… in doctors’ offices. I’ve had three visits, starting with Dr. Yajnik, a GI doctor at Massachusetts General Hospital. He visited with me on Friday, January 2, when I was home with my parents. My mom, ever the dedicated note-taker, took the following notes:
1. At first, Dr. Y seemed intrigued by the possible connection between Crohn’s disease and the strokes, since clotting and Crohn’s are related. But Crohn’s disease is a chronic problem, and Dr. Y would expect to see some long-standing indication of Crohn’s, e.g., long-term GI issues or more well-established ulcers. Crohn’s ulcers won’t heal on their own, so in this next colonoscopy, if the ulcers have healed, then the culprit isn’t Crohn’s.
2. The ulcers in the photos look more like aphthous ulcers, not serious Crohn’s-type ulcers – more like canker sores.
3. The next possibility is drug-induced bleeding, i.e., aspirin. Dr. Y seemed to think the aspirin alone could cause the problem, regardless of whether it was taken with the Plavix. But again, he didn’t seem too impressed by the ulcers.
4. The “MagCitrate� that Kathy took to prepare for the colonoscopy could itself have caused the ulcers that the Boulder doc saw. (We all got to look at the photos.) It apparently is very harsh and can cause trauma during the bowel preparation. Dr. Y recommends taking GoLytely or HalfLytely instead. There are different flavors available which might help. [The colonoscopy is the third appointment I referred to, and let me tell you: flavors do help, but not NEARLY enough!]
5. Bright red bleeding, even in large amounts, is most likely due to hemorrhoids, which Kathy has. So that could have caused the bleeding. [Dr. Yajnik performed an examination on me. That means he stuck his finger up my butt. When we returned to his office, he announced, "She's constipated and she has hemmorhoids, but there's no blood in her stool." In front of both my mom and my dad. I wanted to die!]
6. Then we mentioned that the Boulder doc had problems with the colonoscopy because there was “so much blood.� Obviously, this would be upper blood, not blood from hemorrhoids. Dr. Y scanned the reports again for that; he had trouble finding anything to that effect. Eventually he did see that the doctor noted some dark blood during the flex sig. Dad mentioned that Kathy had pain the day before (Kathy, I think you said day of, but that isn’t my recollection) [it was both the day before AND the day of] the first stroke, and Dr. Y asked where the pain was. Based on where Kathy pointed, Dr. Y said that sounded like the uppermost colon area. That led to the next bullet point.
7. Dr. Y recommends a Meckel scan to check for Meckel’s diverticulum. The bellybutton connects to the intestine in the unborn baby, and it protrudes into the intestine, right where the intestine meets the stomach. That should then disappear or at least be unobtrusive, but sometimes it causes problems, as in it bleeds heavily. And it can be affected by aspirin. Looking online at this, it seems to be mostly a childhood problem. But Dr. Y said it can first appear at any age, even older than we are. Wikipedia mentions a major league baseball player who lost copious amounts of blood because of this problem. So it’s certainly worth looking into.
8. Dr. Y wrote down for Kathy some blood tests he wants her to have, especially checking for anemia: iron/iron binding, ferration. He is concerned about this because of her low levels during her hospital stay and because of her exhaustion, which Kathy mentioned during the visit, and which she mentioned to us later  has been much worse since the hospital stay than it was before. [This is a load of rubbish. I'm not bleeding and am therefore not anemic. I was tired because of the "no-sleep hospital stay" and because I quit the sleeping medication I took to help me sleep the last night in the hospital and several nights thereafter. Stroke survivors are typically much more sensitive to changes in sleep habits than other people, particularly me; I wasn't a good sleeper beforehand, and now that my basal ganglia (the region of your brain which controls sleep) has been almost obliterated, I'm terrible. It did indeed take me nearly a month to recover. I explained this to my mom, and she said, "Well, I've been anemic and it does make you tired. And you have DEFINITELY been more tired since your hospital stay! It's too long!" Good grief. I shut up.]
9. In flipping through her reports, he said that the Prometheus test doesn’t help. [It would've if it hadn't been negative, right?]
10. Dr. Y would like to be copied on all the reports, and he would like their pathologists to look at the biopsies and pathology reports.
11. It makes sense to repeat the colonoscopy.
12. There is no indication of current bleeding. If the bleeding persists, then Kathy could have a capsule endoscopy done if the other tests don’t yield anything. [No thanks!]
