Surgery on 12/30/2024 and terrified

[ml06]

I am 18 and I have been battling a severe intestinal motility disorder since I was a baby. The disorder has caused lengthy hospitalizations every 2-5 months and has really been screwing with my quality of life. My doctors have decided that it’s time for an ileostomy. I am told that it might be reversible some day but there is a decent possibility that I may be stuck with it the rest of my life. I am so scared about how it’s going to change my appearance, affect my mental health, ability to find a relationship, and whether or not this is even worth it. I am so scared and have literally been crying every day about it since my appointment with my surgeon. If you have any insight let me know! Also, how was the recovery for those of you who have had it?
Thanks,
Maddee

[Mysticobra]

Omgoodness.
You are so young to be going through this.
Give me time to respond.
It's alot for me to think about and reply.
I didn't get my end ileo until I was 60.
And I was scared too.
Mine is reversible. Meaning I can get a j pouch. Which I've had one already but had it removed because it didn't work.
My colon has been removed.
Being much older is kinda easier to accept afterwards

I'll reply with more later.
House is busy.
Please. Don't be terrified.
I know it's scary. And I am not looking at it through
an eighteen year old young person's eyes.
Richard.

[Mara]

I had my ileostomy at about your age....many years ago.....I had ulcerative colitis for around ten years and back then they didn't have medications except cortisone and I got a bad reaction so I really had no choice. I have had very few problems over the decades. I don't know anything about your disorder at all but to spend time in the hospital so often sounds pretty bad so I hope you find that the surgery will change your life for the better!!
Best Wishes!!

[danilynn]

Maddee, I'm so sorry that you've got so much to deal with. I don't have the same issue as you but I was diagnosed with Crohn's disease when I was very young (6) and grew up with medication, pain, numerous appointments, etc. I had my ileostomy surgery when I was 23 and honestly by that time I was ready for something to change because I couldn't live a life with how sick I was. I was so tired of up being up all night in the (dorm) bathroom and being exhausted all the time.

Health-wise, my life since having ostomy surgery has been so much better than it was before it. I've had a few other surgeries but those were because of the Crohn's, not the ostomy. In the 31(!) years since my ostomy surgery I've worked, traveled, dated, got married, had kids, and done so many of the things I wanted to do in life. People can't look at me and tell I have a pouch. The people that know about it are very accepting of it. Ostomy surgery is a big adjustment, definitely, but you get through it.

Good luck to you. <3

[ron in mich.]

Hi Maddee i,ve had an ilieo for almost 40yrs. i got it when i was in my mid 30s, it was rough at first with no internet back then and not much info or people to talk to but my wife and i had a daughter to raise and jobs so i had the surgery and glad that i did, once healed and no more meds, apptmt, or being in the hosp. i was able to live a normal life. Its understandable to be worried but life will be better. good luck

[Shamrock4806]

Make sure the surgeon sticks the stoma out about 3/4" above the skin surface or you'll have a lot more problems if it's flush or near flush to the skin.

I know.

[BillGK]

Hey Maddee, you haven’t ever had a normal life and you are now under enormous stress. Get this done and you’re going to experience life as never before. Once this happens you will have a period of adjustment, and once the transition is in the rear view mirror your concerns are going to melt way because there are good solutions to all of them.

Good luck with your surgery and enjoy a wonderful improvement to your quality of life!!

[JerryNYC]

I had my colectomy and ileostomy in 1963, when I was 28 years old, after years of hell with ulcerative colitis. (Surgery and care were much more primitive then.) What I decided then that in going through this surgery you are exchanging a disease for a handicap. So, the question is how much have you suffered with the disease vs. how much of a handicap will you need to learn to live with. I think you will find that most people are happy to get rid of the awful disease (although Crohn's disease does not let you completely get rid of the disease) but that after an adjustment period post surgery, most people find life far more satisfying with the new (handicap) than with the former disease. The pain and discomfort in the period after surgery is unpleasant but it will end. Although it might take up to a full year before you get back to your healthy pre-disease state. Four years after my surgery I got married and we ended up with 2 children and 4 grandchildren (and are still married to one another). I am told that it is more difficult if you are female and females here may want to fill in issues of having sex and childen after surgery. Around 50 years after surgery I began to develop cramps and pain, mostly due to the formation of abdominal adhesions. These are strips of scar tissues that develop after surgery and can cause pain by pulling on the intestine and other organs in the abdomen. But by the time you are old enough to "enjoy" these adhesions, there will be treatments to reduce the pain. As an aside, adhesions may also be formed in the pelvic region of women who have had surgery on their "lady parts". Also remember that on this site you will always have help from a lot of people who have gone through this.

[dmramirez1027]

I had a colostomy in 2015 due to cancer. Was much older than you, but I was still scared & worried about a lot of the same things. Thankfully, my transition to ostomy life turned out to be not much more that a speed bump. Joining a local support group & subscribing to the Phoenix magazine made all the difference for me. (I found that most docs & even many WOCN nurses weren’t very helpful) There were a couple of older teens in my group & thru them I learned there were groups specifically for young ostomates. There is also a conference for ostomates held every other year that has been particularly helpful for the “youngsters” in our group. A lot of resources out there for us. Don’t be afraid … just do online searches, check out ostomy.org, even YouTube & reach out like you did here.

[Southpaw]

I had my ileo when I was 19, way back in the prehistoric days of 1966, 58 years ago. It was a life-saving procedure for me and I have been grateful for it ever since. As others have written, your life is about to get infinitely better than what it would have been without the surgery. Wishing you wonderfully successful surgery and a life beyond surgery will exceed your wildest expectations!

[Mysticobra]

Well.
It's January 3rd.
I hope all went well and better than expected.
Haven't had an update from you.
Hope you are doing well.
R.