My successful ileostomy surgery

Hi,
I haven't posted in this forum in a long time! I used to lurk here and post sometimes. I've had crohn's colitis for 14 years. I've tried all the meds including Tysabri and worms. I felt like crap for most of these 14 years, was a horrible mother, wife and barely went out at all anymore.

Anyway, long story short, two months ago, I had a total proctocolectomy with permanent ileostomy (they take out your colon, rectum and anus). And, yes, I have a bag. I was absolutely horrified by having a bag ... For many years I avoided this route at all costs, even though I was and looked miserable. I was NOT going to have a bag!

One day, my friend broke me down until I actually started considering it. (Her father and a good friend of hers had one, so she kept telling me it was no big deal.) (I had never met anyone with one so to me it certainly was a big deal.) I basically had a mental breakthrough after talking to her. I immediately switched over to the ostomy forum on this site and started asking a ton of questions. I also talked to a few people on the phone. I am 43 years old and I now have a colostomy bag. Oh and the best part is that I don't give a sh$t, literally. I know everyone says this, but I wish I did this 10 years earlier.

I'm not preaching to anyone here, rather I'm just speaking to those who are considering a similar surgery because they are at the end of their rope. I know what it's like to be weak, tired, sick, and just plain unhappy. I know all the medicines, diets and alternative therapies. I'm glad I tried some things, but I wish I took this route earlier so I could have more of my life back.

Good luck to everyone!!! Please post if you have any questions.

hi ep49:
I know exactly what you're going through. I was scared out of my mind to have the surgery, I saw some psychotherapists and got meditation tapes to calm me down before and even during the surgery.

I didn't take the surgery lightly either. I interviewed three colorectal surgeons in my area (Boston) and made a decision. You should consider it heavily because it is a big surgery, but I have to say for me and for most people I talked to, they had to first conquer their emotional difficulties, then sincerely want to have the surgery.

It sounds like you are having a real hard time and are in pain a lot. The drugs never did anything for me but make me worse. I highly encourage you to go to the ostomy forum and do some research. Ask a ton of questions, people are extremely helpful. Dont get caught up in the people who post about their complications. You'll find that most people who had this operation are really happy that they did so.

Feel free to email me as well. My email is in my profile.
Good luck! And, I'm so glad you read my post! (I used to ignore these types of posts because surgery was so far from my realm of thought.)

Congratulations! I am so glad that you've had success with a treatment. It's always so nice to feel better after feeling crummy for so long. I hope things continue to get better for you!

wow were so similar .. I have to say that its been 4 months since my surgery and I am HAPPY.. ya does it kinda stink I have a bag.. sometimes but not for more then 5 seconds.. I am so thankful.. I have my life back and my kids love that I am not sick anymore!

Hi NiceCupofTea:
I remember your name from when I was on the Crohn's board! You were always so helpful! Hopefully now I can be helpful to you.

To answer your questions, no, I am not on any maintenance meds as I am allergic to everything, so, I can't take anything. Yes, I can eat anything now, including fruits and vegetables, which I haven't eaten in years. I am probably overdoing it with vegetables, last night I had broccolli for the first time in years, and probably way too much as my stomach was growling all night. But, I think it was saying, "Thank you!"

I am still only two months out of surgery, but I have a ton more energy, I am happier, and everyone says I look much better. I just feel great overall. In retrospect, I wish I did it earlier, but know that I wasn't ready emotionally. I also have a permanent ileostomy, just so you know.

I am making plans to go to NYC, Disney with my seven year old girl, (I haven't been able to do anything with her, even going to the park was not an option!), going away with my husband, etc., etc. The options are endless! These are things I never did. I am truly a new person.

I know it's hard to get through. I was a total mess before the surgery, and even after the surgery (major pity party for myself for a good two weeks), but once you accept it, it just gets better everyday. And, I agree with Larasmom:

"Great health is more important to me as a wife and mother than worrying about my bag attached to me!!!"

Good luck, and continue to ask questions!
Debbie

its crazy how close our stories are.. I have been very very sick ( Icu.. etc) for the entire 7 years I have had this disease.. HORRID.. perianal abscess, setons, fistuals, vomiting.. anemia .. you name it I have had it.. but I had a Ileostomy On Sept 17th and LIFE is AMAZING.. I have one now.. I run and I EAT veggies.. and fruit. I had went for 4 years without eating any fruits or veggies except a banana. I lived on applesauce and bananas, rice, chicken and that is it.. Fiber was a killer for me.. I hated food.. was very skinny ( still am) In July I totally stopped eating any food.. Lived on G@ gatoraid and then they put me on TPN for the month before and 3 after surgery.. TPN and surgery saved my life. I would not have lived much more then a couple of months if I had not had surgery. I LOVE my bag. its tiny and drainable and I do everything with it. I hide it easy by wearing tight ( size Xsmall) old navy tank tops under all my normal shirts.. no one ever knows its there unless I drink pop.. ha ha then its a floatation device with gas! I have 4 kids and the youngest 2 have only had the sick mama.. they love how I have energy and I did the monkey bars yesterday and they were stunned I even knew how.. ha ha I know I still have crohns disease but I am so thankful for this season of wellness :)

I don't count myself as very lucky in life, but I do count myself lucky to not have had fistulas or perianal abscesses so far - had every other Crohn's misery, but not those.

Alohamomof4 - I too don't think I would be here today if it weren't for steroids and surgery - not that I have had the surgery yet, but I've only been able to defer it because of Pred. When I think of the pain I was in less than two whole days ago, I would've starved to death rather than face that every day.

Grim disease. But I'm truly glad you got your life back. Same goes for the other people this applies to.

I know this thread was started a long time ago but it has insired me to move forward with a proctocolectomy with rectim removed.  I was considering backing out.   I do not have pain but am miserable most of the time. But after reading the post Its giving positive reinforcement to follow through with the surgery but Ill let you know Im scared crapless.

Cindy

Hi Larasmom I'm scheduled Thursday at 12:00 pm I cant turn back now. I will go to the Cleveland clinic in fort Lauderdale. Ill try to start a new topic of my experience once its done. Not looking forward to the bowel prep and pain I don't care what they do once im out of it. : )