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On Friday, January 9, I visited Dr. Ning. This was my second visit to her; I went to her last May, you might recall, and was VERY impressed. I thought I’d go back and see her again since my crappy Denver neurologist announced his retirement (thank goodness!) and she said next time I’m in Massachusetts I should come see her. Also, because of the GI bleed, I thought I’d hear what she has to say about Plavix and aspirin taken together. Here are my mom’s notes:
Kathy went to this visit with five issues on her mind:
1. Best stroke preventive strategy – Plavix, Plavix plus aspirin, or Aggrenox
2. Alternatives to Sinemet for handwriting.
3. Emotional lability
4. Sleep patterns
5. Fatigue
1. Plavix alone is pretty benign on the GI tract, so Dr. Ning recommends that Kathy stay on Plavix and not take aspirin at the same time, don’t switch back to aggrenox. A study that matched patients Plavix vs. Plavix plus aspirin found that the Plavix plus aspirin was much worse for GI tract bleeding and didn’t confer any additional protection. It’s not unusual for medications to affect the GI tract. She agrees with Dr. Yaznik (she has his notes, and Kathy perused them when Dr. Ning left the office briefly) that Kathy’s intestinal bleed is most likely not due Crohn’s. Dr. Ning asked Kathy if she’d seen one of the two stroke neurologists in Denver that she recommended. Kathy has not but said she’d make an appointment, as Kathy is not too happy with Dr. Smith. Dr. Ning would like Kathy to have a better neuro care system in place in Colorado.
2. Kathy’s lack of confidence in Dr. Smith seems to be reasonable in Dr. Ning’s view, as Kathy asked her about his prescribing Sinemet for her small handwriting. Dr. Ning really took a long time on the issue of Kathy’s handwriting, having her write on paper in the office, then finding a whiteboard in a conference room so that Kathy could write for a long time to see if her hand cramped.
a. Dr. Ning said not to take Sinemet [the Parkinson's drug that Dr. Smith so helpfully recommended]. Parkinson’s patients are deficient in dopamine, and the Sinemet floods the brain with dopamine. Kathy has plenty of dopamine, but because of the location of her strokes, it isn’t received properly. And the side effects are known and not worthwhile.
b. There is another drug, Artane, which can help with writer’s cramp, but Kathy doesn’t have any symptoms of cramping.
c. Dr. Ning suggests that Kathy see an occupational therapist at Mass General, Julie Burke, who specializes in Parkinson’s patients. While Kathy doesn’t have Parkinson’s, the occupational therapist may be able to help her with her handwriting, since she helps people with that aspect of Parkinson’s full-time. However, she is still on holiday break. Dr. Ning will email her and ask if she can recommend any exercises for Kathy. When Kathy is coming back to MA, Dr. Ning recommends that Kathy see Julie.
3. Kathy mentioned her emotional lability and explained how she had stopped taking Zoloft, though she still takes Wellbutrin every morning. Dr. Ning said that SSRIs will help with the inappropriate crying; different ones help differently, and she generally has patients try different ones until they hit upon the one that works best for them. So Zoloft in very small doses may be useful. However, with time Kathy will have less and less problem with the emotional issues. She will continue to improve. So it wasn’t clear to me that there’s a reason for Kathy to return to Zoloft.
4. As for sleeping problems, Kathy mentioned that she takes Rozerem every night at 9:00 and ½ hour later is ready for bed. Over Thanksgiving in the hospital, she got no sleep at all and has been exhausted since. Dr. Ning said that it may take longer for Circadian rhythm to reset in stroke patients. She recommends:
a. Stay active during the day.
b. Keep the bedroom very quiet – no TV, no stimuli, no laptop, no emails in bed.
c. Try OTC melatonin. Start with 1 tablet; if that doesn’t help Kathy can try 2, possibly 3 or 4, but don’t take a fistful. Melatonin can be abused, and it can leave you tired the next day if you take too much.
d. She recommends the following evening routine:
i. Take the Rozerem and melatonin (eventual goal is to not need the Rozerem).
ii. After taking the meds, no TV, no computer. Get ready for bed, relax.
iii. A hot shower can help.
iv. Go to bed. Have Ben read you a bedtime story or give you a massage. (That came straight from Dr. Ning.) [And I like her suggestion!]
5. Dr. Ning strongly encourages Kathy to do more strenuous exercise, 30 minutes a day, minimum 3 days a week, enough to work up a sweat. Stroke patients are generally told to exercise 30 minutes 7 days a week.
a. Benefits of physical activity:
i. Fights fatigue
ii. Body produces its own endorphins, which improve mood
iii. Building muscle helps metabolism and overall helps you feel better
b. Exercise makes a big difference even though it doesn’t seem so. Physical fitness leads to emotional fitness.
c. Dr. Ning recommends working with a partner or group if possible, to help socialization, improve intensity of workout, and help rehabilitation. (Kathy and I have talked about this, and it seems very difficult to make that happen in Nederland.)
