Possible surgery

[Rejhan15]

Hi i'm 18 years old and i possibly could be getting for my surgery...i was diagnosed with crohns back in october and probably had it for longer because by that time it was so bad it was severe according to my GI. Anyways i started humira and t didnt work so fast forward to now. I am in the middle of a huge flare up and have been in the hospital for a week and the catscan showed no improvement really. Im in depression pretty much i mean im 18 years old and with this disease im in constant pain, while my friends are out having fun partying doing normal 18 year old stuff i'm at home....in pain...fear i might have explosive diarrheahh wherever i go..scared of an even bigger flare up when i go out...the surgeon i talked to said she doesnt wanna operate on me b/c im so young..but i really feel if i get a small resecton surgery that i could achieve remission...i have hope which nowadays is rare for me...she said she didnt want to b/c im only 18 but wouldnt that be the best time...right now while its bad so i don't have to possibly deal with it later...maybe it could get me a normal life..hanging out with friends?...if i had the surgery i would go on imuran and remicade a couple months after is there anyway i could convince my surgeon?...And i started imuran while in the hospital and ive been having bad side effects from it..i hope my GI takes me off of it..nausea, headaches, rashes, still in pain, and many more things like explosive diarrheah, and a ton of grumbling and shaking in my stomach...i also have a thing on my anus i believe is an anal fissure or something....sorry for the long post....thank you for any help! this disease sucks...so so bad i've also been suffering from insomnia from stress depression or these drugs i have no clue....i'm also always red on my skin, face all of that idk if thats a side effect of anything i also have night sweats alot...

 

[leithcote]

Rejhan15 - sounds like you're having a pretty rotten time - hopefully they can get your flare-up under control. I quite often suffer with night-sweats when flaring, so can sympathise with you there. Unfortunately, the surgeons tend to wait until they feel there is a real need for surgery. Have you had a recent colonoscopy - or discussed your possible fissure/abscess with your Doctor/GI? It's often hard, but going back to your medical team and restating that things are not right - sometimes *several* times - is the only way to make them realise that something needs to be done - sooner, rather than later. They often want to "wait and see" - very frustrating indeed.

Hope you get the help and support you obviously need very soon. Tony

 

[Susan2]

Hi Rejhan :welcome:

One of the reasons that gastroenterologists and surgeons don't like operating on young people, unless it's absolutely necessary, is that Crohn's can recur, and often does, in the region where the resection has occurred. Then they might need to operate again and so on... It is different with Ulcerative Colitis where an operation can actually cure the disease.

They usually like to try as wide a range of medications as possible before they decide to operate. You say that you have been on humira and imuran but that neither has really helped. Have you talked to your gastroenterologist about other options?

 

[jlm]

I'm 25 and have had 3 resections. My second one when I was 12 or 13 was what put me into long term remission with thr help of remicade. Te last two years have been rough but what can you do.

Everyone is different and will make different decisions based on them. A couple of years ago I was having a pretty bad flare with partial blockages every few weeks. It would take days to recover from a blockage. My doctor gave me a standing prescription for prednisone which she let me take as I seen fit. It's the one drug I refused to take since I was a kid. But you have to work and pay bills and go to school. So the decision for me was to stay on Pred (remicade stopped working and humira wasn't putting me into remission) or have a surgery. I'd pick surgery everytime. Even with the crap that came afterwards.

Every side effect listed for prednisone effects me. Yay for gaining 70 pounds! Not sleeping. Anxiety. Mood swings. Sore joints.

I talked it through with my docs and we all agreed. Surgery was right for me. I agree that surgery and then a course of remicade might get you back on track. It really is a big decision to make. There's always bowel rest as well? 6 weeks on tpn might also be worth looking into.

 

[KiwiSharl]

Hi Rejhan,
I just wanted to say sorry to hear you are having a horrible time. Ive got Crohns, and I'm glad I didnt suffer when I was young like you...that's so unfair for you. my diagnosis came later than typical.
This will make you a stronger person, you obviously are strong, stronger than you probably think you are! Keep your chin up buddy. This too will pass... keep visualising yourself really well and doing something you love and painfree. I used to listen to music when I felt like crap, close my eyes and imagine myself running down the beach feeling full of life and vitality! You're so right this disease sucks!
Wishing you a speedy recovery and sending you a big hug all the way from NZ!