Surgery Question / My Story

[H20 86]

Hi, I'm a Male whos 21 years of age, who also looks at alot younger then 21. I found out i had Crohns Disease about 2 years ago. I'm sure i had it sooner (maybe when i was 12 or 13 years old) but wasnt discovered unstill 2 years ago. I went from 5'4, 75 lbs to 5'7, to 135 lbs in 2 years. I'm hoping i still grow since my bone age test showed my bone age is 15. I'm not lactose intolerant ,so i drink alot of milk with Weight Gainer powder to mantain weight and Gain weight.

My doctors say "its a Mild" case, however it looks like im going to need Surgery to fix this. Its doesnt really bother me but i can still feel it on my right side. The surgery is to fix the blockage and removing only the diseased section around my small intestine area.

I never had Surgery in my life and i really dont know anyone with this Disease. So maybe you guys can help and answer some questions for me:

How was the surgery?

Do they cut your whole stomach open?

How long was the recovery time?

How kind of Meds are you on now?

Can you eat foods you couldn't before?

How are you feeling now ?

Thank you all soo much !!!

 

[BWS1982]

Welcome, cannot help with the surgery aspect, but I'd have to comment that if surgery is in the cards for the docs, you DON'T have "mild" Crohns.....but that's just my view. Mild Crohns is usually controllable with something like 5ASA (asacol etc...) and nothing else, let alone surgery.

 

[H20 86]

when i've been on Meds ( Pentasa, Flg and 6 moths of Pred) for about 2 years, and i have pretty bad blockage in my small int. Meds helped alot but now im at a stand still.

I'm kinda happy im having surgery.... i've been battling this for along time.

 

[Kev]

Well, it's possible that there is very deep issues that have to be addressed by the operation... in a very short length of ileum. I guess it could be classed as mild in the extent of the operation required. Just a wild assed guess on my part, tho..

I had an old fashioned resection of the large colon.. they may be able to do yours laproscopically. In me, my incision starts at the belly button and goes to the groin. Here's the good news (tho every case is different, it is possible for complications to arise.. esp post op infections if your taking immune suppressors - talk that part over with your doc).. in my case, my op was at 7am and I was walking around with the aid of 2 nurses (I'm a really big fellow 6' 3")
by noon. I walked solo that evening, dragging my morphine pump N catheter bag with me.. tho a nurse kept an eye on me.. then I did anothe before bed. I continued to double the lenght N frequency of my walks every day. By morning of the 2nd full day after the op, they took away my morphine. Next morning out came the catheter.. wish they done catheter 1st, morphine pump 2nd, but that is the practice i've heard.. Bowels moved that day, I started eating the next, and I was out of the hospital on the 5th full day after the operation. For me it was a walk in the park. Based on my case, no one should fear having it done.

I currently take 4g of 5ASA a day, and 4.5mg of LDN at bedtime.

I don't stray off the strict diet I was put on. Esp in crohns disease, surgery is only able to remove the area damaged; NOT stop the disease progressing. If you want the best chance of avoiding further operations, watch your diet, OK?

Just a suggestion.. there is no overwhelming evidence diet will control IBD, but everyone knows the healthier the diet, the better our overall health should be.
Figure eating just anything is like playing russian roulette with your GI tract.

 

[jed]

How was the surgery?
life changing - for the better! plus i was apparently really funny when i was in the recovery room! i also freaked my mum and wife out cause the nurse let me use their phone at 2am in the morning, i just wanted to say hi

Do they cut your whole stomach open?
my surgery was for removal of almost my whole large intestine. i have a scar from my rib cage to my pelvic bone now, and honestly, everyone thinks it looks pretty awesome

How long was the recovery time?
i was out of hospital in 6 days, off work for a further 3 weeks, then took it really easy for about 2-3 months after that.

How kind of Meds are you on now?
my meds now are for something slightly differnt now, so far i havent had a bad enough flair-up to have to go back to crohns meds yet.

