Diagnosed at 13, now 23 and facing surgery.

[hhh87]

Hello all, I have been perusing for a while and have decided to post up. Feeling a little overwhelmed with info.

I was diagnosed at age 13 with Crohn's after a battery of tests, meds, and misdiagnoses. I was given 60mg of pred, blew up like a chipmunk just in time for 8th grade, and then started Remicade. Remicade helped tremendously and is what really allowed me to eventually be prednisone free.

Fast forward through high school and college with Remicade being my stronghold, with a few minor bouts managed with prednisone. After being in the workforce, scheduling and sitting for my infusions was growing old. My doctor recommended Humira because it was supposed to be more effective and was self administered.

I gave it a shot for about 6 months and eventually ended up back in my doctor's office this past February because I was in an increasing amount of pain daily. I was due for a colonoscopy anyway, when the results came back my doctor was surprised at the condition of my large intestine. He then prescribed Cimzia which he said was supposed to be even more effective than Humira. After giving Cimzia a chance, even with a booster dose, I was back in his office a couple weeks ago with pain again. Scheduled another colonoscopy and suggested that it may be up to surgery at this point.

I have met with the surgeon and I would ideally have laproscopic surgery to remove part of my large intestine and saving my undiseased (knock on wood) colon.

I am ready to do whatever it takes to feel good again, the pain and fatigue are really dragging me down. I have a lot of new exciting stuff happening right now, but I don't have the energy to do as much as I want. What I'm really looking for is guidance on whether or not this surgery is absolutely necessary. Should I consider going back to Remicade? Is healing possible? I know my doctor will push for surgery. He also doesn't believe in diet, but I've heard of too much success to think he's right in that. If surgery is the only way, then I'd just assume get it over with and move on. But I'm 23, and the idea of getting sliced up and stuff removed is kind of a load on my mind...

My research will continue... Thanks in advance everyone.

 

[mikeyarmo]

Wecome to the forum hhh97!

No experience with Crohn`s Disease is the same and surgery results in different outcomes for different people. Personally though, I had a small bowel resection (performed laparoscopically) just over 5 years ago and have had no major symptoms since (except for a few bad days each year). I am not currently on any medication either.

For me, there were still different medications and dosages that could be tried, but I was at the point when it felt like no progress was being made. The doctor admitted that he had no idea either what would happen with the other medications, but that it was worth a shot to see if they did help. At this point I was so tired and weak that I wanted a more definitive solution.

My colon is now totally healthy. I still have some stomach problems every so often, but I can not recall any episodes happening yet in 2011.

Let me know if you have any specific questions as I am happy to answer them!

 

[glum chump]

Hi HHH87:

Gee, you sure have some big decisions sitting on your shoulders. Surgery can be a significant decision for a lot of people.

Are you able to take the time to do the Remicade infusions? Remicade sometimes doesn't work once you've stopped taking it, but for some, it can work again. I think it's definitely worth giving Remicade a try again. While most doctor's do push for surgery, I hope your GI is like mine and will ultimately support your decision. My doctor had been trying to get me to have surgery for about five years and I'd continued to resist him. He didn't agree with my decisions, but he continued to support me and the choices I made around my healthcare.

I had my entire colon removed just over two months ago, and for me, it was the best decision I could have made. I've not worked in a few years and had to drop out of grad school because of my health. I failed all meds, and surgery was my only option.

You might want to check out the Stoma Subforum under "General IBD Discussion" and in the Treatment section, there's a Remicade subforum that all have really good information. You might want to post any questions you have around Remicade on there.

Welcome to the forum, and good luck with whatever you decide to do. Being as young as you are, I don't doubt that surgery must feel like a significant and often overwhelming decision to make.

Stay well,

Kismet

 

[reidyjo81]

Hi There,

Sorry to hear your going through a bad time. Not on here often but noticed your post and just wanted to send you a quick reply. I had surgery when I was 18 after suffering for a couple of years, it was honestly the best think I ever did !! A lot of people question if they actually need surgery but if you have faith in your GI and he feels it is the only option then it might be best to go with it. It could change your life. I recently had a total colectomy also, just back in November, this is something I wanted to avoid but again I didn't have much choice in the matter if I wanted to get better. It does take a while to recover from all of this, but your young and should make a fab recovery. Drop me an email if you want a chat about anything to do with upcoming surgery.
Wishing you well.
Jo

 

[hhh87]

Thanks so much everyone for the replies. After meeting with my GI again, I am feeling that surgery is really the best option at this point. My GI did not seem optimistic about anything including Remicade working, and honestly I agree with him. Like Mike said, I am ready for something I know will make me feel better.

Surgery, recovery time, temporary colostomy bags and whatnot will suck but won't last forever. My biggest concern, (maybe I should start a thread in the surgery forum...) is re-occurrence of Crohns in another section of my stomach. If so, then what? Perhaps I need to learn to deal with things as they come.

 

[littlefreebird]

if the crohn's was to appear in another section they would just remove it also. there are many people within the forum that have had multiple re-sections. i am getting my entire large intestine removed in 2 days and worry that the crohn's will appear in my small intestine and i won't have much left to remove! but honestly there's no point in worrying as noone can say for certain. might happen, might not. surgery definatley seems like the better option for you right now. people that have been off remicade for even a short time build an immunity to it, i'm doubtful that it would work again as well as it did before. it's so hard to be told you need surgery but hopefully it's a start to a pain/ care free life and i wish you all the best. i've also had crohn's for 10 years and my surgeon said i'm actually lucky to have only needed surgery now, so if you look at it that way, he's right.
good luck!! hannah.