Looking for advice on proper dietary needs following my Radical Cystectomy.

[lefmike]

Hello again everyone.

I have some questions that I’m having trouble finding answers to regarding proper diet after an RC.

I had issues with constipation right from the start, I would need to take a laxative to get anything to move.  The laxatives worked but put an awful lot of pressure on my bowels and I would be in agony after having a BM,  but I had to get it out so I put up with it.   I’m now in week 9 post-op and I’m still having issues with bowel pain, but thankfully its not nearly as bad as previously and now the constipation has seemed to sort itself out to some extent.   I can now have a BM   but it does require some work on my part which I understand is not a good idea…   Anyway I’m looking for some ideas from the good people here..

I understand the a high fibre diet is good AND BAD, and that eating any raw veggies and fruit is still a bad idea.   Does anyone know where I can get dietary information for people having bowel resections?  I have looked and Inspire an offshoot of BCAN net  and there is a lot of conflicting information,  some say high fiber, other say take fiber right out as it bulks you up and causes more issues.  I now understand things like corn I may never be able to eat, same with raw veggies?   So if anyone has any suggestions as to what I should try to relieve the issues I presently have it would be much appreciated.  ALSO,  after a certain period of time  should I not be totally healed in my bowels or is this maybe a lifetime issue now?

Any suggestions on where to find this info would be greatly appreciated.

 

Thanks and best wishes as always…

 

Mike

 

 

 

 

[Stever]

Mike,
I had a cystectomy and about1 week after getting out of the hospital, I was back to a regular diet. I didn’t eat as much but I was able to almost anything I wanted.
As I said in your previous post, I had some constipation issues in the hospital but when I got home, I was OK.
Have you tried taking magnesium tablets? Restorolax?
Are you drinking enough fluids. I drink 2-4 L of water a day as well as milk and other drinks. I don’t drink coffee or tea but coffee can be a diuretic.
Are you still taking pain pills? Those will bind you up.
Have you talked to your family doctor or your surgeon about this?

[lefmike]

Thanks for your reply Stever,  I drink 3-4 liters of liquids a day,  including coffee and water and tea. My ostomy nurse who just saw me says I’m very well hydrated  so that covers one issue that could have been causing causing my constipation issues.   I was/am  using Restorlax when I’m constipated for more than 4 days.  I have a chronick back issue and failed back surgery that forces me to use opioid pain killers which has caused me constipation issues in the past.  I have lost 30 pounds and this has helped me with my back and knees which means I’m now trying to lower that opioid use.

What I’m trying to do now is find out what helps with diet,  I’m getting such conflicting information regarding high fibre vs. low fibre.

See see my Uro surgeon in 2 weeks and I’ll be bringing this up with him but from what I have read elsewhere, urologist tend to send you to internist regarding bowel issues which seems weird since they are the ones that removed and dissected my bowel in the first place.  Maybe he’ll get me into seeing a dietician who can direct me on what is safe to eat and help me with my movements to the point I’m not in agony after have a BM.

Thanks for any input

 

Mike

 

[marysue]

Hi Mike:

I’m sorry to learn that you are still having issues with constipation.  Not fun especially post op.

Question – Are your stools actually really hard or is it just difficult to pass them?  If the stools are not hard, I suggest asking if you could get your bowel area checked out in case there is something going on that shouldn’t be – i.e. scar tissue build up.  I’m not a doctor so I can’t diagnose and treat – this is just a best guess on my part.

If your stools are really hard then yeah, that would make them more difficult to pass and as you know it is still a bit of a puzzle to figure out how to soften them.  I think I mentioned drinking hot water in another post.  I also suggest trying a probiotic to help restore gut bacteria balance and yes, a consult with a dietician would probably be helpful to figure out which foods would be the best for you at this time.

Have you been keeping track of all the foods you’ve eaten and the effect they are having on your bowels?

Just some thoughts…(((HUGS)))

 

[lefmike]

Hi Marysue

Absolutely I’ve tried a number of the ideas that you suggested,  especially  the hot water and items such as yogurt and prune juice ( actually I have changed that to pear juice)  which is tastier in my opinion and not as sweet.  the last time I took a laxative was two week last Thursday  so close to 18 days ago  so not bad.  The items eliminated are generally soft in texture so I think I’m getting enough liquid.   The issue is the work to eliminate and the pain following that.  I see my Urologist at the end of this month for my 3 month followup adn I plan on bringing up the pain issues I’m having with the bowels.

I’m wondering if there is something I’m eating that is doing this.  I’m now eating a little more bread than I used to as it was suggested to me by an ostomy nurse also more potatoes and such and told to stay away from raw veggies and expecially corn products so those for the time being are NYET.

 

Thank you for your sugestions Marysue  its greatly appreciated and I’ve been taking a lot you say and applying it.

Take care

Mike

 

 

[marysue]

Hi Mike:

That sounds more like an anatomy issue than real constipation.  I’m guessing, but I’m wondering if the actual issue could be at the surgical site in your intestine.  As previously mentioned scar tissue, or maybe things are not quite healed yet and the pain is from the stool passing through the surgical site?

I agree that you should bring it up with your surgeon at your follow up appointment.  I also agree that diet could play a role.  I too, would avoid anything that could irritate the colon.  Corn is tough to digest as most likely would be beans, some whole grains and raw veggies. For veggie intake I would rely on pureed soups minus any corn or beans.

I also have another thought – caffeine can be a digestive irritant for some.  I know I had to avoid caffeine post TURBT and during BCG treatments.  It affected my bladder and it may have bothered my colon as well to some degree because the BCG caused me to have inflammatory bowel issues.  To this day, I still work to make sure that I have at least the same intake of water as tea because if I don’t my bladder lets me know about it and I will get constipated. Like the majority of people I enjoy my hot cup of tea in the AM when I wake up.  Many I know want coffee.  I drink water beforehand and again later in the AM after my tea. I’m wondering if it is contributing to your issues?  I suggest skipping the tea and coffee for maybe a week and see if it makes any difference?  I know that we all like our tea or coffee in the morning but it may be worth a trial run.  If things improve, then you at least have a partial answer.

Anyhow, just more thoughts.  (((HUGS))))

[SJay]

If you think it might be a dietary issue talk to a Registered Dietician familiar with this area. There is a massive amount of uneducated opinion out there when it comes to diet so cross check all advice. (No disrespect meant for those who have posted advice 😉

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