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Crohn's Disease Forum » Surgery » Stoma Subforum » Is this the beginning of the end?


02-27-2014, 05:56 PM   #1
wannarun1
 
Join Date: Dec 2013
Location: chapman, Kansas
Is this the beginning of the end?

I'm scheduled march 5th to divert the lower 35 cm or so due to my bum/colon being stubborn and drug resistant. I have a peri rectal fistula also. The concept GI and surgeon said was to divert the fecal stream and let it heal then reverse the stoma. After my perianal disease is controlled they will do surgery to fix the fistula. I'm ready to get my life back somewhat. The surgeon said I would be able to run again after I heal. Something I've had to give up 2 years ago in attempt to give my colon a break.

I was told that this surgery has a chance of not working. They can't connect good to bad. Then the surgery to make the stoma permanent. I understand. I asked what success rate he has seen and he said about 80%. I haven't had much success with drugs. There are no other options and this surgery is a last resort. I was scheduled for j pouch at mayo clinic oct 2012 and the surgeon cancelled the day before the surgery and changed my diagnosis to crohns. I now feel he saved my life. Lots of anxiety to work through on that one!

I'm anxious about acceptance of others and the impact the stoma will have on my life. Why am I so vain if this is supposed to make me feel so better. Its been 2.5 years of no remission. Maybe to hear some success stories?

Jill

current meds cimzia, vit d, senna, mirilax

failed meds colazal, remicade, humira, methotrexate, was steroid dependant, numerous antibiotics,
__________________
2003 left sided colitis
2006 proctitis, perirectal abscess.
after 3rd surgery left with a rectovaginal fistula
2008 pustular psoriasis, proctitis
2009-2011 remission!!!
2011 left sided colitis
2012 crohns colitis
2013 can't decide for surgical options

Failed meds:
Colazal
Rowasa
Proctofoam
Canasa
Lialda
Remicade
Humira
Methotrexate
Imuran
Cimzia

Lots of prednisone- evil for me. Once I was able to get off that...

Current meds:
Multivitamins
Cimzia
Paleo/scd
02-27-2014, 06:22 PM   #2
DJW
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Hi Jill. I think the thought of a permanent ostomy would freak anyone out. I got mine as the last option left. I'm active in sports. Graduated college and university. It gave me my life back. I hope all goes well.
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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

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Trillium Drug Program:
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Dave
02-27-2014, 07:35 PM   #3
nogutsnoglory
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Sorry to hear that you will need a temp and possibly permanent ostomy. I'm in the same boat right now. I know the fears and challenges but what can you do? You tried everything and this is truly last resort. Hopefully with diversion and treatment it won't be too long before you can reconnect.
02-27-2014, 08:58 PM   #4
wannarun1
 
Join Date: Dec 2013
Location: chapman, Kansas
Thanks for listening... was having a very anxious moment. It's not the end of the world. Just a new normal on the horizon. My grandma has had her illeostomy over 50 years. It was that or die for her. She says it was the best thing ever.

I remember when I was dx uc and GI was saying giving me the run down of progression with surgery about 10 years down the road...in my head I was thinking...she doesn't know me....I'm determined.... I will lick this....teehee...

Looks like I'm gonna try to lick this thing far of what I ever imagined...

Dave- thanks for the encouragement. Glad it gave you your life back.

Noguts- really are you contemplating? What is stopping you?
02-27-2014, 10:36 PM   #5
nogutsnoglory
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Sorry not contemplating, I already have the ostomy. Meant same boat as in I was such a mess and tried multiple meds and surgeries and like you had little choice left but to get the ostomy.
03-01-2014, 05:57 AM   #6
wannarun1
 
Join Date: Dec 2013
Location: chapman, Kansas
No guts- I understand. It is a decision I wish one never has to make. Sounds like you are a fighter!

I met with anesthesia yesterday and had labs drawn. They keep telling me how much better I'm going to feel, my body is working so hard to overcome this disease. I'm not fully understanding how diverting will make that happen. The GI said they aren't really sure either but it has worked well for lots of people. Trust trust trust. On the way to the appt the daycare called and said the kiddos are sick and need picked up. They are going to great grandmas a few days earlier than planned. Hope I don't get sick and get postponed!
03-01-2014, 08:48 PM   #7
littlemama1
 
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I don't have any experience with whether or not a diverting ostomy will help or if it's the 'beginning of the end'. But I have lived with an ostomy for 11 years and have had a full and happy life. I got my permanent ostomy right after my first semester of college and I finished college, went to grad school on a full scholarship, got a job, dated, met my husband (who had never heard of such a thing until he met me!), got married, and have a daughter now. I have even attempted making myself into a runner but I think biking is more my speed The ostomy itself has never stopped me from doing anything.

I had a temporary ostomy for a few months the year before getting the permanent one and I admit that at first, I was totally disgusted by it and felt deformed. But then, I was also 18 and hadn't really prepared myself at all. But a year later I was begging to go back to it. I haven't always loved it, but I've never regretted my decisions. I don't think you're vain... it's a big deal to lose a body part and have the way your body functions fundamentally altered. It's not easy and acceptance and getting back to feeling normal is a process. Don't beat yourself up for having a hard time.

But it's also not the end of the world, and if it ends up being permanent, you can and will adjust and live a full, happy life.
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UC 2001, failed j-pouch, ileostomy since 2003 (age 19)
03-02-2014, 02:06 PM   #8
UnXmas
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I think I can say I'm an example of a stoma working well - so far at least, though I've only had it a few months. My quality of life is massively improved, and my stoma has been relatively trouble-free and I find it easy to take care of - far easier than I thought it would be.

But I think I'm unusual in that I really wanted a stoma, it had been talked about for years beforehand, and I was very accepting of the idea. I delayed it because I thought it was supposed to be a last resort, and that people would think I was crazy for having it when I hadn't exhausted all other options. Now I wish I'd followed my instinct and spoken up and had it done ages ago.

I wish I knew what the secret is in accepting a stoma, if I knew I would share it with you all! All I know is that I just don't feel ashamed or upset about it at all, I don't feel self-conscious about people knowing I have it. It's just another body part to me, one that makes my life considerably more pleasant than it was before the ileostomy.
03-12-2014, 11:22 AM   #9
wannarun1
 
Join Date: Dec 2013
Location: chapman, Kansas
Thank you for your very kind responses. I had my surgery 3/5 and was released 3/7. Life is different and will take some adjusting. Was supposed to get a loop and guess the surgeon decided different once in there. They cut the sigmoid off and stapled it off. Then made my stoma to the left of my belly button. Was told before the surgery a 20% chance the stoma would be permanent. After the surgery the surgeon told my husband there is a 30% chance they would be able to reconnect. Sure hope this works! I feel like my abdomen needs support. Lots of pressure like things could spring out? Does that make sense? I am walking almost every day except for yesterday. 50 mph winds seemed like it could blow me over. Lol.
03-12-2014, 02:11 PM   #10
Nyx
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The pressure and heaviness is totally normal! I felt that way too. Don't worry, once your stomach muscles adjust, you won't even notice your stoma there. Also, don't overdo your exercise. Walking is good, but don't do too much and wear yourself out. It'll likely take you about 3 months to feel "back to normal". I know that sounds like a long time, but this is a major surgery and your body needs to adjust. Good luck with your recovery! Hope it's uneventful
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Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

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