Update/Anyone else got Crohns in the Jejunum?!

[xSophiexx]

Bit of an update from me... So May12 after a Sigmoidoscopy, Colonoscopy and MRI was diagnosed wit CD in terminal ileum severe inflammation since then been on pred, pentasa, Aza which i became Pancytopenic on (1in300 chance go me) a hospital stay on IV steroids and now on Infliximab but started getting rashes from it so we shall see with that one.
Had a follow up Colonoscopy.. showed inflammation in ileum had dramatically basically gone other than a slight thickening however i am still as symptomatic as ever.. had another MRI which also showed only slight thickening in terminal ileum but i knew something wasn't right still.. symptoms at this point are days of no BM then days of what i call mass evacuation lol along with vomiting and ULQ pain.
So i had pill cam and today a follow up appt with GI. He told me the cam took a long time to get through small bowel, there were also a couple of ulcers. he believes i am presenting as though i have a stricture and the cam confirms this however they couldnt pinpoint the exact location. Next steps im having a barium x ray to try and locate exact point but regardless of if they can find it i will be having an operation. GI feels confident that i have a stricture in the Jejunum .. i did tell him i thought this about 6months ago but hey what do i know lol.
Im glad im getting somewhere finally as this has gone on for some time now but my qs ae...
Any experience of barium x rays?
Anyone with Crohns in the Jejunum ?
And small bowel resection.. what to really expect?! I am petrified!!

Thanks and hope you are all okay xx

 

[steve55]

I have it in the same spots. My suggestion would be do ask for a double balloon enteroscopy since they can widen your strictures with the balloon. I

 

[xSophiexx]

Okay and what are the benefits of that over resection other than they're not taking something out of course

surely we're not the only two on here?!

 

[steve55]

Its like you said, about saving intestine, which has the ability to heal. Cut too much and your in trouble, so I think its best to try a conservative approach first.

 

[xSophiexx]

Okay thank you

Cant really believe no one else replied

 

[nogutsnoglory]

I do have a stricture in my jejunum as well. Hopefully they can confirm it for you with the X-ray and its mainly inflammation so you can avoid surgery.

 

[Catherine]

Calling Maree. didn't Liam havee this type of x-ray.

 

[xSophiexx]

Thanks ngng but they said defosurgery either way as have no real meds options left other than humira and don't really want to take me off infliximab as had such a dramatic effect in TI.Also pill cam only showed few ulcers so they think its scarring. Im sick of it all right now.

Thank you Catherine.

 

[emmaaaargh]

I'm really late with this (sorry!) but I had a small bowel resection in 2009. I was 11 and kind of supremely uninterested, so I'm not really sure where in the small intestine it was, but it was a pretty easy surgery (and I think it was due to scar tissue). They did it laparascopically and to this day I've only got three tiny scars. I was up and moving as soon as they pulled me off the morphine (long story... someone messed up and left me on it for days) and released from hospital a few days after that, as soon as I'd used the toilet a few times and was obviously stable.

It's not THAT terrifying an experience, although it was for me at the time because it was my first ever surgery. I felt so much better afterwards, though, and it put me in remission. Hope you get on okay!

 

[Maree.]

Liam (aged 10) had a barium xray. In his case it didn't show anything. It took a long time but wasn't an unpleasant experience. There was no cleanout required. No significant pain.

He had to drink the Barium mix which was reasonably unoffensive, (particularly when compared to colonoscopy prep meds). It was then a long slow process as after each round of x-rays they'd send us off with a sheduled time to return. All up took about 6 hours most of which we spent reading in the hospital coffee shop.

 

[If*]

Hello, 1.the drink for the xrays is not too awful, drink it as fast as you can.
2.Yep, cd throughout.
3.Resection: everyones results differ. On a positive note once they heal, most feel amazingly well.
Walk as much as you can as soon as you can after the op. Hold a pillow to your stomach when you try to get up, lay down, laugh or cough.

Take care!

 

[xSophiexx]

Thank you Maree and If*

If* although everyone differs do you have any idea of average recovery times?!

 

[If*]

Hi Sophia, once you can go to the bathroom you usually get to go home average is 7 days. Then if lap is done the average is 6 weeks recovery, open 8 weeks. BUT it takes longer to heal all the way inside. When they say DO NOT LIFT anything they mean it. It is really important to stay mobile, walking as much as possible. it can help with gas pain that might happen. You will know it since it can be miserable. Some have loose bowels so best to be close to facilities until you adjust.
I know it can be scary, but really most feel like they have a life again and can eat finally.

Hang in there!
I will be wishing you all the very very best!!

 

[xSophiexx]

Thanks if* i really hope this can give me some relief so sick of feeling like this!! I take 1 step forward and what feels like 100 back. Really appreciate your input.

Emmaaaargh I must have missed your reply hun thank you I really just want to feel better if only for a little while. Glad it put you in remmission!!

Thanks everyone got the Barium Xray tomorrow and ended up having a flexi Sig camera today as was bleeding .. if it rains it poursss. Enough of the pity party hope youre all feeling good!! xx