Meeting consultant on Monday - question

[nitty]

Hi Folks!

On Monday I'm meeting my consultant for my first visit since diagnosis 6 months ago.

I'm just wondering what my expectations should be with regard to my level of recovery.

Background: After increasing rectal bleeding I was given a provisional diagnosis of UC which was then changed to CD due to the distribution of inflammation seen on colonoscopy. It has responded well to MesavantXL (after trying other 5-ASAs), but when I stop the additional optional suppositories a tiny amount of bleeding eventually comes back, along with more frequent and urgent toilet trips (about 3 times a day), with stools that are rather mushy (sorry!). My previous habits were BOs only every 2-3 days and 'poos with edges'!!!:ybiggrin:

When I read other people's stories I realise that I am very lucky to be in the state of health that I am, but I guess that having the symptoms I have means that there is active disease there, even if it is mild.

I just want to know whether I should ever expect to get back to my previous norm, or whether this is as good as can be expected. Should I be pushing for further types of treatment that could make that final step to remission (whatever that is, really), or should I be happy if the consultant says to continue as I am?

Any thoughts would be greatly appreciated.

Thanks in advance.

 

[David]

I feel the goal should always be remission. Especially since, if you're not in remission, that means that you at least have low levels of inflammation which, over time, can lead to more active and severe disease. For example, chronic inflammation can lead to scarring which can lead to narrowing of your bowel which can lead to a whole host of issues.

I feel the goal should be remission where there is a lack of inflammation and where intestinal mucosa healing is 100%. If a certain treatment regimen doesn't get you there, try something else. There is not "good enough" with Crohn's Disease because good enough is not and usually leads to issues down the line.

 

[nitty]

Thanks David,

That's what I was hoping to hear, as I wasn't sure if I was being too demanding in my expectations. It will help me to be more assertive if the Dr tries to say my condition is good enough (although I have no reason for expecting him to have that response, I just want to be prepared - you hear about some terrible consultations that some patients have had).
I showed your reply to my husband, who works in a different field of medicine and he agreed that if taking a higher level of medication achieves a better result with the consequence of fewer long-term complications, then it is worth doing, even if that means a whack of steroids, which I had been hoping to avoid.
I just don't want to be told that if the suppositories made it better then I have to stay on them long-term. I can put up with them on an 'as required' basis, but not life-long!

 

[Cross-stitch gal]

I agree with David, remission is something that we all strive for. Some of us can stay there for quite awhile. While others struggle a bit. But, no matter where we are in the disease we do our best to get there. Glad to hear that you've got someone to help, listen and work with you. Take care.