What to ask the surgeon re: post reversal issues

[cathy123]

Hi all. I have my 3 month followup with the surgeon Thursday after reversal last September. I am so happy to be done with treatment, but am still having lots of accidents and clustering. At times this was very painful and I was having a lot of bleeding but that hasn't been an issue the last few weeks. Now I have between 10 and 30 bms a day and I really can't sense that anything is happening til it is too late, thus the accidents. I get thru the day pretty well but evenings are worse. For about two months I was using citrucel, but have discontinued for now as it didn't seem to help. As far as I can tell immodium has zero impact on me. I have been keeping a food journal but haven't really drawn many conclusions other than sometimes alcohol seems to make things worse.

I am going to talk to him about this, and am wondering if there are any specific medications, protocols, etc that I should ask him about? Obviously best case is finding a way to improve control and reduce the number of bms each day. If this doesn't happen it would at least be great to have something I could take to stop things up so I can have a night out, travel, etc without worrying.

Thanks
Cathy

[ozziej]

Hi Cathy,
Sorry you are having a hard time . Your experiences are very similar to mine with the exception that I've always had pretty good control. I put that down to two things: before dx I had severe constipation so after reversal, with the exception of the very first week or so, I never really had loose motions, mine have almost always been well formed. The other thing was I did lots of pelvic floor exercises. I also think that things have improved for me since I returned to having my homemade muesli for breakfast, which consists of a mixture of rolled oats, all bran, cinnamon, and dried apricots/apples/peaches/prunes. So, I was wondering whether the questions you might ask could include:
Suggested foods to bulk up the stool?
Maybe a referral to a dietician re Q1
Maybe a referral to a physiotherapist re Q2, preferably one experienced in working with women with post-natal control issues?
A prescription for a souped up version of immodium. I know this is available but don't know what it's called.
I know it's probably not much comfort but I really do think that the only thing that has really made a difference for me is time.
Hang in there, it really is still early days.
Jan

[O Stoma Mia]

... I am going to talk to him about this, and am wondering if there are any specific medications, protocols, etc that I should ask him about?

If I were in your place I would ask the some of the following kinds of questions

• How low was the lower (distal) cut when my tumor was removed (how many cm from anal verge)?
• How high was the higher (proximal) cut when my tumor was removed (how many cm from anal verge)?
• To what extent was a sphincter-saving operation possible? Were there any problems in carrying out a sphincter-saving operation?
• How much rectum now remains after LAR surgery (cm)?
• How many sphincter-control nerves had to be cut (because they terminated in the resected portion of the rectum)?
• How many sphincter-control nerves remain after LAR surgery?
• How much damage was done to the sphincter itself during LAR surgery?
• Was any damage evident from the neoadjuvant chemo-radiation sessions that I had?
• Do you know of any sphincter strengthening exercises or bio-feedback exercises that could be done to improve my sphincter control?
• Are there any pelvic-floor restoration surgeries that could be considered in my case?
• When do you expect that my bowel control problems will stabilize?
• What kind of bowel control problems will still remain after all the healing and improvement has taken place?
• Can you refer me to some medical specialist who can deal directly with bowel control problems?

[cathy123]

Thanks Jan and o stoma - I appreciate the support and the ideas.

[tammylayne]

Hi Cathy....

I agree with what others have said. It is still early, and your surgeon might have some suggestions. However...my personal exprience has been that the surgeons do not always understand or know what to do with us after the surgery. Having said that, there are other professionals out there that can help. There were several great suggestions in the previous posts.

I sometimes hesitate to say this,,,,but you did ask for suggestions, so I will I suffered for over a year . My first 5 months or so I did improve,,,but never to the point of satisfaction. I was having on average 20 BMs a day...many days that number reached over 30. I spent many hours stranded in public washrooms, couldn't go to out of town work functions with co-workers for fear I would not be able to leave when the group did. Sleepless nights??? WAY too many to count. Accidents. And stress. Lots and Lots of stress. I started doing the daily enema 2 years ago and it CHANGED MY LIFE. Once a day - 30 minutes every morning and I am done for 24 hours. No accidents...no clustering, no sleepless nights, and NO STRESS. And the only part that is different is for about 90 seconds a small tube puts about 2 cups of water inside me that immediately comes out of me. Done. If someone told me tomorrow that I could have 4 or 5 BMs a day or do it this way, I would stick to the daily enema. It is just that easy.