Can you eat foods you couldn't before?
i can eat again, thats the best part

How are you feeling now ?
kinda tired, its about 10am and we have no t-bags at work. gonna have to go to a deli to get my morning cup of pick me up
but in all honesty, i feel so much better, and if if gets to the point where you need surgery then i should say your gonna feel a whole lot better afterwards as well.

best wishes!

 

[H20 86]

Jed u sound alot like myself, someone whos like to laugh and crack jokes.

Thanks alot and im sooo long forward to my surgery... i really want to be some what Normal again.

 

[jed]

you have to laugh dont you keeps you sane.

in the end, i was looking forward to my surgery as well, i just wanted some relief. I know its not the cure, and i may have to go back for more, but so be it...

at least for a while i'm feeling well in my stomach again.

 

[H20 86]

Yea i know , cant wait for that same relief. To be honest, i've been soo happy since i've been d'x with Crohns. I cried like a little girl at first but thats only becuase that was tears of relief and finally getting a answer. Me and my family had no idea what was wrong with me for years. Finally i went to see new doctors ( reallly expensive doctors but didnt matter cuz of my health) they found out i might've have crohns. After a few tests it was comfirmed. I was 70lbs at the age of 18 when i saw them, now im 135lbs and grew 2 inchs. Now i'm soo happy and i'm always positive. Since i've been throught all this i've become mentally stronger and feel like nothing can bother me. Can't wait to feel even better after surgery.

I'm soo glad i found this forum, i really dont feel like I'm the only one with Crohns anymore.

 

[jed]

you're really not alone with this.

the information and love on this forum amazes me, i wish i had found it sooner myself!

 

[elp888]

I just had resection surgery 2 weeks ago (for the second time, 1st time in '95 - after that 12 yrs of remission), so def worth it). they only removed about 2.5 inches of my small intestine. i was in hospital for 2 weeks, which is long, but it took about 8 days for my guts to start working again.... very uncomfortable!
the scar snakes around my bellybutton, about 4 inches. i'm on 125 mg azathioprine a day.i was on prednison before the operation, but was off the pred at the time of the operation, this is better for the healing process.
as for food, i've never been on a special diet, and now after the operation i've been eating everyhting again, though in smaller portions.

good luck with the surgery!
e.

 

[Guest]

Yea i know , cant wait for that same relief. To be honest, i've been soo happy since i've been d'x with Crohns. I cried like a little girl at first but thats only becuase that was tears of relief and finally getting a answer. Me and my family had no idea what was wrong with me for years. Finally i went to see new doctors ( reallly expensive doctors but didnt matter cuz of my health) they found out i might've have crohns. After a few tests it was comfirmed. I was 70lbs at the age of 18 when i saw them, now im 135lbs and grew 2 inchs. Now i'm soo happy and i'm always positive. Since i've been throught all this i've become mentally stronger and feel like nothing can bother me. Can't wait to feel even better after surgery.

I'm soo glad i found this forum, i really dont feel like I'm the only one with Crohns anymore.

hiya H20, and welcome to the forum

i empathise with everything you've said here - it makes such a difference to be given a diagnosis after suffering for a long time, and also finding others who have the same condition. you may well find others, while in hospital, who have Crohns, and that is another positive step that i discovered - actually sitting down and discussing symptoms with someone who's going through the same.

my surgery was not typical as in the after effects, so i won't go into that - but i would agree on what's been said already. i had a laparotomy, have a scar from my pubic bone to mid-rib area (actually have had several, and they use the same scar every time). pain relief immediately post-surgery is excellent, normally they give morphine, mine was through a PCAS system, where you are in control, you press a button attached to your hand, and a regulated shot is pumped through an epidural. its quite possible that your Crohns was classed as mild because maybe you only have it in one small area - and i'm wondering if, if that is so, you may be a candidate for laparoscopy surgery.

regarding recovery, they usually get you out of bed around a day later, to sit in a chair, maybe a tiny walk around the bed, and day by day you will get your strength and stamina back, & be walking unaided round the ward and to the toilet etc.. i think returning home is around 8-10 days here in the UK, providing everything has been straightforward.

