Tag Archives: Zelnorm

No Surgery After All!! WHEW!!

Day by Day with a Movement Disorder Posted on by 9

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.

Things Not as They Should Be

Day by Day with a Movement Disorder Posted on by 4

Well, I was right. Something is wrong with my elimination anatomy. I saw the Gastroenterologist Tuesday, and he sent me to another doctor, who found the problem. This doctor is not giving us a high percentage of likelihood of being able to fix it, though. He’s sending his findings back to my Gastroenterologist, Dr. B, and I have another appointment with Dr. B next Tuesday. I really don’t see much choice but to have the surgery that may repair the problem, even with less than best odds. Not exactly the news we wanted to hear.

Dr. B did give me some samples of Amitiza, the prescription that is replacing the Zelnorm I was taking for the problems with my digestive muscles not working properly, until it was taken off the market. From what I’ve read it nauseates some people horribly, but I’ve been lucky. So far, no problems taking it. I can’t tell yet if it is going to be helpful, though.

Now, this evening, I found a tick on the side of my knee, and the bite area has a red ring around it. According to what I’ve been able to find, that means I’m headed to the doctor tomorrow, possibly to start a round of antibiotics, as this apparently is a symptom of Lyme Disease.

What’s the expression? When it rains??????

Sleep Continues to Be Scarce

Day by Day with a Movement Disorder Posted on by 4

The insomnia is continuing to bother me just about like it has been for several months now. I’m still having constipation problems, too. I’ve been on the Miralax continually now, but when I had to stop taking the Zelnorm, it began to gradually give me trouble again. I’ve been using the glycerin suppositories regularly now for the last week, but the problem isn’t resolved yet. I’m already on a Metamucil capsule every day, besides the Miralax, so I hate to add any more oral medicine for it, for fear it will suddenly work too well. The only other Parkinson’s thing that is going on with me right now is a very stiff neck. I have had like a crick in my neck now for several days, from a very tight muscle, that I just don’t seem to be able to stretch out or limber up. I’ll just have to keep exercising it, and hope for the best.

We had an absolutely glorious drizzly rain all day long yesterday, and I thank God for that. We need about a week of that kind of rain to make a dent in our drought situation, but it’s better than nothing. Our grass finally looks like grass again.

They are supposed to come finish the garage tomorrow, but it looks like it might be raining. That’s OK. We need the rain worse than we need the garage to be finished. We need to put another coat of water sealer down on the garage floor, anyway, before we start putting stuff in it.

Once we can use the garage for storage, we’ll start bringing the furniture that our DD does not want to keep from their house down here. Also, we have stuff in our basement that we can’t get to because it’s in such a mess. Once we have a place to store it elsewhere, we can start emptying the basement of things and get the good stuff out of our way temporarily. Then we’re going to have to make several trips to the dump!! We used to have a landfill dump here in our town, but it was moved to the other side of the county a long time ago.

That wouldn’t have been so bad, but our town garbage collection rules call for household garbage only. They won’t pick up anything that won’t fit in a garbage bag. So, over the years, as things broke, like the washing machine, it just got stuck in the basement. Now we can hardly move down there. Oh, and the nearest Thrift Store won’t pick up the appliances, either. There are certain disadvantages to living out in the boonies, that’s for sure.

DH won’t let me go down in the basement, as he’s afraid I will trip over something or lose my balance trying to walk around all the stuff. I really do think he’s being over protective, but I’ve done as he asked, and stayed out of it. I’m itching to get it cleaned out, though, and it bothers me that I can’t just go down there and work on it if I want to. As it is, I’m stuck with his idea of when it will get done, and his timetable is a lot slower than mine LOL!! C’est la vie. That’s what being married is all about – the give and take of blending two different people’s habits and problem solving techniques together. I just need to work on my patience a little more, that’s all.

Going Through a Depression Phase

Day by Day with a Movement Disorder Posted on by 8

I have really tried to stay positive about all that’s been happening to me over the last year or so, but I’m not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn’t want to change any medicines until after I’ve had the sleep study, there didn’t seem to be any point in pursuing it, as long as we’ve told him about it.

We’ve been waiting to get the garage we’re having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match – right color, but wrong shapes. And we’re stuck with them. That set me into quite a blue funk for the last few days, but I’m getting over that. It’s just a garage. Sometimes it’s hard to keep perspective about things like that.

