Told: Be prepared for surgery

I spoke to my consultant today. She told me that I should be prepared for surgery! I have been on 100 mg Azathioprine since my bad reaction to Asachol. Also my prednisone has been tapered off. My symptoms are reduced enough for me to go back to work and to function with some normality. I still have to rush to the toilet too often for my liking. Mucus, blood and cramps are still occasional companions. Normal looking stools sometimes occur. Overall my improvement is not good enough! Since Christmas I have noticed a gradual decline in my condition. Today I have been prescribed an increase to 150 mg Azathioprine and now I am to have the pleasure of applying pessaries! My next colonoscopy is on 11th. February.

I do not feel the non-surgical approach has been given enough time and not enough treatments tried. What else is out there in terms of approved UK treatments? Are there promising clinical trials coming up or ongoing? For instance I have heard of the benefits of whip worm, though not necessarily in my case of severe ulcerative pancolitis.

Your comments on my general condition or my prospects would be welcome.

Thanks Princessa.

I should put these points in my profile. I have been using probiotics, Aloe Vera, peppermint oil, a low GI diet, high roughage and a protein supplement since DX. I have no idea how much these have helped. I am glad to be getting up the gym for hard workouts and running too. This is between toilet visits. My weight has remained stable but my energies have lowered. I sleep like Rip Van Winkle nowadays.

Any knowledge to share on surgery?

lol i always jump in here!
surgery is not that bad, i promise, and it beats trying things and praying they will work only to have them fail again.
You can always meet with the surgeon and see what they have to say, that doesnt mean you have to do it, just get lots of info.
noone ever wants to HAVE to have surgery, but in some cases it can really be wonderful in the long run

I think your GI is wise to inform you of the worse case scenario (surgery) in the event it has to happen.  I had surgery after a constant 2 year flare and have never regretted it.  However, I had the disease longer than you and got sick and tired of being sick.  But many a UC patient has to have surgery only having been diagnosed a short time.  Sometimes meds fail patients.

Sue

Leaking or incontinence is mostly limited to recovery of surgery. I do not have have either problem but did in my first couple month's post surgery. The problem with Crohn's that you describe is not that remaining tissue turns to Crohn's but that the original diagnosis for UC was incorrect. UC does not turn to Crohn's, Crohn's was always there but never identified. Differentiating between the two diseases is very difficult. Life is not perfect after surgery but life with UC was worse, for me, than life with a jpouch. I hope you are able to get your UC under control and not have to make this decision but I do think all UC patients should research and understand surgery since about 20-30% of UC patients will have to resort to it.

Sue

Princesa, you asked me what pro biotic I was on. I have only ever used off the shelf supermarket pro biotics and live plain yogurt, such as Danone. My GP, (General Practitioner) , said that the NHS does not prescribe anything any better than this. I have considered pro biotics as a possible remedy because my colitis followed a severe bladder infection, cystitis, and back-to-back antibiotics courses.

Is there a more potent or fit for purpose probiotic?

I have also read about antiviral treatments that are supposed to flush embedded viruses out from within our cells so that our immune systems can destroy them rather than attacking our good cells. You have all looked at the Ray Lala site I guess. What do you think of his $200 course. I figure that if it was that good everybody would be doing it. http://www.resolvecolitis.com/Welcome.html

Hi,


Like you I live in the UK.
My consultant also talks to me about surgery as though it's inevitable. Last time she said some people in a similar position to myself (UC pancolitis - 8+ movements a day.) would be banging her door down begging for surgery. Fair enough, but I take it all with a pinch of salt after I read the NICE guidelines saying that "surgery should not be seen as a last resort"

I have yet to be convinced post surgery would be significantly better than pre...

Suki2008,

I am also in the UK and facing surgery too. What are your symptoms like at the moment?

I was told to prepare for surgery almost a year and a half ago, since then I've fought tooth and nail to keep my colon where it is, although it might be a lost cause - I probably will have to have surgery one day.

Probably, sooner the better...

G

Suki2008 said...
Princesa, you asked me what pro biotic I was on. I have only ever used off the shelf supermarket pro biotics and live plain yogurt, such as Danone. My GP, (General Practitioner) , said that the NHS does not prescribe anything any better than this. I have considered pro biotics as a possible remedy because my colitis followed a severe bladder infection, cystitis, and back-to-back antibiotics courses.

Is there a more potent or fit for purpose probiotic?

In my opinion, yes. Cheaper supermarket brands and yogurts are notorious for making unsubstantiated claims. When tested, they often don't have near the viable organisms they say they have.

I've had good luck with Custom Probiotics' six strain blend and Natren's non-dairy Bifido Factor, Megadophilus and Digesta-Lac powders. Others here can recommend other high quality brands. Ideally, you want to buy a brand that's been tested by independent labs and has excellent customer testimonials.