6. Kathy talked about her exhaustion teaching. Dr. Ning really spent a long time trying to understand what Kathy does, what the class is like, what aspect is tiring. It seems that the atmosphere in the classroom – the noise, the lack of focus, the distractions – is emotionally fatiguing for Kathy. She would be better working fewer days/week (which she then realized isn’t an option, really) or in a less noisy environment. Dr. Ning offered to write a letter to the math department head or whomever stating that it is medically necessary for Kathy to switch to another classroom. However, she would like Kathy to provide her with a draft of the letter which she can then tweak. She doesn’t want the letter to give the idea that Kathy can’t teach or that she has medical problems that prevent her from being in the classroom. The idea is that the particular class that she is currently in is contributing to her fatigue and impeding her recovery. Again, Dr. Ning emphasized that this fatigue will improve with regular exercise. [I don't know what I think about this. Not the exercise, but the teaching thing in general. Teaching is extremely tiring, but I enjoy it ...]
6. Dr. Ning wrapped up by saying that:
a. Kathy continues to improve. She is stronger physically than she was in April, and she is walking now as if she hadn’t had a stroke.
b. Kathy should take Plavix without aspirin,
c. And she should exercise.
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So today I finished up with my colonoscopy. Fun, eh? The actual colonoscopy wasn’t bad because they sedate you — heavily — throughout the entire thing. =) However, yesterday was MISERABLE.
Dr. Yajnik said that I could take the HalfLytely over an extended period of time. I considered starting in the morning, but decided against it because I didn’t want to be hopping up in the middle of church to use the john. At “lunchtime” — HA!!! — I started with the two tablets that come with the HalfLytely. I also drank a glass of the HalfLytely itself. It was … better than in the hospital! I was ecstatic. It isn’t concentrated. I also got some useful tips on how to take it: (1) Have a slice of lemon beforehand. This seems to stun your tastebuds into not recognizing the “PUKE!” taste from the HalfLytely. (2) Refridgerate it. Goodness, was that helpful. Somehow, the warm Lytely fluid makes you gag much more than cold HalfLytely. (3) I knew this one before, and they didn’t tell you about it on the sheet from the doctor’s, but drink it with a straw. I had another glass at 3:30, and though it made me gag, I didn’t throw up.
The information sheet tells you that you should start pooing in an hour, four at the most. Since I’d started at 12:30, I should’ve been pooing by 4:30. At 6:30, I called the doctor. “No poo,” I said.
“Is your stomach aching?” he asked.
“Yes, it hurts, and it’s making terrible noises. But I’m not pooing.” He assured me that it was working and I should just FINISH THE PREP. Bite me, I thought, but I drank another glass of it anyway.
Around 7, I went to the bathroom. When I say “went to the bathroom,” I mean I sat on the toilet while a dribble of clear liquid poured out my backside. EXCELLENT! If it’s clear, that means you don’t have to drink any more prep. But then I went again at 7:30, 8:00, and 8:30, and it wasn’t clear; it was brown. Ben had me drink another glass of the poison.
At this point, the mere THOUGHT of drinking that stuff made me gag. My mouth filled up with spit. I gagged. I threw up. However, I finished every last drop of that god%@mned stuff. I went to the bathroom again; still brown. “You have one more glass to go,” Ben said. “Drink up!” I looked at him. I looked at the glass sitting on our coffee table. I looked at the lemon slices that were, by now, hurting my lips every time I bit into them.
“I can’t do it,” I said. “Let’s go to bed.” He acquiesed.
I was absolutely exhausted. Clear liquid doesn’t have much in the way of calories, so I hadn’t really had anything to eat in 24 hours. One of the “features” of being a stroke survivor is a dependance on food; without frequent meals, I’m a goner. I melt. You want me to WHAT??? Clean the kitchen?!?!? Nocando. You say that Zamba needs to go out? Sorry! Chaco’s eating my shoes? Give me some food and I might care.
Unfortunately, I had trouble falling asleep. Welcome to my world. Two HOURS later, I was finally out.
But my stomach never slept. It gurgled away throughout the night. At 6am, I finally gave in and got up to go to the bathroom. After one messy poo, I was ready to return to bed. Then, our alarm rang at 8 to get us up for the procedure. However, Zamba had some other ideas!
She’d pooed in our bedroom overnight — a nice, big, juicy, wet one, right in between our closets, for those of you who’ve seen our house. “Oh,” Ben added, “she peed there too.” That explained why my socks were wet! I picked up the poo and went upstairs to let the dogs outside. When I reached the top of the stairs, I looked out our window and stared. We’d gotten 7 inches of new snow! Which is great and all, but did it have to be today?
