Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Looking for some help!!!!!


07-22-2013, 04:55 PM   #1
nmgonzo
 
nmgonzo's Avatar
 
Join Date: Apr 2012
Location: Adrian, Michigan

My Support Groups:
Looking for some help!!!!!

I have a long history of Peri anal disease with many fistulas. Currently with 8 setons in place. Have tried Remicade, Humira, Cimzia, Azathioprine. Saw the surgeon last week and going ahead with ostomy surgery. Now the big decision is to go temporary or permanent? Oh, and anal stenosis along w/the fistulas. Just wondering for those who have gone permanent, do you have any regrets? Those that have gone temporary, were there issues that caused you to go permanent??? Any advice is appreciated.
07-22-2013, 05:05 PM   #2
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi. I've got a permanent ileostomy. No regrets at all. I had years of perianal disease. My surgery came after I nearly bled out and died in the hospital. After surgery I got my life back. Went to school, worked, started playing hockey, softball, golfing and cycling. Before surgery I couldn't do much of anything.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
07-22-2013, 05:28 PM   #3
mflaum
 
mflaum's Avatar
 
Join Date: Nov 2012
Location: Redondo Beach, California

My Support Groups:
I've got a permanent colostomy after a doctor found a cancerous tumor in a perianal fistula. Didn't really have a choice to go temporary. To be honest, it's still talking time to get used to the bag. I still don't like it, but I would hate to go back to the way things were before. Life is better now than it has been for the past 10 years.
07-22-2013, 08:53 PM   #4
dgg
 
Join Date: Feb 2011

My Support Groups:
Hi nmgonzo. I can relate to you... been suffering with horrible fistulas that won't heal up even after years on remicade and azathioprine. I decided to have a temporary stoma and it's been almost 4 weeks since I had my ileostomy procedure. My surgeon wanted to try a temporary option first since she feels that there is hope that it can heal up and be reversed. She will also likely try an advancement flap procedure to try and close up the fistula (I have one internal opening that branches out).

I do have to say that I am getting used to my ileostomy and if my fistula heals up I will be thrilled. I would much prefer my ileostomy to the pain and discomfort of my fistula. I was told that a loop ileostomy is easier to reverse than a colostomy so we tried that option. Good luck and hope you find relief from your fistula soon!
07-23-2013, 12:48 PM   #5
smallfry
Senior Member
 
smallfry's Avatar
 
Join Date: May 2012
Location: Ontario

My Support Groups:
Heya! I love my temporary loop ileostomy!!!!! It has saved my butt some extra pain and things are slowly healing. I got my temp to rest my butt from abscessing/fistula and sinus tracts in my rectal vaginal septum and it's the best thing I ever did and I wish I did it sooner!
So sorry to hear you have 8 setons! I'm sure your butt would love the rest!
__________________


Crohn's disease since 2001
abscessing/fistula since 2006
seton placement for 8 months
4 cases of crohn's related iritis


Diverting Loop Ileostomy Sept.19 2012
Proctocolectomy April 16th, 2014 and off all major meds

Meds
Past - asacol, prednisone, imuran, Remicade from 2001-2008, flagyl, cipro, Humira 2011-2013, 10 months of IV meropenem
Current - T3's, prozac, clonazepam, probiotics, caltrate plus, multivitamin, vitamin D
07-24-2013, 05:20 AM   #6
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
I had a temp ileo due to small bowel disease, had it reversed and a year and a half later ended up with another. This was also supposed to be temporary but the docs are now recommending i keep it rather than reverse and get another etc etc. So for now its permanent - at least until some new medications come along. Its much better having one than practically living in the hospital - the only problem is I have now developed perianal disease - even though I'm not even using my bottom!!!! Very unfair. Hopefully these problems will be temporary because I'm not sure what else they can do for me since no medications work. I think most people with perianal disease really appreciate their stomas.
Good luck with it all,
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
07-26-2013, 10:15 AM   #7
nmgonzo
 
