to go and I've made my first post. There should be a link in my signature but if not here it is http://blastoffcrohns.blogspot.com/2014/02/fighting-this-war-against-myself.html
 
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This is interesting - I have no body fat and my stoma nurse said this is the best way to be in terms of stoma placing. She said my stomach was the best she'd seen, because beer bellies and stomachs with rolls of fat on them don't provide a flat surface for the bag to adhere to. Being thin means they can see very clearly where your muscles are when they mark the place for the ileostomy, making it easy for the surgeon to create the stoma in the optimal location. And I've found my stoma nurse to have been correct as I've had remarkably few leaks with my ileostomy.

This is correct. The thinner flatter abdomens are ideal for ileostomies. The more belly fat there is, the more the surgeon struggles to form a good stoma and the harder it is to get an appliance to fit correctly on the skin.
 
T-minus 4 days and counting!



This time next week I will be getting used to life with a Stoma!



I finally got round to starting a blog!



http://scotts-crohns-story.blogspot.co.uk/


Hope you're doing well as you're counting down the days! I can absolutely let you know that I would do this surgery again in a heartbeat as I haven't had any crohns pain since the operation (only soreness from the surgery). I had my first cup of coffee yesterday and was actually able to enjoy it!
 

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