We’re still dealing with estate business, so that doesn’t help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there’s nothing that would make me consider myself to be constipated, but my muscles just don’t push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I’m planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I’ve had better days.

Zelnorm Is Taken Off the Market

Day by Day with a Movement Disorder Posted on by 4

When I refilled my prescriptions last week, my pharmacist sent me a note that our insurance was no longer covering Zelnorm. I found out today why. It has been recalled. Luckily, the Miralax is doing a good job of keeping my digestive system moving along smoothly, and I didn’t have any problems stopping the Zelnorm. Thank goodness I didn’t have any of the heart problems that some people were having with it!!

That’s twice my pharmacist has come to my rescue. I can’t reinforce enough my suggestion that you buy all your prescriptions from one drug store!

Miralax Effectiveness Evaluation Week 1

Day by Day with a Movement Disorder Posted on by  

Miralax is a white crystalline powder that is mixed with a liquid and taken each day, one or more times, depending on the doctor’s directions. Its purpose is to soften the bowel movement. It is also supposed to improve the effectiveness of Zelnorm, a medicine which helps to improve the rhythmic muscle action of the digestive system. I had read that it was supposed to be tasteless, but I frankly found that a little hard to believe!

I have been on Zelnorm for some time now, but my Gastroenterologist just added the generic form of Miralax to my prescriptions Friday. I tried dissolving the crystals in water the first time, and, at least for me, I will agree that it is tasteless. It does give the water a slightly thick feel, and I could tell it was going to turn me off of drinking water – a purely mental aversion, but one I needed to heed, as water is extremely important! So, I tried it in apple juice, and that worked for me. Then I got the bright idea to just sprinkle it on my morning bran cereal, since it really does dissolve completely. With a little stirring, it disappeared completely, and I couldn’t even tell it was there. So that’s the way I took it yesterday and today.

I didn’t see any results at all from using it until the third day, and even then it was of minimal help. So, today I went back to using the glycerin suppositories after breakfast, and the combination was very successful. (I had stopped using the suppositories Friday, not knowing how my system was going to react to the Miralax.) The bloating has definitely gone down, as my pants are looser. I’m still belching as soon as I put anything in my stomach – even water – but it isn’t as bad as it was.

Today was the first day in a long time that I didn’t end up with the hot pad on my tummy, trying to ease the pain, so I can see the beginning of some improvement!

I’m sure everyone’s experience with the effectiveness of Miralax will be different, depending partly on why they need to use it. But I can say that someone with Parkinson’s, with a long term constipation problem, should certainly give it a try, anyway. The generic version is not very expensive, it seems to be gentle on the system and suitable for long term use, and it seems to do what they say it will do – all while being as close to unnoticeable as a medicine you have to drink is likely to ever get.

You will find a large number of testimonials about people’s experiences with Miralax at the AskthePatient.com site.

Parkinson’s and Constipation

Day by Day with a Movement Disorder Posted on by 11

I feel like I ought to warn you that this post made me uncomfortable to write it, and it may make you uncomfortable to read it. It’s not considered “polite” to discuss bathroom problems, and I understand that. So just skip this one, if you like. I’ll certainly understand. But if you have Parkinson’s, or know someone with Parkinson’s, you might want to keep reading.

My Gastroenterologist has added Miralax to my Zelnorm prescription. He’s recently started me on a regimen of daily glycerin suppository use, too, in what’s called Bowel Retraining. I’ve already been on Metamucil capsules for several months now, and also eating a high fiber bran cereal every morning. The Parkinson’s, or a combination of the PD and my meds, has left me with very little muscle power in my digestive system, plus diminished nerve awareness as well. He says that’s where the bloating, nausea, and gas are coming from.

I am not allowed to have coffee, any caffeine drinks, carbonated drinks, chocolate, any dairy products – including cheese, any citrus fruits or tomato based foods, peanuts, drink liquids with meals, or eat anything within two hours of bedtime. And I’m sure I’m leaving something off the list! It seems like every time I go see him he adds something else to the list, anyway. Some things on the list are for my GERD, and some are for the IBS (Irritable Bowel Syndrome) symptoms he’s treating.

Constipation is one of the most universal symptoms that people with Parkinson’s Disease deal with, but, let’s face it, it’s not something anybody likes to talk about. But I want this blog to be useful to other PWP, so I don’t want to leave out this information, even though I really don’t like coming right out and admitting that I’m constipated. I really didn’t realize I was, as everything seemed OK to me. But it’s obvious to me now, after taking all these high powered medicines he’s had me on lately, that I am, and have been for some time now.

