Looking for support and experiences with surgery

[SS410]

Hi

My husband has Crohn's and I know that this is very painful for him. It has been difficult for me emotionally. I feel like I'm not helping or doing enough.
The possibility of surgery is closing in on him. We go back to the doc on the 24th to see the results of the CAT scan and blood tests. I'm very nervous for him.
Knowing that Crohn's is a different (but similar) experience for everyone, I would like to hear your stories of what lead to your surgery, how your surgery went, what they found, how was your recovery and if you are in remission.

Thanks for any info you can give. :ghug:

Jacque

 

[Jennifer]

I'm about to head to bed and can elaborate later but basically medications weren't working for me anymore (diagnosed with Crohn's when I was about 9) after over a year of being on high doses of awful meds like Prednisone so they took out 8 inches of my small intestine (ileum portion). They also took out my appendix while they were in there (a common practice these days). My surgery went fine but my surgical site got infected so my recovery time was longer than expected. Recovery is painful but you do get pain meds that help a lot. Most of my time after surgery was spent sleeping. Ever since my surgery I've been in remission. My surgery was over 10 years ago. Staying on maintenance drugs is key to staying in remission along with regular visits with your GI and having scopes done even if you aren't having chronic symptoms.

If you have any other questions or if I wasn't clear, I'll be back on tomorrow to elaborate further if you like.

I'm sorry you're both going through this but welcome to the forum!

 

[Jennjenn]

Hi,

Just being there for your husband and being suppotive probably means more to him than you can even imagine.
I have had surgeries but everyone is different. Even than though I had complications, it was beneficial for me to have the surgery. It has been four years since my last surgery. Yes, I still have difficulties but my terminal ileum needed two feet removed and they also took part of my large intestine. It was a necessary step that needed to be taken because there was no reversing the stricturing.
Keep in mind though that some people have no complications.

 

[SS410]

Thank you for your responses. I guess not many people wanna share. I'll look at other threads to find some info.

 

[Sue-2009]

I too tried every medication...that was available..and it failed. So, I had a total collectomy..I was so amazed at how much better I felt. I had an ostomy for 3 months and then they created a j pouch...You don't realize how sick you are, until they remove that "bad" spot. It was a struggle after that for my body to get used to it..But, he will not believe how good he feels after the surgery. He is luck to have a spouse who is so supportive. Take care of yourself and look around at other positive results. Peace, Sue

 

[Guest]

hi Jacque... do you know what surgery he might be facing? there's such a difference between a simple small resection, for example, and a total colectomy, and/or formation of a stoma..

i've had 6 abdo ops, one wasn't Crohn's connected - ovary/cyst removal - but the others were.. 2 of them were due to post-op complications... recovery time i'd say around 3 weeks before being able to walk straight, but the acute post-op pain should subside in a matter of days.... fluids and solids are usually reintroduced a couple of days after surgery if all is well, and signs are ok, like he's passing gas.. and these days they get patients up on their feet very quickly too..

it took me around 3 months after each one to really feel 'normal' again, where i could bend, lie, climb in and out of the bath, without any 'ouch' moments..

the one thing i would say is that, as scary as the prospect of surgery is, if the surgeons are offering him a chance to get rid of the thing that is making him ill and pulling him down, then i think it's a chance worth grabbing - his quality of life afterwards could be so much better.