Reversal operation and maintenance medication questions

[Mummyg]

Hi, My name is Gina and i am due for surgery in November to have my illiostomy reversed and my surgeon has discussed going onto maintenance medication.


I have had my bag (russell) for 3 months and it had taken a lot to get used to it but I am so glad I am having the operation to reverse it. Not looking forward to another op and the recovery but I want to get my life back to normal, whatever normal is living with crohns.

My question is that since my illiostomy I have not had any symptoms or pain so is it really necessary to go onto medication for crohns?

Would it not be better to not have any medication and if the pains come back then start?

My previous meds (salofalk) made me blow up and I put on 3 stone in weight, I am now back to my normal weight and feel great.

I hope I have a good period of remission but I know there is a chance it will come back.

:sign0085:

 

[Jennifer]

What medication/s were they talking about trying? Personally I'm in favor of maintenance medication because I want to stay in remission. The more inflammation you have the more scar tissue builds up leaving you open to possibly another surgery in the future. I know I don't want surgery again either. I've been in remission for 13 years now since my resection and have taken medication ever since (was Asacol and 6MP then just 6MP and now I only take Humira). Humira and Remicade are often called "the big guns" but they really do have great results in not only getting people into remission but also maintaining remission. Keep us posted on how you're doing and what you decide.

 

[Mummyg]

They have mentioned Aza, I know some people on it and they have seen great results but I am enjoying being medication free at the moment.

I feel so well at the moment that I don't know if maintenance meds is the best option, but I will be guided by my surgeon.

I see him on Wednesday this week so I will have more of an idea then.

I will keep you posted

 

[MsOJ]

Hello
I'm hoping to have a reversal soon, I'm currently not on any Crohns meds
When I spoke to my Gastro doc he said I would be put on antibiotics for 3months as this reduces reoccurrence of crohns where you're rejoined. Then unless they see any crohns the plan is to have a follow up colonoscopy to look for disease 6 months later and then possibly return to Aza or Humira.
Hope your op goes well
F

 

[Mummyg]

Well some good news, I had a call from my surgeon they are operating on Monday, a bit nervous but also excited.

They are putting me back on salofalk after the operation which I am glad about.

No symptoms yet so hopefully in remission.

Wish me luck

 

[MsOJ]

Good luck and let us know how it goes

 

[Terriernut]

Good luck!!!!

 

[Mummyg]

Well, Russell has gone!!

I had my operation last Monday and I am now at home recovering.

The surgeon managed to do it keyhole but I have 5 holes in my stomach as they couldn't push my stoma back in easily.

When I woke up I felt so relieved that I was bag free it felt really strange. Day 1 was ok, but day 2 after eating a few things I started to be sick.

The sickness lasted for 2 days and being sick with staples in your stomach is not nice, I carried on with fluids and tried food again a few days later. My stomach is still sore as I don't have my staples out until Wednesday this week but I have a nurse coming in to change my dressings.

My stoma hole is looking better than I thought it was going to, having seen other peoples pictures I expected a big hole but mine isn't too big, only 2cms by 1cm deep.

The big D: is ok too, got some cream just in case things get too bad.

Hope to well by Christmas and stay healthy.

 

[Terriernut]

Thank you for posting, I have been wondering how you were doing. Let's hope the big D settles down for you. Running to the loo after surgery isnt anyones idea of a good time! As for the vomiting, I know they want your bowels to work ASAP but sometimes I think the hospital staff push too fast! Take it easy and I hope recovery goes swiftly.