Again, in the interest of being helpful to other folks with PD, I found this really well done site about constipation at MedicineNet.com.

Well, this was not an easy post for me to write, but I hope it turns out to be helpful to someone else with Parkinson’s who’s suffering some of the same symptoms I have been for so long. This is not a battle I have won, by any means. In fact, judging by the lack of success my doctor has had so far in dealing with my problem, I’m probably going to be dealing with this off and on the rest of my life. That’s probably the case with most PWP, as well. If any one chooses to comment, I’d appreciate hearing what you have to say about how you’ve dealt with this problem.

Same-o Same-o

Day by Day with a Movement Disorder Posted on by 6

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn’t get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I’m still not getting more than a few hours sleep at night. The Ambien just isn’t working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I’m being just as careful as I can with what I eat, and I’m not having any bathroom problems, so I have to conclude that this is due to the Parkinson’s itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson’s meds don’t work on these involuntary muscles. That’s what the Zelnorm is supposed to be helping, but I don’t really think it is. And, thanks to how lousy I’m feeling, I’m losing a good bit of weight.

So it looks like I’ll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I’ve had about as much of this stomach trouble as I want to put up with.

Flu Shot Side Effects?

Day by Day with a Movement Disorder Posted on by 2

Leave it to me to be one of the small percentage of people who get the side effects from having the flu shot! Maybe it’s because I’ve been so sick this year with the colitis, or because I was so recently sick with all the gastro problems. Or maybe it’s the Parkinson’s or the meds I’m on. Anyway, I’ve been aching all over for the last few days and running a low grade fever. I’ve also had the first headache that I can remember in a long time, so I’ve been taking extra strength Tylenol pretty regularly.

I’ve also had a bout of having to be close to the bathroom again, if you know what I mean. The gastroenterologist had told me if I started having that problem to cut the Zelnorm pills in half, so that’s what I’m doing now. It hasn’t solved the problem yet, so we’ll just have to wait and see. My digestive system is so sensitive anyway, that all these medicines are dealing havoc with it. I’m glad most Parkinson’s folks don’t have this much trouble!!

I do feel better today than I have the last few days, so maybe it’s about over now. I hope so, anyway.

All’s Well with My World!! Glory to God!!

Day by Day with a Movement Disorder Posted on by 9

I went to the Neurologist Thursday morning, and reported to him about the Endoscopy and Monday’s visit to the Gastroenterologist. I told him about the Zelnorm, and how it is definitely helping. I also told him about the hair loss, and he said if it continues he’ll try to help with it on my next visit. He agreed that it was time to take me off the Sinemet YAY!, and go on just the Requip, which is what I was hoping he would do. So I don’t see him again for three whole months! I feel like a free woman!!! Requip is taken with meals, so no more of this hour ahead stuff, and it doesn’t have any dietary restrictions, either, so I can eat what I want with it. My gastro doctor has put enough restrictions on my diet as it is, so I’m glad to not have more added to those from the PD meds.

Thursday was my DH’s birthday, but I couldn’t get him to spend any money on himself at all. I was hoping there would be a movie he wanted to see, but no such luck. Then I tried to get him to buy a book or a CD, but he wouldn’t do that, either. So…. I needed to get a pair of walking shoes, fitted by a knowledgeable salesperson, something I had researched on the Internet as being good for Parkinson’s patients, so we ended up spending money on ME LOL. He did let me take him out for a nice lunch, though.

I found out in my research that walking shoes don’t break on the sole in the same place that running shoes do. Since PD folks have problems picking up the foot and putting it down properly, with the roll that everyone else takes for granted, this is important. I was used to wearing running shoes, and I could tell the difference immediately. It really felt odd, and will take some getting used to. It changed my whole sense of balance at first, I was so used to the old shoes.

So this is a post I’ve been looking forward to making. I’m feeling good about my medicines, my stomach is improving, and I’m at a point where I feel like I have a handle on the Parkinson’s for now. Now I just want to proceed with life as normally as possible for as long as possible, enjoying every minute of it, knowing that the time will come when things will change. I feel so fortunate that this disease is progressing slowly for me. This warning time gives me the opportunity to glory in just being alive, and I thank God for every minute of it.