New to being OPEN about my Crohn's Disease

[RealGypsy]

Hi to all my fellow Crohn'ies:

I have had Crohn's for the past 13-14 years and have had 6 Small and Large bowel resection surgery's and a total of 8 open abdomen surgery's. My last surgery was about 30 days ago and I have lost a total of 34 lbs. in the past 60 days and now weight only 111 lbs. at 5' 9" tall.

I have talked to my Dr. about this weight loss and he sent me to a Nutritionist and all the things he told me to eat I can not tolerate like, Milk, Grains, Starches. The ONLY proteins I can tolerate is Chicken and even that hurts.

The Dr. told me that I have only one option left in the near future and that is a FEEDING TUBE and a (Permanent) Colostomy Bag. I know you guys must have heard all this before but I have no other place to turn for advice, All I want is to gain a little weight get some of my straight back to get out with the grand kids and try to make them Happy with what little life I have left to give.

I know I know, BooHoo for me but is anyone else out there going threw this and is there anything I can do to avoid the "LAST STEP"?

Thanks for letting me bending your ear.
Mike

 

[shamrock15]

Mike, you've gotta stop seeing it as the end of the line no matter how rough it seems right now. If you aren't getting the nutrition and can't eat, you've gotta go with the tube. The alternative really isn't pretty. As for the bag, if you are covered for the expense, you may find it a great relief. I had mine for four months and was actually grateful for it. My activity level in sports at the time was the only real reason to want to be rid of it. Now that I am no longer on ice, it seriously wouldn't be a problem. No more hour and a half constipation sessions, no hemmorhoids, you can release gas at far more convenient times. The bag really does save a lot of the embarassment of Crohn's. It is an adjustment, but I think you may just find you get back far more of your life than you have had since the surgeries started.

Hope all works out well for you!

D'Arcy

 

[Awbrey]

Mike,
My mother in law just go a colostomy bag last week after a few horrible years of suffering :-( She is happier than ever and feels great. She said as soon as she got out of surgery it was like a weight was lifted off and she said she felt better than she has felt in years Hang it there

 

[RealGypsy]

Hi D'Arcy.

My 3rd surgery was putting a ileostomy bag and I lived with it for over a year. then there was a problem with the MESH that was holding my abdomen together and the Dr's offered to reverse the ostomy surgery because he felt my GI tract has rested enough, hence Surgery #4. but all threw that year it was a TOTAL NIGHTMARE because of "Culture" In the Gypsy culture poop is #1 TABOO. For that year I was in total salutation and never felt as bad as I did so when the Dr said it was time to reverse it, I jumped for JOY!!!!!!

Did I feel better with the bag? maybe, but I feel it was not worth it. As you can tell I have been threw it all and then some, all I'm hoping for is a few good years and to gain a little weight and to get stronger to be with my family as a Dad and a Grand Dad.

As for right now I am Crohn's free but I'm still healing from my scar.

Thanks for your reply
Mike

 

[xJillx]

Hi Mike and welcome! As my friends have said above, many have found great relief with their colostomy bag. I hope if you do need one, you'll have a better experience (both physically and emotionally) than when you had one temporarily. But you say you are Crohn's free at the moment, so I hope your remission continues and you won't have to face any more surgeries in the near future.

 

[mom2twogr8tkids]

There is a medicine that I was on and I can't remember the name of it to save my life so it may not help much. This medicine increases your appetite and actually causes a positive drug screen (it is NOT an illegal drug) but my suregon prescribed it to me and it helped out alot!!!

 

[shamrock15]

I am really sorry to hear that it was such a bad experience for you. I guess with the relief I got from mine, and have heard it has been a fairly common experience for many of us here that it was pretty much universal. My ileostomy came as a result of a failed resection that nearly killed me, so I was pretty willing to try just about anything at that point. I have learned something tonight. As with Jill, I hope the remission continues and that only good comes to you in the future.

 

[mom2twogr8tkids]

I had the bag for 7 months and I'm doing much better since then. It's kind of a pain when you can't do certain things, however my situation was a little different. I had a huge wound down the middle of my stomach and the dressing from it caused the bag not to fit properly so I had alot of leakage. However I have heard from alot of people who didn't have the leaking problems as bad as I did. Good luck with everything and keep your head up. Pray about it and God will take care of you!

 

[Brindle]

Hi Mike,

Sorry you are having such a rough time. You said as of right now you are Crohn's free. What is causing the pain when you eat??? Have you talk to the Drs about possible allergies? Maybe something like lactose intolerent or celiac. Have you tried liquid meal replacements like ensure? Hope that things turn around for you.

 

[ameslouise]

but all threw that year it was a TOTAL NIGHTMARE because of "Culture" In the Gypsy culture poop is #1 TABOO. For that year I was in total salutation and never felt as bad as I did so when the Dr said it was time to reverse it, I jumped for JOY!!!!!!

Hey Mike and welcome -

Not sure what you mean by this. Can you explain a little further what the gypsy culture is??? What does it mean you were in salutation? I'm confused!

As for the nutritionist, sounds like you need to find a new one. Did you explain that all the foods he suggested you cannot tolerate??

If you do end up needing the feeing tube, I say go for it! It will help you get the nutrition you so desperately need, and will likely give you more energy to be the dad and granddad you long to be!

As for the ostomy - well, you've been there before and I'm sorry you had such a horrible experience. Hop over to the Stoma Subforum and you'll meet a lot of people who LOVE life with their ostomy, myself included. I go most of the day forgetting I even have it. I am literally a new person. And I am now able to be the wife, mother, friend, employee, etc that I couldn't be for several years.

Good luck to you - Amy