16 years old and surgery is my last option

[Glamcow]

I'm Hannah and as you can see from the title my last option is to remove the area inflamed in my bowel...if this last drug im trying called infliximab doesn't work. I'm one of those lucky people where no medicine what so ever helps to stop my Crohns from going crazy )) I've been told that infliximab is like humira and that did absolutely nothing to me but make my leg itch and puff out so I'm pretty sure it's not going to work.
I'm honestly so worried because what if surgery doesn't help at all and then what am I going to do? I've tried every single drug I can try and plus I'm too young to try the trial drugs. Life is gr8 with Crohns. I was also wondering for whoever has had surgery, how many years of remission have you been in until it came back? Or if surgery was your last option and it didn't work what have you done to keep it under control to a certain extent?

(Why is the face on the surgery icon smiling ;-; ?)

 

[Catherine]

Welcome to the forum.

Paging DustyKat for you. Both of her kids have had surgery and are doing well.

You may what to check out of Parents Forum. There are current two threads about teenagers about your age who have had recent surgery.

 

[DJW]

Hi Hannah and welcome.

I was in the same boat as you are many years ago. Nothing worked. I had numerous surgeries but eventually it did give me a 20 year remission.

Sending you my support. I hope you have the same success I did.

 

[Liquid Bacon]

Surgery isn't "all bad". My GI used to tell me that "once you cut, you're going back in there every 3 years" but I don't think that holds true anymore. As you'll see on these forums, lots of people have had one surgery in decades.

Another alternative you may not have tried is tube feeding (not sure what the proper name is) with Boost, Ensure, etc. Or go half-way and replace half of your food with the Boost to calm things down a bit. I did the tube feeding for over a year to avoid surgery and make it to age 18, where I could then try experimental drugs.

 

[Glamcow]

Welcome to the forum.

Paging DustyKat for you. Both of her kids have had surgery and are doing well.

You may what to check out of Parents Forum. There are current two threads about teenagers about your age who have had recent surgery.

Thank you and I'll go check that out when I can.

 

[Glamcow]

Hi Hannah and welcome.

I was in the same boat as you are many years ago. Nothing worked. I had numerous surgeries but eventually it did give me a 20 year remission.

Sending you my support. I hope you have the same success I did.

I'm glad it worked out for you in the end ! And thank you.

 

[Glamcow]

Surgery isn't "all bad". My GI used to tell me that "once you cut, you're going back in there every 3 years" but I don't think that holds true anymore. As you'll see on these forums, lots of people have had one surgery in decades.

Another alternative you may not have tried is tube feeding (not sure what the proper name is) with Boost, Ensure, etc. Or go half-way and replace half of your food with the Boost to calm things down a bit. I did the tube feeding for over a year to avoid surgery and make it to age 18, where I could then try experimental drugs.

I talked to my doctor at my appointment today about trying a full liquid diet with a dietary supplement called fortisip which is pretty much tube feeding because there's no way I could drink that stuff while tasting it heh ^^; he said that I should try it for 3 weeks and if it helps then no surgery !

 

[tzvia]

Hannah, I'm in the same boat as you, although I'm a little older. No medicines have really worked for me yet, and if we can't find one that works, I will probably need surgery to take out a piece of my intestine that has formed a stricture. From what I've read, these surgeries are very common, and very effective. Often people with Crohns will experience great relief from their symptoms after surgery. After surgery, many people can stay in remission for a long time, especially if they eat the right food, excersize, and take good care of themselves. Another thing that you can try along with the medicines are certain diets. The SCD diet had helped many people with Crohns and maybe that is also something that you can try before surgery. Good luck!

 

[tzvia]

Oh, I just saw what you write about the liquid diet. Good luck with it! Let us know what happens

 

[Liquid Bacon]

I talked to my doctor at my appointment today about trying a full liquid diet with a dietary supplement called fortisip which is pretty much tube feeding because there's no way I could drink that stuff while tasting it heh ^^; he said that I should try it for 3 weeks and if it helps then no surgery !

I couldn't drink them either. I think I'd still gag from the smell of opening one of those Boost cans today, 10 years later! I choked down one or two during the day and fed the rest through a feeding tube with a machine at night.

 

[Muppetgirl]

Hi Hannah, I love your username...it made me smile

I didn't go through surgery until my 20's, so I was older than you. But I did find it hard when most of my friends were 'healthy' and didn't understand. Overtime though I met others in similar situations. I think good support is key, that way whatever happens to you be it surgery or more drug treatments you won't be alone.

My situation is different from yours as I don't have crohns but endometriosis lesions of the bowel, but for what it's worth, resection surgery was life changing for me in allowing me to regain some quality of life.

Best of luck whatever happens.

 

[Liquid Bacon]

Muppetgirl, besides doing the surgeries, have you found anything to help with your entrometriosis? My sister has the same issues, including the lesions of her bowels. It seems there are no treatments out there short of taking tons of powerful, super toxic painkillers every day. I wish I could help her somehow.

 

[Muppetgirl]

Muppetgirl, besides doing the surgeries, have you found anything to help with your entrometriosis? My sister has the same issues, including the lesions of her bowels. It seems there are no treatments out there short of taking tons of powerful, super toxic painkillers every day. I wish I could help her somehow.

Sorry to hear about your sister. It's really difficult as it is so variable, not just in stages, but in the sites, pain, dysfunction etc. If she has advanced disease which it sounds like she does, then tbh I think surgery is the best option. But only with a specialist. A regular gyn is not enough. It needs to be someone with the advanced surgical skills to remove ALL lesions & who has a colo-rectal surgeon on his team. Sorry if you know all this. I don't think medical therapy is that advanced, though aromatase inhibitors are showing potential. They aren't licensed for it yet, so it may be difficult to find someone willing to prescribe. I hope she finds something that helps .

 

[Justanothercp]

Glamcow,
I had surgery to remove small intestine due to a stricture about 14 years ago (age27 or so) I still take a lot of Meds and have to watch my diet, but I work full time, I'm happily married, exercise and live a full happy life. I have partial obstructions a couple times a year, only one required a hospital stay. I know I will have to have surgery again someday.... My advice is don't wait to long, if you are sick, miserable and in pain and nothing seems to help, you probably just have a diseased segment that needs removal.
Educate yourself! Personally I think my diet plays a huge role, but I've been working on it for a long time and am still learning.