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So, is it the "Best thing you ever did?"

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Posted 4/4/2005 11:42 PM (GMT 0)
My name is Cindy, and I'm a moderator on the CD board. I had surgery in Jan. and now have a colostomy. Am told "temporary". 5-7 years. (not sure what part of that is temporary!)

When I was making up my mind to have surgery, I was told by many in the medical proffession that there were all these peeps out there that would tell me that "this was the best thing they ever did."  I'm still looking for those peeps! I have yet to meet one. So I thought maybe I would find someone here!

I am getting use to the whole thing. but it still bites. I was also told that after awhile I may not even want to have it reversed. yeah....right. Wonder what that Doc was smokin? lol

I see the surgeon tomorrow for a final visit..... for now. We are gonna discuss his original statement about the 5-7 years. My Gi thought that was a little extreme and I tend to agree.

Take care!

 

Posted 4/4/2005 11:49 PM (GMT 0)
Hi I am new to this site, I have Crohn's  and now a ileo since August 2003.  I will not be having a reversal so I have had to learn to live with my ileo.  I have to say that it has made my life more liveable!  It has given me back my independence and has let me do things that I have not been able to for years.  It is an ajustment, but I like to look at it as different plumbing! tongue    I feel better than I have in years and no one would ever think that I have an ileo.  I am 37 and married with two children and it does not effect them in anyway, I just have more energy...if you have anymore questions I would be happy to talk to you, just email me...wishing you all the best!

Barb

Posted 4/8/2005 6:02 AM (GMT 0)
Cleo,
It IS the best thing I have done for myself ever!!
Sure it took alot of getting used to but my live is sooooo much better now!
Posted 4/8/2005 11:34 AM (GMT 0)
Well, it's nice to know that wasn't total bull they were throwin my way! I'm glad it has worked well for both of you! MY problem is I'm just a hard head! When I think back on what it was like before, things start to make more sense. It is taking some getting use to.
Posted 4/8/2005 2:21 PM (GMT 0)
Yes it will take some getting used to.

What did your surgeon say about the 5 - 7 years ? Sounds way too long to me too.

As you know we are here for ya and the only stupid question is the unasked one, so feel free to either post them here or If you would like you can email me at [email protected]
Posted 4/9/2005 7:23 PM (GMT 0)
I would say it's worked well for me- I had my ileostomy made in 2002 and it was supposed to be temporary, but the Crohn's hasn't gone into remission in the bowel I have left so it's 'permatemp' now :D

All my issues with the bag are to do with vanity- practically it is far better than sitting on a toilet 25+ times a day with the pan looking like a scene from the Texas Chainsaw Massacre. I can't complain really when I think what I can do now that I never could with active Crohn's colitis.
Posted 4/9/2005 7:57 PM (GMT 0)
The surgeon backed down on the 5-7 year bit but informed me that I would have to have surgery to fix the fistula that I have first.

I see him again in 3 months and he is going to check out the fistula and see how it looks. Maybe we'll both be suprprised and it will be gone! (wishful thinking!)

I have no symptoms at this time. Surgeon says it's cause they bypassed the rectum and gave me tjhe colostomy.

he said "you need to have all your ducks in a row before we proceed." There just always seems to be that one stray duck! eyes
Posted 4/13/2005 6:41 PM (GMT 0)
Hmmm, I'm not sure if it's the BEST thing I've ever done.... My first colostomy in 2001 was a surprise and totally devastating. So I was overjoyed when I had it reversed in 2002. But then I suffered for a year with pain and constipation. I could barely believe my own ears as I begged the surgeon to put the colostomy back.

Now I have a new perspective on life with colostomy #2. It could be worse, I could still be in pain and struggling with bowel problems; tied to the house and bathroom. It's all a trade off and has lots to do with how you choose to view it. Is the glass half full or half empty? In my case it's half full and I'm glad I did it.
Posted 4/16/2005 1:40 AM (GMT 0)
It is hard to say something you wish you never needed in the first place is the best thing you've ever done. But if I could go back in time, I would have had the surgery sooner. I was diagnosed with crohn's in 91 and had surgery in 93. I would love to go back in time and have the surgery a year sooner than I did and get that wasted year back! The ileostomy gave me my life back...yeah, it stinks, and I can't wait for the low rise jeans to go out of style....but I love being able to eat again and not take so many meds! Hang in there, your ducks will get in their row. Enjoy feeling better for now!
Posted 4/17/2005 2:44 AM (GMT 0)
Just like everyone else ,I didnt want it done, but I am glad I did, now I am ready to have it permanent so I can really feel good,  and get rid of the fistulas since the D#mn things wont go away on their own.   I really hope you can get reversed sooner. I'm glad you are adjusting a little better, it's a hard thing to deal with, it made it easier for me because i had it done laperscopic and i recovered so fast, they brought me a regular meal after i was moved to my room, and it was so cool to eat and not have the cramping and urgency.

