Im just so fed up !

[CiaraG]

Hi All
I am really fed up of all this Crohns business. I am diagnosed now with it six years. I had a very bad abscess 10 months ago, I am now having seton stitches changed very 3 months for the next two years to try and heal three fistulas. Ten months later I still have an open wound ! I seen my consultant on tuesday to be told he wants to remove 1 foot of my small bowel. Not so sure of this op, so many conflicting stories on the net. I am on humira injections for the past two years, which control it 50% of the time. But Im not normal, I just want to do normal things !!! HAs anyone any advice on this operartion as I really dont know what to do ??

CiaraG

 

[ameslouise]

Hi Ciara - I don't have any advice, but I just wanted to wish you good luck. I hope you start to find some relief soon. Lots of people here have had resections and it has helped tremendously. If you keep poking around the boards you'll find lots of information.

Hang in there! -Amy

 

[stargazer]

What does your instinct tell you? If you jsut sit in quiet for five minutes and listen to your instinct what do you heard? Is it in your best interest? Have you weighed both options? I can't tell you what to do, especially since I have been so lucky not to need surgery but I have always been a strong believer in listening to that inner voice.

 

[Twinkle]

Hi,

I'm sorry, but I too can't advise on the surgery, as I've not had the procedure myself. I just wanted to wish you good luck and hope you feel better about things soon.

I know it's hard, but sometimes you just have to try to think about it rationally, would the op be best for you? Would it increase control of the condition from your current 50%? If so I'd say it's worth it.

Hope you find resolution soon.

 

[mario]

Hi Ciara
I had surgery 2 years ago and am feeling great. Nothing to be scared of honestly!!

 

[Nytefyre]

Hey Ciara!

I had a small bowel resection 3 years ago. Before the surgery, I was hardcore sick for many years. I was in and out of the hospital many, many times. I had a hard time with the surgery and recovery(massive internal bleeding, a second surgery, developed pneumonia, was in icu for 6 days, and still left out a bunch of stuff that went wrong), but since then the hardcore pain and other major symptoms are not as frequent. It didn't put me in 100% remission, but it helped me to not go to the doctor or hospital every month! Up until recently, that is, hahaha!

Don't let what I said about the problems I had during surgery and recovery get to you. Some people find that resection is just what's needed!

I only had something like 20 cm taken out. There are others on the boards who have had more taken out, and may have opinions about life after surgery.

Good luck with whatever you decide! Keep us updated.

 

[Grumbly-Guts]

I have had a number of resections and some have helped others have not. The best piece of advice is to completely understand both options, weigh them out and follow (pardon the pun) your guts. What do you feel is the best for you? Only you can answer that.

*hugs* I know this is hard.

GG

 

[CiaraG]

Thanks

Hi All

Thanks for your reply to me. I just really dont know what to do. I have been researching on the net and I think it is just confusing me more. Some say if you start having surgery they wont stop. But I want to have kids hopefully in the next two years so should I go ahead and have the surgery now, and please god my body will be able for pregnancy if it happens.

Hope everyone is having a good day today

CiaraG

 

[Grumbly-Guts]

Hi All

Some say if you start having surgery they wont stop. But I want to have kids hopefully in the next two years so should I go ahead and have the surgery now, and please god my body will be able for pregnancy if it happens.

CiaraG

Ciara,
I had 3 major surgeries (resection, then right hemicolectomy with ileostomy, then another resection and ileostomy reversal) the 1st 2 were 3 days apart and the 3rd was 2 and a bit mos. after that. I had a wonderful baby boy 2yrs after surgeries and then when he was 6mos old I had another surgery and 3 mos after that I had another surgery. Currently I cannot have children. Partly because my reproduction system has no idea what it's doing anymore lol, but mainly because of my current state of health. I have too much scar tissue and my pregnancy was pretty rough, and my health is barely capable of keeping me going nevermind an addiional life.
So again, everybody is different. I feel as though I will have more surgeries, but who knows and it doesn't necessarily mean everyone is like that. But, you should really weigh it all out with the docs and get second opinions if you feel you should, even set up a consult with a OBGYN to discuss what they think is better for your reproductive future.

Good luck hun,
GG

 

[CiaraG]

Hi GG

When you had your first resection, why did they operate again 3 days later. Did you have complications or did you know this was going to happen. Did you have to get a temporary stoma bag or anything ? Im not too familiar with all the surgery terms, as this part of crohns is all new to me, so apologies if you have already answered some of these questions.

Thanks
Ciara

 

[Grumbly-Guts]

Ciara,
When I had my 1st surgery I was only diagnosed that hospital admission. They found a 9ft narrowing (which resulted in a complete obstruction) and needed to operate. They used heparin (which is a common med used to stop clots from happening while you are immobilized in bed), and unfortunately the combination of the heparin thinning my blood and the resident who operated on me (guess I was his guinea pig) he forgot to suture a part of my bowel so I heammoraged (bled out) so much so in three days that my heart stopped. They rushed me in for my second surgery which resulted in them removing my entire right colon (as it had died due to lack of blood flow) and b/c of all the trauma they decided it was in my best interest to put a temporary ileostomy on my side for 3 months. Unfortunately due to med complications and another dose of heparin (as we did not know this was the cause of my 1st bleed) I developed more problems and infections (not from the surgery - just how my body refused to heal) they had to go back in around 2months later to reconnect me and remove my ileostomy.

I did not realise this is so new to you until I just read over your post again. I am so sorry that when it hit you it hit you hard (like me). It takes time to adjust and to understand everything that will happen and has already happened. I am still learning things about this horrible new neighbour I have! But, as long as you ALWAYS ask questions no matter what you will make it. Read EVERYTHING that MAY be related and ANYTHING you can get your hands on and definitly definitly contact a gyno to dicuss future fertility and pregnancy, they will tell you all possible outcomes. And again, you can only make a decision based on the info you have, the more info you have the better the decision and more informed decision you are able to make.

If you ever want to talk you can PM me, I am a stay at home mom as I am unable to work. I do some online courses (to keep my brain exercised lol) and chase around my son all day then homework with the daughter at night, but, I am usually online and logged in here.
Take care hun,
GG

p.s. if you don't have a heating pad another piece of advice-buy 2!! I swear by mine and always have an extra in the car or ready to go at a moments notice (I also have a car lighter adapter that has a proper plug end on the other end so I can plug any household plug into the car) this has saved me many times while in the car or out an about with an attack!