Tag Archives: Gastroenterologist

Waiting, But Not So Patiently

Day by Day with a Movement Disorder Posted on by 8

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn’t find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I’m trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn’t hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he’s a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can’t imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my “adversity” right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I’m definitely showing signs of depression, and I blame much of it on this unresolved problem.

There’s no doubt in my mind that I am under medicated right now, as far as the Parkinson’s meds are concerned. But there’s no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I’m changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson’s is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it’s like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there’s not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I’ve had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year’s subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I’m on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that’s for sure. BUT, here’s the good part. The brain fog is beginning to lift, just a little. I’m not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don’t feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don’t care, all I know is that I’m thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I’m very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I’m in.

Cpap Adventure Continues

Day by Day with a Movement Disorder Posted on by 6

I’ve been on the new full face mask for a week now, with one extremely good night’s sleep, night before last. I’ve been awake since 12:30AM today, though. I woke up with air just jetting out from under the bottom of the mask, where the silicon soft part had come out of the plastic part of the mask. By the time I woke up enough to realize what the problem was, and then fixed it, I was wide awake. I’m also continuing to have problems with my skin. I’m ready to try the all over the face kind. That’s not supposed to irritate skin, as it fits at the hairline and all around the face completely. This is the last style there is, basically, so I’m about to run out of options, other than not use it at all. That 8 hours of sleep on Sunday night gave me such high hopes, too.

I continue to struggle with terrible gas, and I’ll be calling my Gastro’s nurse today to report in. Stopping the Amitiza just didn’t help any. Nothing has really changed as far as feeling like something is wrong with my elimination process, either.

We walked at the track again yesterday morning, after several days off. This time it was due to DH having some pains, as I think he over did it when we started back walking the other day. Hopefully, he’ll be OK this morning, and we can get our walk in. I also worked in the yard early yesterday morning, putting another pile in the Lasagna Compost area and digging around the foundation of our new garage. We need to get a drainage ditch around the front edge, so I’m hoeing just a little bit each day. I’m also trying to sweep off the driveway every day or so, as that is good exercise for my shoulders. It sure does feel funny, though, trying to sweep left handed. But I need to exercise both shoulders, so I do it, funny feeling or not. And boy, am I right sided. I’m pitiful trying to sweep “backwards”. LOL

I’ve been doing more research, trying to see if there is anything I’ve missed about CPAP. I did find that I’m supposed to have the machine below head level, a fact that escaped me somehow. I didn’t keep it on long enough last night to know if that would stop the “rain out”, as it is called. That’s when the humidifier in the machine causes condensation in the tubing, because the air in the room is cooler. I can’t do without the moistened air, so I will need to deal with the condensation. It got so bad one night that it sounded like the thing was gargling!

I was also trying to find out of the machine is aggravating the gas I’m having, and yes, CPAP does often cause that, as many people swallow the air. It’s supposed to be something you grow out of, and can be lessened by using the Ramp Up switch, which starts the pressure lower so you can go to sleep easier. I hadn’t been using it, since going to sleep has never been my problem. But I did use it last night, and will from now on.

For all that I’m discouraged this morning, after so little sleep last night, I am still hopeful that I will adjust to the CPAP. I’m not so optimistic about my digestive system problem, though, and I am still wanting the colonoscopy. My legs and hands continue to be swollen with fluid, too. We’ll see what the doctor has to say today.

Bits of This and That

Day by Day with a Movement Disorder Posted on by  

I’ve been a good girl, and I’ve tried to use the C-Pap machine every night. I can only say try, because I’m still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn’t stand it past 1:30AM.

I’m pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I’m going to call the tech again this morning for another appointment, since I only have another week before I’m stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I’m starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I’m hoping she can find something else that I can use.

We’re in the middle of a cold wave right now, with high temperatures in the 90’s! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It’s really the only time of day that it’s safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we’ve been there in several weeks. Of course, I’ve been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I’ll walk a mile, but I won’t push it if I’m not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I’m supposed to call my Gastro this week to let him know how I’m doing. I’ll wait a few more days, just in case DH’s explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he’s probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I’ve not had tremors up until recently. Balance wasn’t so good yesterday, either. But I’m not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I’m not sure what I could wear that didn’t look like athletic shoes, but I’m going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I’ve been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can’t completely close my fists. My ankles are badly swollen, too, and my weight is up, which I’m assuming is fluid.

