No Surgery After All!! WHEW!!
I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B’s arsenal of Bowel Retraining routines – glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can’t eat again, and it seems to get longer each time I see him.
I’m not allowed to have
soft drinks of any kind
chocolate
nuts, particularly peanuts
any dairy products at all
cruciferous vegetables, such as broccoli or cabbage
beans
tomatoes
coffee
caffeine of any kind
And no telling what else that I can’t think of right now.
It’s hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I’ll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.
There’s now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson’s, rather than the anatomical problem that was recently discovered.
I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.
I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn’t expect to find anything. But he knows I’m concerned, and the colonoscopy will ease my mind.
So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.
Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I’m sure anyone taking the time to read my posts is tired of hearing about it, as I’m tired of having to deal with it, too.
What great news! How glad I am for you! It must be a great relief, and I feel sure that the diet and what-all you have to follow will direct you in feeling better.
It took a long time for me to retrain my system, when my diet changed. But I think I felt the benefits fairly soon, within days.
Good news!
It was quite a feeling of relief, Marion and Ruth, as any surgery is hard on a Parkie. Our brains are already working on a minimum of needed dopamine, so anesthetics can be very hard on PWP for a long time after the surgery.
I do pretty well with the list, Ruth, except for no chocolate. That one’s really hard!!
I was so impressed with this new doctor that I’ve had my records sent to him. I won’t be going back to my old doctor. Not because I didn’t like him, but because I don’t want to have to go the hospital he works with.
What a great piece of news. Such a difficult list of “must not eats” but it will be worth it. I’m glad you found a doctor who explained things so well. It must be so worrying when you hear things you don’t understand. Thank goodness your doctor checked on the reaction between your drugs…well done for finding out the information.
{{HUGS}}
Rx
That has to be encouraging about not having surgery after all, discouraging about the restricted diet. After prepping for a colonoscopy last evening, I truly hope you don’t have to have that done again so soon. Sorry about the chocolate–that’s a hard one to give up.
I sympathize with what you’ve just been through, as DH and I have lost track of how many colonoscopies and endoscopies we have had. The prep is far worse than the procedure! I hope you get good news!!!!
This is great news. Though your comment about the frequency of colonoscopies is sort of under “wow” – How many is it when a person would lose count? I know I would remember up to about 20 or so. But then I tend to be more obsessive.
Congrats – bummer about the diet thought. Have you noticed that internet research is like the modern picking of a scab – for me I can’t tell if it make me feel reassured in knowing at least some of what is going on or just drowned under the info.
By the by – I am VERY grateful about your posts on your bowels – as things like this, which can make life so unbearable, also tend to be the most untalked about. I want to understand the processes in Parkinson’s and this helps me.
I am very glad you stopped by, Elizabeth. I just spent some time skimming over some of your posts on your blogs, and found them to be very articulate and quite interesting. No disability laws in Canada? Odd.
Anyway, I love your analogy of the scab, and I think you’re right, I do obsess and pick at each little thing, via web searches. But hey, that’s the way I’m wired. And I do appreciate you telling me that my bluntness about my elimination problems is helpful.
It gets hard sometimes to talk about such things so publicly, and taxes my ability to express myself in a tactful way, but presenting a full picture of what I’m going through is the whole point of this blog. To leave this part of my life out would cheapen the whole thing, in my opinion.
I look forward to reading more of your blogs and getting to know you!
Zelnorm is still available from overseas pharmacies. I was prescribed it and it worked REALLY well so I was distraught when they took it off the market, so I found it elsewhere. Email me at
rxmeds (at) rediffmail.com
if you’d like to know where to get it 🙂
Good luck !
Thank you for the information, Anne. I will definitely want to find out more about it. I’m still waiting for my Gastroenterologist to finish analyzing my intake/elimination log. When I see him, I’ll be sure to ask if he thinks it will be OK for me to use it again.