Post surgery issues!!!

[suziesarg]

Hi all. My husband has been thrown into the world of Crohn's. 4 months ago he was fit well and active. It came on overnight literally. In 10 weeks he was in constant pain and lost 4 stone. It lead to an emergency bowel resection. He lost 50 cms of small bowel that was dead and 50cms of Crohn's small bowel that had been forming 4 fistula. He was left with a stoma.
He was in hospital for 2 weeks post surgery. His pain lvls were under control within a week. His problem is he's just not getting any better within himself. He is very week. He finds even the smallest tasks impossible. He is drinking and eating well. I would have expected to see a tiny improvement but he seams to be going backwards. Has anyone else had a similar experience. Thanks

 

[suziesarg]

Also he feels his legs are so weak that they may give way

 

[Kero]

He has been through quite a lot! I am sorry to hear he isn't bouncing back as fast as you guys would like, but sometimes it takes time. Everyone is different. Have you mentioned your concerns to his GI? How long ago was his surgery?

 

[suziesarg]

We have only seen gi once pre surgery. He is due to see her on 23rd. I have tried to push this appointment forward but they have refused. We are not unrealistic and he has been through major surgery and was very ill. His surgery was 6 weeks 6 days. The issue is he is alot worse niw than he was 3 or 4 weeks after surgery. Hes eating well but is still slightly losing weight. Hes in no pain. The simplest of tasks now are very difficult for him. Im talking about going upstairs to the tiolet. 2 weeks ago he was doing very sedatily stroll around the block. Im just getting worried they are missing something.

 

[Kero]

I agree, wondering if they are missing something. I would personally go to my family doc so bloodwork and such can be done in case he has really low levels of something. Sending many ((((hugs)))) hope you have answers soon

 

[suziesarg]

Thanks took him to GP thursday. They ran bloods potassium came back very high but said may be lab error and we need to repeat it monday. Thanks for your good wishes. We are just feeling abit helpless now. Keep just getting referred back to surgeons who say it's all good it's now medically and no one seams to want to claim responsibility.

 

[Grumbletum]

Hi Suzie. Sorry to hear about what you are both going through. I found when I was first ill that docs are very focussed on getting you on the right physical treatment but don't really take care of the mental.
I woke up one morning too feeling awful and bam! That was me on this terrible rollercoaster for the next two years.
It 's such a lot to get your head round. One minute you're a healthy human, next you have a chronic disease which has taken over your body and your life and it 's never really going to go away. I suspect, like a lot of us, he is trying to come to terms with it all. Plus also being at a low physical ebb, it's a double whammy.
He's lucky to have and really needs the support you're giving him but you need some too.
That's where we come in but some face time can be good too. Has he been assigned an IBD nurse? Mine was great. He just really got it, and I could phone or email him any time I needed to.