good luck with it, and let us know how you get on. i'm sure you will feel amazing once that blockage has been removed

 

[crohnsmom]

surgery

Welcome to the forum! It is almost exactly 1 year ago that my son, 19 at the time had resection surgery for Crohns. They removed about 6 to 8 centimeters of small intestine, a large abcess, and his appendix. His recuperation time was amazing-out of the hospital in 5 days, eating 48 hours later, and with the exception of lifting heavy objects back to normal for the first time in a year within 1 week!
His scar is so small y that it is difficult to find! He did not have laparoscope surgery, however his surgeon, a leading man from Harvard in Crohns, has a way of doing this leaving a very small scar-truly amazing.
My son is on no meds now, and has been feeling great this past year. Follow up colonoscopy has showed he is still clear of inflammation. Considering prior to the surgery he spent 6 months not being able to eat mch solid food at all, his diet returned almost to normal with avoidance of things like popcorn and a lot of fiber and roughage. He always had a prioblem with lactose so that has not changed.
He was down to 140 before the surger, and since then has bee holding at a healthy 170 to 175 pounds.
Hope this allays some of your concerns. No one likes the idea of surgery, but this truly gave my son his life back-how long he holds in remission is still a mystery-doctor is hoping for a minimum of three years-of course I hope it is longer.
Wishing you the best,
Sincerely,
Ramona

 

[Keara07]

Hello H2O and welcome ...

Still recovering from surgery 10 weeks past but yes, agree with most of what is said and that while it is not a cure by any means, it certainly has helped most of the symptoms go away. Still watching carefully what I eat ... had a small flare just one week ago so keeping a food diary to try to figure it all out ... plus still on prednisone (one week left only!)...HIGHLY recommend do not go on it or be on it anywhere near surgey - it prolongs healing and masks stuff.

But overall, doing well. Scar is the 10 inch kind but no matter, internal sticthes still pop out above my navel (poke - but they dissolve in 3-6 months post op I was told - those are the stomach wall ones)...intestine areas staples seem ok but can't lift anything or drive yet or strain the area. AGain, docs put it on the pred, but I had to taper after being on for 4 months prior the surgery which was an emergency one, not scheduled.

maintenance med is pentasa and while no one knows relaly how/if/why it works ... it seems to be ok. 3G daily.

Best of luck, hope you feel better soon!

 

[H20 86]

hiya H20, and welcome to the forum

i empathise with everything you've said here - it makes such a difference to be given a diagnosis after suffering for a long time, and also finding others who have the same condition. you may well find others, while in hospital, who have Crohns, and that is another positive step that i discovered - actually sitting down and discussing symptoms with someone who's going through the same.

my surgery was not typical as in the after effects, so i won't go into that - but i would agree on what's been said already. i had a laparotomy, have a scar from my pubic bone to mid-rib area (actually have had several, and they use the same scar every time). pain relief immediately post-surgery is excellent, normally they give morphine, mine was through a PCAS system, where you are in control, you press a button attached to your hand, and a regulated shot is pumped through an epidural. its quite possible that your Crohns was classed as mild because maybe you only have it in one small area - and i'm wondering if, if that is so, you may be a candidate for laparoscopy surgery.

regarding recovery, they usually get you out of bed around a day later, to sit in a chair, maybe a tiny walk around the bed, and day by day you will get your strength and stamina back, & be walking unaided round the ward and to the toilet etc.. i think returning home is around 8-10 days here in the UK, providing everything has been straightforward.

good luck with it, and let us know how you get on. i'm sure you will feel amazing once that blockage has been removed

Yea, it's called mild because I have it in one small area.


Thanks everyone ....you guys are GGRRREEEAATTTT !!!!!!! June 26th is my surgery date.

 

[Kev]

Well, I 'believe' I was told, when asked pre-surgery about what kind of scars I'd end up with that a lot of it depended on the age of a patient. Young people with really 'elastic' derma, etc., can be operated on the old way yet still end up with a minimal scar/incision.