Colostomy with or without Irrigation

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LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/6/2011 7:57 PM (GMT -6)   
I have a billion questions going through my head but my GI's and Surgeons don't really have any answers for me that are real life. I am a 26 year old female. I was diagnosed at 10 years old and have been fighting ever since. As a pediatric patient, prednisone, 6mp, Remicade, a few PICC lines and some hospital stays kept me going between yearly flareups. Once I turned 18, it seems like everything has turned on me with the exception of prednisone. I went into anaphylactic shock after several successful Remicade treatments and have developed allergies to any medications with acetemenphen, IB Profen, Asprin, codeine and more. I have exhausted all treatments and have been told by three GIs and two colorectal surgeons that surgery is my only option left. I'm terrified becaus they say "all or nothing" the large intestine, colon and rectum will all be removed. I know it needs to be done but I'm 26, single and have no children. I'm scared that th surgery will keep it that way. But I sleep all day everyday just to avoid the reality of my Crohn's Disease. I know I can't live this way either.
Basically, those of you that have a bag, how hard mentally and physically was it to adjust.
Those of you that have a stoma with irrigation, is it painful for the 'flushing/enigma' that you have to perform each day?
I feel for my lifestyle, a colostomy with irrigation would be better but I haven't gotten an answer from the Drs on whether I have a choice because of how extreme the inflammation is. Please. Anything from people around my age and or situation will hopefully put my mind at ease, at least a little. I just led a very active lifestyle including skiing & wakeboarding (I bought my first boat last summer and don't want to have to give it up because of this), I have 3 horsesand ride one of them regularly and I work at a ski resort in the winter so snowboarding is a must. Being this sick prevents me from enjoying all of this most ofthe time but will a colostmy bag with or without irrigation make it impossible?

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 6/6/2011 10:18 PM (GMT -6)   
Yes, once you've healed you'll be able to do all that stuff and more :)

If you're having all of your colon and rectum removed, you will have an ileostomy. Unfortunately, therefore, you won't be able to irrigate as only those with part of their colon, ie they have a colostomy, are able to irrigate.

Good luck.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 6/6/2011 10:22 PM (GMT -6)   
I'm sorry to hear that you've been struggling for so long! In Chron's they take out what they need to and give you a stoma from there if the rectum must also be removed and if it is in the end of the colon, sigmod or possibly the descending, you may have the option to irrigate. If you are being continually told that all needs to go, you probably should just do that from the start. Because you can have some removed and see how you feel, but it may not be enough and then you have to have another surgery. On the UOAA they have a section devoted to irrigation if that does end up being an option for you. Also its just another forum with people who can help you out as you adjust to the idea of an ostomy. They also list local support groups. You could attend one before surgery; see people living with the bag and how well they are doing.

Me, well, I'm a 26 year old female as well, had my first surgery at 25 in order to save my life and I'm kicking myself for not doing it 3 years ago when I was first told I should. After the initial shock and mourning period, about 2 months i was fine with the bag. I finally felt normal! It was like getting my life back. I finally could go to work, I could go to parties and hang out with my friends, and although I haven't dated anyone since getting the bag, that's more because I haven't found someone I want to date. Lots of people here are married with kids. There are several people outside of this forum that I know of that met there significant others after surgery. Trust me, if the person is worth it, they will not care. Anyone that won't date you or doesn't want to be with you because of a stoma isn't worth your time because they obviously are more concerned with looks that what kind of a person you are. Also they have dating sites for ostomates :) I am having my last surgery next monday to take down my ostomy because I have UC so I went the J-pouch route. I'm excited to be bag free, but i know that if God forbid something happens and my pouch fails, I will not have a problem going back to the bag. Life is that much better with it. Besides the alternative is dying and well, i like being alive. tongue As far as kids go, lots of ladies here have had kids after getting their ostomy. The surgeries, because of being done on the abdomen, can make it harder to conceive, but not to carry. People don't lose babies or anything they just might have to try hard or do fertility treatments, but even then it's not always necessary.

As far as the active lifestyle, TONS of people on here have active lives. there are professional surfers and other athletes with ostomies too. You will be able to do everything you did without an ostomy with one. Absolutely everything. You just have to wait for a little bit while you heal, and for somethings you'll want to take precautions, but really you can do any and everything you want. Actually on the UOAA.org board, a woman who rides horses once got kicked on her stoma and was fine because she wears a convex wafer which gives added protection. Just a bit bruised! you can swim and ski and even play football! And you'll actually feel well enough to do it!