So, I’m still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Whoever Named It GoLYTELY Had a Cruel Sense of Humor!!!

Day by Day with a Movement Disorder Posted on by 13

I said I was going to quit talking about my elimination problems. Well, no such luck, so skip this post, if you’re as tired of reading about it as I am of struggling with it. Anyway, I called my Gastro the other day to tell him that, even though I had gone a week on his full strength Bowel Retraining program, that I still felt blocked, and he called back yesterday. I’m in the process of drinking down 4 liters of GoLYTELY, by the hardest. I’ve had surgery and colonoscopy preps before, but I used Fleet. At this point, I’d say I’d rather drink a small amount of horrible tasting Fleet than a gallon or so of relatively bland tasting GoLytely! I think I’d be nauseated if I had to drink that many glasses of just plain water every 10 minutes, let alone this stuff.

OK, I’ve griped. I still want my doctor to do a colonoscopy, though, because I don’t think I’m going to have any peace of mind until he does. I’ve tried not to worry, but I really do have the sensation that there’s some kind of tissue blockage. So, I’ll have this to go through again sometime or another soon. Gee, what fun.

Now, I’m praying this does the trick and clears out whatever the problem has been. I’m also praying that I will have peace of mind with what my Gastroenterologist tells me, but that I continue to press for a resolution if I’m not. I have learned that I am the best judge of what my body is doing, not the doctors! And I think God expects me to continue to be my own best patient advocate.

Trying a Different C-Pap Mask

Day by Day with a Movement Disorder Posted on by 4

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal “plug” that doesn’t have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can’t remember how long it’s been since I did that. It’s not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I’ve always had this odd thing where I could “feel” a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It’s a good thing I don’t cuss! LOL

I’m calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I’m still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I’ve started going out in our yard and working just as soon as it’s daylight, as it’s just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I’m drenched in sweat.

I’m definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I’m doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability (more recently called Pseudobulbar affect), and it is a PD side effect. He doesn’t want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren’t.

In Wait and See Mode

Day by Day with a Movement Disorder Posted on by  

The CPAP machine is getting a little bit easier to stand now, but I still haven’t slept past 3:00AM with it on. That represents as much as 6 hours of sleep on a few nights, which is definitely better than before. I am having trouble keeping the chin strap on, as it is a soft band of stretchy material, with Velcro on the end. I need it because I am a mouth breather. Without it, I wake up with a sore throat and a dry mouth, as the forced air is being forced right down my throat.

So, I called the people that the CPAP machine came from, and we will take all the stuff into their office on Monday, and they’ll see what they can do to help me.

So far, I’m not satisfied with the results of the Bowel Retraining routine the Gastroenterologist has me on, as I still have difficulty getting my muscles to work effectively. I’m to call him this next week to set up the colonoscopy, if I’m not satisfied with the results, so it looks like I may be scheduling that sometime soon.

So for the time being I’m in a state of limbo, just waiting for the right time to take care of things differently.

I have tried to get more exercise the last few days, but it has to be done at the crack of dawn, literally. I was outside walking around in the front, where the street light shines, at 5:30 this morning. It was already hot, but certainly bearable. I worked in the yard a bit, swept the driveway and sidewalks (a good exercise for my shoulder), and worked up a good sweat. DH and I have both noticed that I’m slowing down again. This symptom of Parkinson’s is called Bradykinesia, and it’s my main problem, both with my legs, hands, and my digestive tract.

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.

6 Doctor Visits in 6 Days!!

Day by Day with a Movement Disorder Posted on by 4

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what’s going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don’t like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I’ve been on the antibiotics since Friday, my left knee no longer looks like it’s getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I’m very pleased with how much it is helping with the constipation problems.

I’ve been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn’t dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don’t want to be hobbling around the way I am now, trying to recuperate from major surgery!

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??????

Digestion Problems Worsen

Day by Day with a Movement Disorder Posted on by 1

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I’ve been really careful about what I was eating, I’m still having bowel problems. For lack of a better word for it, I would call it constipation, but it’s more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what’s going on now. From what I’ve read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won’t gross you out with any details. Let’s just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I’ve been doing the exercises that the Physical Therapist outlined for me. I’m thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy’s things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.