What to expect.

[Meshey]

Hello all,

I am new to this forum as I just found it today. I wish I would have found this forum a year ago.

Please call me TJ. I am 35 and I was diagnosed with Crohn's 12 years ago. At that time they really didn't know much about Crohn's and how to treat it, so basically I was just treated with meds that lessened the symptoms I was having. I then lost my job and insurance so I was unable to afford to be treated for it any longer. I did my best to control it with proper diet and exercise. It was like a 10 year rollercoaster ride. I have ruined vacations due to flare ups while on vacation. So in January of 2011 I decided that I needed to get healthy for my kids. My doctor said that after my first scope she thought I was going for surgery as my whole colon was so inflammed that I was barely passing anything at all. She decided to put me on Humira which has helped over the last 1 1/2 years but I had a flare up in the beginning of August that was worse than any flare I have ever had and pain in places that never hurt before. Since then I haven't been able to get back to where I was before the flare up. I've been through a series of tests since then and the doctor just informed me yesterday that I need to go for a scope on Friday so she can tell the surgeons what exactly needs to be removed. I just don't know what to expect at this point and am a little scared/worried about it. I've never had any kind of surgery before.

I'm just wondering how long of a recovery should I expect? At this point, I'm not even sure what she wants to remove as my Crohn's is so wide spread that it could be anything from my colon to some of my small intestines.

 

[Angrybird]

Hello TJ and welcome to the forum

I am sorry to hear that you are not doing so well at the moment and now facing surgery. It could be that the inflammation over time has built up scar tissue there by causing a narrowing - stricture - and the upcoming scope may confirm this an if so where it is qns how wide spread so they can then confirm the amount that needs to be removed. Has your doc said yet whether it would be done via 'open' or key hole surgery. My understanding is usually the docs try to do this via key hole there by lessening the amount of scar tissue left behind from the incisions and recovery can be quicker/better as well. I had this type of surgery last year and it went a lot smoother than I thought it would, I was in the hospital 5 days and was back to work after 6 weeks. I found the discomfort afterwards much more tolerable than the pain from the stricture leading up to the op. If you would like further info regarding this then please do check out our surgery sub forum under our treatment section: http://www.crohnsforum.com/forumdisplay.php?f=71.

Will be keeping fingers crossed you can be feeling better soon, please keep us updated on how you are doing.

AB
xx

 

[Meshey]

Thanks angrybird.

She really hasn't said much about right now. I should know more on Friday. I'm just freaking out a little about it. I was in for a scope in January and she said I was moving in the right direction then, but very slowly. I have been very uncomfortable and the pain has been bearable for the most part. I wake up every morning feeling terrible and I have a personal relationship with my toilet if you know what I mean. Sometimes I wonder that I have been living with this pain for so long, that my threshold for it is pretty high. I'm just worried at this point. I know someone that lost 2 ft of his small intestine and is still having problems with it. So, I am worried that this isn't going to help in the end.

 

[Smoke8045]

I also have had colon issues, like the kind where they cut half of it out about 6 months ago. That was something that I wish that I could forget. I have had crohns about as long as you have, so I was there it like with you when the docs really didnt get it like they do now. I wish I could tell you that surgery isnt something to worry about, but, I,m not going to.
I wish you all the luck in the world that all go well.

 

[David]

Hi Meshey and welcome

I don't have any specific advice for you other than to connect with others in the surgery forum. So many here end up saying they wish they had surgery sooner

We're here for you!