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Hi everybody I am new to the group I have had UC for about 25 years I have been all types of medications and have been treating flares with 40 mg of prednisone for the last several years I develop kidney cancer 5 years ago stage 3 and had to have a radical nephrectomy the prednisone does not seem to be working for my uc flares and dr wants me to try 6mp but i am reluctant because i have already had cancer and only have 1 kidney with stage 3 kidney disease Praise the Lord i have been cancer free for 5 and a half years now. I am considering having J pouch surgery because all of this medication is not good for my remaining kidney I am so confused and scared I'm not sure what to do it is a very tough decision I have heard a lot of negative things about biologics and chemo treatment pills and have also heard a lot of negative things about J pouches is 52 years old too old to consider the surgery I know the ultimate decision is mine but I would love to hear some feedback any advice or feedback would be greatly appreciated I  personally do not  know anyone who has a j pouch feeling all alone with a very tough decision to make

Karin

 

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Welcome, Karin! You really are facing some tough choices.  Your reduced kidney function creates some special challenges. 52 isn’t too old for J-pouch surgery, but each surgery can challenge your body (including your kidney). Just like the medications, surgery isn’t risk-free. As far as the medications go, it’s important to distinguish between drugs that can directly harm your kidney vs. drugs that need to have their dose or frequency lowered because your troubled kidney won’t process them as quickly as a healthy kidney. The risk in the second case is getting the dose wrong, but not really a threat to your kidney. I think 6MP falls into that category, though (like biologics) your prior cancer has to be considered.

I think you’ll find a path forward, and you really have to get your UC under control. In addition to having an acceptable quality of life, the risk of colon cancer from UC is much, much higher than any cancer risk from 6MP or biologic medications.

Thank you so much Scott for your reply I spoke with my nephrologist today and since I have only had one clear up this year he thinks prednisone to put me in remission is a safer idea than the 6mp I definitely have to get my diet straight which is also another challenge for me low fiber diet which is good for my UC is bad on my kidney and the diet that is good for my kidney is bad for my UC that is just me I have always been an overachiever LOL thanks for your kind words I am staying positive I need to relieve stress in my life for sure and add exercise wish me luck and thank you for your response

Whilst undergoing my J pouch surgery, there was a 60 year old, a 72 year old and a 84 year, all within the same ward and all at various stages of pouch surgery; so 52 isn't too old.

Also, if you feel the need to regain your fitness or maybe lose a few pounds, rather than think of exercise; to start with, think of it as increasing your activity level; walk, when you would otherwise drive or use public transport; park the car further away from the shops encouraging yourself to walk or alight the bus a stop earlier, you'd be surprised the difference this can make, if adhered to.

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From my own experience, age did not make a huge difference.  I was almost 61 with my first surgery and had made Takedown just prior to turning 62.  My recoveries were not bad at all.  I have settled into my pouch pretty well.  However, I also didn't have any other significant health issues going into my surgeries.  I had 3 steps done laporiscopically, which helps to have better recoveries.  I also had an excellent surgeon.

 

I was 57 my first of three surgeries. They were done robotically. I had my last surgery may 15th. and turned 59 today. It's early days for me, but I'm doing very well. I handled all of my surgeries well. I had UC also. Some of the drugs prescribed for UC and Crohn's are aweful. I was taking very high doses of steroids most of the time because nothing else would even come close to working for me. Good luck to you with your decision. I wish life came with guarantees, but it just doesnt. Just make sure you have a great surgeon

Really like the thought of being able to get off medications due to already having cancer and having one kidney my friend has Crohn's and says he would only do the surgery as a last resort but the thought of getting rid of UC totally and being able to get off maintenance medication seems like a good option I am so glad to hear from others to have been there done that robotically was that done in one two or three stages

Thank you Susie so glad to hear you are doing well now sounds like the worst is behind you I know there are risks with both options and living with UC for all these years has been an ordeal but if it wasn't for what I thought was a bad flare but was actually c-diff they may not have found my kidney cancer wishing you many more years of a happy healthy life

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