I am having hernia surgery in a couple of weeks and I know that for 2/3 weeks I probably will not be able to do an enema...and the thought of that is driving me nuts. Probably will b the hardest part.

I only mention this to show ther are other options, but PLEASE talk to your docs and other professionals because yes...it is early and you will most likely continue to see improvement....and there are things out there that can help.

Wishing you the very very best...

[cathy123]

Saw the surgeon. Most importantly no sign of recurrence, so that is good. He was shocked when I told him I am usually in the bathroom over 10 times a day (and sometimes much more) and am having accidents. He gave me a prescription for something stronger than immodium (I think he said lotomil, haven't picked it up yet). And he wants me to start taking fiber supplements again and keep at it til I see results. I am trying to decide if I should finish off the big tub of citrucel I have partly used or if I should try a different type since a tablespoon a day of citrucel didn't seem to help. He also said to keep doing kegels.

Not sure if he was a huge help yet, but he definitely seemed concerned and wants to make this better so that is good. And I am happy to have a good report otherwise. Next step colonoscopy and CT scans in March. Meanwhile I have a job interview Monday so am hoping my bowels cooperate for that!

[shade]

I'm 12 mos post reversal and I think my experience has been a bit worse than most others described here. I've had ups and downs with gradual improvement. Throughout, my surgeon has been generally unhelpful. I guess he is more concerned with doing surgical procedures than providing follow up care. I saw a PT who was helpful. Along the way, I tried a FODMAP diet to see if anything was irritating my insides - apparently nothing in particular. Small meals and plenty of water works best. Things are tolerable now, but it took awhile.

Hang onto that Citucel, I go thru tubs of that stuff pretty fast. Right now I am trying Optifiber, also called Benefiber. Keep trying different things but time seems to be what it takes. Good luck!

[JDMNYC]

Saw the surgeon. Most importantly no sign of recurrence, so that is good. He was shocked when I told him I am usually in the bathroom over 10 times a day (and sometimes much more) and am having accidents. He gave me a prescription for something stronger than immodium (I think he said lotomil, haven't picked it up yet). And he wants me to start taking fiber supplements again and keep at it til I see results. I am trying to decide if I should finish off the big tub of citrucel I have partly used or if I should try a different type since a tablespoon a day of citrucel didn't seem to help. He also said to keep doing kegels.

Not sure if he was a huge help yet, but he definitely seemed concerned and wants to make this better so that is good. And I am happy to have a good report otherwise. Next step colonoscopy and CT scans in March. Meanwhile I have a job interview Monday so am hoping my bowels cooperate for that!

Cathy -

Good news on the no signs of recurrence - congratulations! (and you are right, that is the most important thing). Based on my reading here and elsewhere (and experience) I have the sense that there is a big disconnect between what the surgeons expect and what we actually experience. My surgeon too seemed shocked that I was in the bathroom 20+ times/day. Be interested to hear how/if the lomotil helps. And good luck on the interview!

Jim

[O Stoma Mia]

Saw the surgeon ... He gave me a prescription for something stronger than Imodium (I think he said Lotomil, haven't picked it up yet)...

Lomotil (diphenoxylate and atropine) as an alternative to Imodium (loperamide):

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48955#p380112
.

[ozziej]

Hi fellow reversalists.
Great news about no recurrence Cathy. Glad to hear that you'll be trying lomotil...Hopefully it will help. I know this bit of info won't bring much comfort either but I do think it's helped me...Try as much as you can to resist going to the loo each time you get the urge. Yes it is painful but if you can breathe through it (not unlike child birth) it often disappears for a while. Doing this seems to encourage the neo rectum to stretch and hold more.
Best wishes
Jan