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Hi everyone, My name is Amy. I am 32yrs old, and was diagnosed with Crohn's when I was 10. My disease has taken me on quite a rollercoaster ride. I had my colon removed 4 yrs ago, and now I have an upcoming ileostomy surgery, to repair a rectal vaginal fistula..I was told this will be permanent. I am still trying to process this fact, and any support would be great!  This is the first time I have ever reached out to the crohn's colitis community, so this is new to me.  I have isolated with my disease for WAY TO LONG!!

 Reply posted for stinnett9621.

amy - sorry to hear you're going through this but happy you are reaching out. i am mal in mid 40s and had permanent ileostomy 10 months ago. of course all the stuff you are thinking and all the nervousness you are feeling are totally real and normal. it's very scary and it will be better when the find a cure. but i feel so much better now and live a much better life. please continue to reach out if you have questions. also, make sure you feel good about your gi doctor and your surgeon and you will then feel more comfortable with your surgery. a good stome nurse is really helpful. best of luck to you!

 Reply posted for stinnett9621.

Hi Amy

I'm a 43y/o male and have had crohns since i was 20. I was told i had to have an ileostomy in Nov. 09 and was devistated. After almost 2 yrs now, it is so much better to deal with the ostomy, then the chronic pain and problems with the crohns. I am also on Remicade. I still feel like peole can tell I have it, but trust me, no one does. There is a great product called Stealth Belt that conseals it perfectly under your clothes. You can find it on the web. I hope your surgery goes or went well. Let me know if there is any other advise I can give you.

Tracy

 Reply posted for stinnett9621.

My daughter just turned 21 and had a ileostomy and colon and anus removal in February. We were so worried about everything but let me tell you, she has never been better. This girl NEVER stops now! She works, has a boyfriend, swims, camps and we jsut got back from a 5 day cruise where she was one of the best dressed women there. She sat in the hot tub, danced, got flipped upside down by a tequila guy in Mexico, danced all night, and not one person would have even known she had a bag.

It was the best thing we did and she is so happy. Yes it is an adjustment but with a good attitude, you will be fine, I promise. She is still on remicade but we can live with that. Its a blessing in disguise, it really is.

Good luck to you and we wish you the best. Jan

 Reply posted for stinnett9621.

Glad you are reaching out and I hope and pray that you are encouraged.

 Reply posted for stinnett9621.

I had surgery to remove my right colon in May, and needed to have a temporary ileostomy.  The first few days were a little hard for me.  I thought I would feel weird, or gross with the ileostomy.  It didn't take me very long to get used to it though, maybe a week or two.  I had less pain throughout the night the FIRST night after my surgery than I had when my Crohn's was causing me pain.  They gave me a PCA pump, but I didn't need it, I did have Torodol for muscle pain every 8 hours for the first 24 hours, and that helped tremendously with the muscle pain.  I went home on the 2nd or 3rd day after my surgery, and I used the vicodan they prescribed for a day or maybe 2 days, but then I was okay with just tylenol once a day for a couple of days, then nothing. I was pretty down and blue for a couple of days, but then I found out that was b/c of the anesthesia. I wouldn't have believed it back when I was in the hospital, so if you don't believe me now, I don't blame you... but my life is A LOT more normal now than it was before the surgery. I've had no issues, or abdominal pain since the surgery.  I had a great surgeon who I totally trusted even after just our first conversation, so I definitely reccommend that you have an excellent surgeon who has experience with the procedure. Unfortunaltely this site really limits the number of characters allowed for our response, so I'll leave it at that for now, and if you have any questions, please don't hesitate to ask!!

 Reply posted for stinnett9621.

My son got his ileostomy due to crohn's at age 21 (now 23). It was an emotional roller coaster to get there, but a much smoother ride since. Everyone told him he would feel better and have a better quality of life but he did not want to believe them. He found out within days how much better he felt and that basically with the right mind set he could do just about anything with his stoma. He had his surgery in Cleveland oh and the enterstomal therapists were amazing. I do believe they made a huge difference in his acceptance and recovery. Hopefully where you are going has an ET department and they will guide you every step of the way. You will find support from people and places you never dreamed of. Look at it as the next step to really putting your disease behind you and moving forward. Life with a stoma can be very good. Good luck. I would be more than happy to share further what we have learned.