 

Posted 4/26/2005 2:04 AM (GMT 0)
Cleo,
i may be a bit different here, since i had UC and had j-pouch surgery and have had Clyde here since November 16, but i would do it again in a heartbeat. This of course knowing mine will be reversed. Though because of the pouch-vaginal fistula (it sent me down a really dark road, just horrible the discharge of mucous since i still had intestine hooked to it and smelling like a toilet all the time) i was told i may never get reversed. I had almost totally resigned myself to teh permanent when my surgeon switched tracts on me. In feb he said he was confident they would get it to heal. Now they just did another dynamic proctogram and the little bugger healed! 5 days before fistula surgery....so they say. I have to wait a month, do another test, then if that is okay, i will be reconnected. But i want to give you hope that they can and WILL heal. If you need surgery,so be it, but it will heal and before you know it, you will have ALL those darn ducks in a row, and not one would DARE to stray!
~Eileen
Posted 5/1/2005 8:55 PM (GMT 0)
Well, I'd say it was the best thing that my doctor did!

Not an ideal route of course, but compared to the active disease, it's a godsend.
Posted 5/2/2005 10:22 PM (GMT 0)
I've had my ileostomy for 15 years and it definitely was one of the best things I did for myself.  I fought having surgery.  I was hospitalized, losing a lot of blood, hemorraging from the vaginal fistula and all of the blood in the colon, etc.  I couldn't go anywhere because I had to be near a bathroom.  I never took my children on picnics, etc.  I missed out on a lot of life, so I eventually agreed to have my colon and rectum removed. 

 

Once I had the surgery, I became a free woman!  My children are all grown now so I do a lot of traveling...even to Europe.  I swim all of the time, been snorkling, parisailing, etc.  The only thing I can't do is move my piano during spring cleaning! tongue   Also, the surgery gave new meaning to the term "Bag Lady"! devil

 

So, give yourself time and keep looking forward to the life ahead of you.  It really is wonderful.  Before you know it, your colostomy will be "normal" to you.  For me, it's like this is the way I've always been.  And, I'm so thankful for the surgery.  If I had lived in a different age, I would have been six feet under!  It has given me 15 years of a great life and I expect to have many, many more years on this earth. yeah  

Posted 5/23/2005 9:03 PM (GMT 0)
Cleo,

Well today is my first day home from the hospital.  I have had CD for 20 years, spent the last 5 in remission drug free and then wham in 10 months not only a flare but now a colostomy.  Mine is said to be reversible in possibly 4-6 months if the perianal disease heals but talk about a rollercoaster of emotions.  I was emotionally ready or so I thought for this proceedure til I woke up from surgery.  WOW.  2 days later I was suffering with uncontrolled crying and the question of "did I make a mistake?"  I met an ostomite in the hospital and all I can say is she really helped me thru and now while I am still not 100% crazy about all this and find it a bit hard to adjust to I have to realistically admit that not running to the bathroom, sitting in pain for the umteenth time of the day, being able to finish changing my sons diaper before I have to flee to the restroom and having some control over an otherwise non controllable illness is making me feel that if my quality of life seriously improves and it becomes more about the living life with a few bathroom stops in between rather than bathroom stops with a little living in between I might seriously consider making this permanent.  My surgeon however told me I would only have 1-2 years to make that decision that keeping an ostomy temporary for longer than that can cause other problems so you might want to check on the lenght of that ostomy reversal again and verify you aren't putting yourself at risk for other problems.

Lisa

Diagnosed w/Crohn's 1985, 3 small bowel resections, 1 strictoplasty and now Diverting Sigmoid Colostomy.

Posted 6/1/2005 3:39 AM (GMT 0)

Hello everyone,   How is everyone doing?  I had another gastric emptying done today and upper GI tomorrow. Then it is on to the University Hospital in Birmingham on Monday.

Thank you all so much for letting me know about the other test I need done besides these I mentioned. It feels so wonderful to know you have at least a little knowledge when you talk to some of these doctors.

It was difficult to find the new thread confused   this evening. I am on the correct one ???  I hope.  I read back through the old post and picked up some great info .. now that I have an idea of what all everyone was talking about.    Hope all is well!!!!

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