Surgery is scary and trying to find an option that works best for you as well as a surgeon you are comfortable with can take time, but ultimately you will be happier. I don't really know of anyone that would go back to their life and the pain of their disease over having an ostomy. You are in the right place to get some solace. Good luck to you and I hope this gives you some hope *hugs*
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11

LtlMissT
Regular Member


Date Joined Jun 2008
Total Posts : 20
   Posted 6/7/2011 1:31 AM (GMT -6)   
Betsaronie,

Thank you for the positive notes and Info. It nice to hear this from someone else my age and similar situation. I was always the positive kid who fought through this quietly but I just can't do it anymore and am so close to giving in to surgery. I just need to find a surgeon that I like because the two that I have met with are not people who I want performing the operations.
And we are on the sam page about dating however mine is so I don't have to explain why I'm always sick or in the bathroom. I guess the story will change if I have the surgery. I'm sure there are guys out there for us but the good ones left are just so few and far between =\ well, thank you and good luck with your takedown coming up! keep me posted on how that goes!
26 year old Female
Diagnosed w/Crohn's Disease 1995 @ age 10
Flare ups & hospital says: Yearly
Prednisones the only drug my body hasn't rejected yet.
3 Seperate PICC lines - several mos each
Prev Meds: Remicade (anaphylactic shock), Cimzia, 6mp, pentasa, asacol, humira + many more. I've been told I have no other options than surgery, "all or nothing" they say.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/7/2011 9:57 AM (GMT -6)   
Always Hoping, you've been through so much. I've been on a lot of the drugs you've had and like you, I got to the point where prednisone was the only thing that worked. That's a lot of hospitalizations, picc lines etc.

I'm older than you, so won't try to speak as a peer, but being that sick is going to interfere with meeting someone, having kids, being in a relationship etc more than having an ostomy bag is going to interfere. The thing that's hard to imagine when you're so used to being sick is that you'll feel so much better. You'll be able to do more things, you'll look healthier, you'll have more energy, you won't be worried about bathrooms every time you do anything, etc.

I am in a stable relationship (although I was already diagnosed when we met, but not as sick as I got later), and before surgery I was a bit worried about the pouch's effect on intimacy etc. My partner pointed out the effect of my fatigue, skin issues, prednisone, etc and she was right, they had a much bigger effect than the bag, which is no big deal in comparison.

I am three months out of surgery, still not fully healed from a complication, but I am amazed at how well I'm doing. On Sat I had a busy day, one that would have knocked me out for two or three days afterward in the past... but I slept well, and woke up on Sun energized and ready to go. I was dumbfounded. Is this how it is for other people? You just get one good night's sleep and that's enough?

And what I tell all my single friends -- it is hard to find someone good, but you only have to find one.

Oh, and don't think of surgery as giving in..... the way I started thinking of it was that my heart, lungs, liver, kidneys etc got together and voted my colon off the island. I saw a picture of my colon after it was out, and I'm so glad to have that thing out of me. So grateful the surgery exists....

If you have a billion questions, ask some more of them here..... this list is great, really helped me through
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/7/2011 1:52 PM (GMT -6)   
Boy you are an ACTIVE person! I am also much older...BUT i was 18 when diagnosed and ran the gamut of meds that worked for a little while. I was 30 when I had emergency surgery for ileo #1. Had that reversed but found that quality of life is better with an ileo so I elected to have another. I have since had a proctocolectomy (removed colon/rectum/anus) with end ileo and couldn't be happier.

This of having an ostomy as the 'good guy' detector. If they cannot handle it or be thankful that you are able to enjoy ALL those wonderful activities, then they don't deserve YOU:)

I am able to kayak, run, go boating with my family (I stick with being towed on the tube but you'll do fine wake boarding!) and skiing is a blast now that I never worry about the bathroom...and for me riding has never been better now that I don't have a handful of setons in my butt!!

When you find the surgeon you like ask them if they have patients who are willing to meet with a new patient considering an ostomy...sometimes being able to talk on the phone or meet in person is a great help.

(((HUGS)))
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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