nmgonzo's Avatar
 
Join Date: Apr 2012
Location: Adrian, Michigan

My Support Groups:
Thanks for all of your input. I have decided to go with a permanent colostomy to put an end once and for all to the issues down below. I have been dealing with fistulas and abscesses for about 15 years and I am just done!!!! I am starting to think about all the things that will be different in a positive way. I was out at the store yesterday and had to run to the bathroom 3 times in one store. I honestly can't wait for this change!!!! Sometimes we get used to the little (or big) inconveniences that go along with this disease and don't think about how life could be without them. I am now looking forward to this new chapter in my life.
07-26-2013, 02:03 PM   #8
723crossroads
Banned
 
Join Date: Jul 2012
Location: USA

My Support Groups:
Thanks for all of your input. I have decided to go with a permanent colostomy to put an end once and for all to the issues down below. I have been dealing with fistulas and abscesses for about 15 years and I am just done!!!! I am starting to think about all the things that will be different in a positive way. I was out at the store yesterday and had to run to the bathroom 3 times in one store. I honestly can't wait for this change!!!! Sometimes we get used to the little (or big) inconveniences that go along with this disease and don't think about how life could be without them. I am now looking forward to this new chapter in my life.
Best wishes to you and hope all goes well! God bless!
07-26-2013, 11:04 PM   #9
mflaum
 
mflaum's Avatar
 
Join Date: Nov 2012
Location: Redondo Beach, California

My Support Groups:
You've got the right attitude going into this which will help you with your recovery. If you don't know about this company, I highly recommend their wraps. I find them quite comfortable and its nice knowing your bag is secure against your body.

http://www.ostomysecrets.com/
07-27-2013, 08:22 AM   #10
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
From what I've learnt from others on this forum a colostomy is a lot easier to deal with than an ileostomy so its a good way to go if you have the option. Unless your bowel and rectum are removed there is no reason for you not to have it reversed at a (much) later date if everything heals up and new medications are developed. In the meantime it sounds like you have a great attitude. Keep us posted with how it all goes and remember we are here for any advice, shoulders to cry on or better still to share a laugh and with.
anna
07-27-2013, 11:29 AM   #11
Misty-Eyed
Forum Monitor
 
Misty-Eyed's Avatar
 
Join Date: Feb 2010
Location: United Kingdom

My Support Groups:
I feel like have a permanent ostomy is sometimes easier to deal with mentally. Especially if it's planned. You know that it's going to be forever and so you either accept it and get on with it or choose to hate life forever. I decided to accept mine and used the time between the decision and the time of my op to find out all I could about ostomies. I got a fake stoma and got samples of bags so I could get used to what they were like. It was a bit of a shock when I first saw them but I'm glad I did this.

Obviously I never knew how I would actually feel about having one until I had one. After my surgery I kept waiting for my emotions to kick in and be upset about it, but honestly it never came. I'm so glad I prepared emotionally because accepting it was easy - for me at least.

I haven't looked back since having mine. I can't help from feeling a bit smug when family member and friends complain about constipation or diarrhoea because I simply don't have to deal with it anymore! Not having the feeling that you need to go to the toilet is the best feeling ever! My bag is just something that's normal to me now. Once you find a bag that suits you, you can just get on with things!

Are you having your rectum removed? One thing I would say to prepare yourself if you are, is healing issues down there if you are. I had quite bad crohn's in my rectum and the area still hasn't healed and I've had to have some plastic surgery to try and fix it. I still don't regret anything though. My bum looks a LOT prettier than it did Good luck!
__________________
Michelle

'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
08-04-2013, 03:54 AM   #12
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
Hi,
I have a permanent colostomy, but have less than 5 inches of colon due to earlier resections. Like you I suffered terrible perianal disease. After 10 years of painful pusy bottom my surgeon and gastro said I'd reached the end of the line and I had a non repairable undercarriage.
Found it very difficult to come to terms with especially while waiting for the surgery. It has now been 12 months ( in 14days) and. Can look back at my life pre ostomy and remember how awful it was and wonder how I ever coped. I think knowing it is forever is less stressful, as I now have a barbie butt, I just have to get on with it.
__________________
__________________________________________

: Janette


I meant to have Jano as my user name, but did a typo!
08-04-2013, 05:35 PM   #13
Samboi
Senior Member
 
Samboi's Avatar
 
Join Date: Jan 2012
Location: Australia

My Support Groups:
I have a temp ileo due to severe and rather barbaric perianal disease.
Whilst my reversal is soon - I am resigned to the possibility that my next Stoma, or perhaps the one after that will become a more permanent fixture.
I have a very pampered bottom to try and prevent this - but ultimately I can't stop the disease manifesting where it will.

I had significant psychological issues getting used to it.
The biggest hassle has been traveling with all my equipment.
And I have had some very very messy moments and amusing accidents (never funny at the time - always hilarious in hindsight!)

Good luck with yours.
__________________
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
08-07-2013, 01:03 AM   #14
nmgonzo
 
nmgonzo's Avatar
 
Join Date: Apr 2012
Location: Adrian, Michigan

My Support Groups:
Misty-Eyed- I am having the rectum removed. I was worried about how it would heal up. I am looking forward to this new chapter in my life. I have good family support and my husband has been amazing! That is a great idea about the fake aroma! Where did you get it? I assume I could get online and find one. I have been doing lots of reading, trying to learn all I can. Thank you for sharing with me!
08-07-2013, 09:58 AM   #15
sam357
 
Join Date: Aug 2013
Location: Hampshire, United Kingdom

My Support Groups:
You poor thing!!

When I had surgery for my abscesses I had a colostomy at the same time. I am surprised that this has not been an option for you sooner?!

When I had my surgery I was told that the colostomy was temporary, however all that means is that the doctors did not remove anything during the operation.

My advice would be to have a temporary ostomy. I say this because then there is always the option to be reconnected if everything gets better. Also just because the doctors call it a temporary ostomy it is in fact permenant! It can stay there for the rest of your life if it is needed without any further ops.

Just take your time and speak to lots of doctors before making your final decision!

Good luck!
08-08-2013, 01:26 PM   #16
Misty-Eyed
Forum Monitor
 
Misty-Eyed's Avatar
 
Join Date: Feb 2010
Location: United Kingdom

My Support Groups:
You are welcome! I actually had a tiny rectovaginal fistula before my panproctocolectomy and when my surgeon took my rectum out, a chunk of vagina wall went with it! The plastic surgery was to repair the wall in my vagina and meanwhile they put me on Humira to help with the healing. Saw my surgeon the other day who said it was a success and that the area where my rectum was has healed up too! Wooo! He asked me if I regretted having my rectum removed and I said I don't regret anything. I've still been able to maintain a completely normal life since the panproctocolectomy - minus attempting to sit on a bike haha!

I'm very glad that you have a strong support network and are feeling positive about it. You'll have low days, it's normal after all. But I hope in general you'll feel like I do. I hate it when people pity me... it's like why do you feel sorry for me? My life is awesome, thank you very much! Also in a weird way I see the 'output' differently to what used to come out of my bum. On the rare occasions that I get a leak, it's not ideal. But I'm way less embarrassed about it than if I had 'an accident'. I guess it's maybe because people are supposed to be able to control their bowel function, where as with an ostomy you can't.

I got the pretend stoma from my stoma nurse but I think it originally came from convatec. The bags that came with it were HORRENDOUS though so my stoma nurse gave me some novalife bags by dansac which were what they use with new ostomates. You can order samples from most companies though
08-10-2013, 08:07 AM   #17
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Michelle I so agree with you about viewing the output differently from normal poo.
Mine is just undigested food mixed with bile and cups of tea.
I actually didn't even think it smelled that bad.
Unfortunately my husband told me the other night it does.
What do they say about people who don't think their $#[email protected] smells????
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Looking for some help!!!!!
Thread Tools


All times are GMT -5. The time now is 11:13 PM.
Copyright 2006-2017 Crohnsforum.com