When the dogs were done doing their business, or so I thought, I let them back in and returned downstairs to get dressed. When, out of the corner of my eye, I caught Zamba squatting just outside our bedroom door. “Zamba, NO!” I screamed. “We do NOT poo on our carpet. Or anywhere in this house, as a matter of fact! Let’s go! Upstairs and outside! Because we are not going to POO ON OUR CARPET! AGAIN!” Goodness gracious. It’s a good thing she’s loveable, because otherwise this dog would be, quite literally, in the doghouse. Outside. Where she could poo all she wanted.
I came back downstairs again to clean up poo #2. “Let’s SpotBot it,” Ben said, referring to our amazing carpet-cleaning machine that he recently purchased for this very purpose.
“It snowed,” I reminded him. “We’re going to be late.” At least that’s what I should’ve said. Unfortunately, I didn’t have the energy. “Sure,” I mumbled instead.
I dragged the SpotBot out of it’s corner in the mudroom, mixed up the oxidizer to go into the tub on its side, and set it to work on the carpet. Ben was still getting out of his shower. “Why don’t you go clean the snow off the car?” he requested.
“After I finish getting dressed,” I answered, cursing myself for letting us sleep in until 8:30am. I went upstairs and got my boots out of the mudroom, which you might recall is gated so that Zamba can’t get our shoes. I was so exhausted that I couldn’t get them on. I finally sat down on one of our kitchen chairs and had success. What do I need now? I thought to myself. Oh yeah, my sunglasses. That took me a minute because I couldn’t locate them. Meanwhile, Ben came upstairs and headed outside to do the car. Before he closed the door, he poked his head back in.
“Can you please move the SpotBot? We’ve got three spots to do and I’m worried we’ll run out of time.” he said. Good grief. We already WERE out of time! We had to leave at 8:45 to arrive at the doctor’s by 9:55, when my appointment was. With the snow, we’d need to leave at 8:30. I couldn’t have known about the snow, by the way, because our internet didn’t work until this afternoon. However, I gave in without arugment.
“And I need you to move our suitcases out of the back of the car so we’ll have room for the dogs.” I nodded. I was *exhausted*. Absolutely, completely, utterly exhausted.
We were ready to go by 9:08. We drove 30mph all the way down the canyon — we got stuck behind some slowpokes, but you couldn’t have gone much faster anyway. When we reached 9th Street in Boulder, Ben asked if he should turn. “NO!!!” I exclaimed. “We’re going to Dr. Gatof’s office.”
Ben was quiet for a minute. Then, he quietly asked, “You mean we’re not going to BCH?” Nope, dearie, we’re not. “Does it say that on your paper?” he asked, insisting that it was the hospital to which we should be going.
“It says ‘Longmont’ right here. See? ‘We’re expecting you at 9:55 in our Longmont offices.’”
“Shoot, we’re gonna be late.” No kidding! I called Dr. Gatof’s office and let them know of our delay. Fortunately, they were very nice and could still accomodate us. And thank Goodness they could! I don’t think I could have stood another day of fasting and drinking that disgusting, gucky, makes-me-puke liquid.
We arrived at 10:15am. ‘They’ quickly took me back, had me sign my life away, and change into a gown. And they allowed me to keep my socks on, though I declined — they were completely drenched in dog pee. I went through my medical history: surgeries? Yes, I’ve had a PFO closed. Medicines? Yes, it’s a long list. Are you taking Plavix for your PFO closure? No, I take Plavix because I’ve had several strokes. After a long time, a nurse came in to give me an IV. I wished her good luck; you know me and veins. Usually, I watch them, but this time I closed my eyes. Maybe I should do that more often, because she got it. On the first try. I hadn’t had anything to drink beforehand, either. (You’re not allowed to before the anesthesia they administer; there’s a risk of puking.) Finally, Dr. Gatof appeared and answered my myriad questions, most having to do with my visit to Dr. Yajnik.
He patted me on the should, wished me sweet dreams, and disappeared. Ben gave me a kiss and did the same; they don’t let spouses stay with the patient during the procedure. “OK,” announced my nurse, “here comes the Versed.” 30 seconds later, the ceiling was running. It was *fascinating*. Just like during my PFO closure, the picture on the ceiling and the lights were moving around, top to bottom. It’s fascinating that the direction is consistent. I said something, ridiculous I’m sure, to the nurse, who laughed and said, “I guess it’s working!” Then, a minute later, she gave me the sleeping medication — Phyentenol (sp?), I believe.
Now, the last time I had a colonoscopy, I remember waking up mid-procedure, but I don’t think I wrote about it. I remember waking up and feeling something wiggling around my insides. I was able to open my eyes wide, but I couldn’t say anything. They must have given me something because I don’t remember anything but the nurse saying, “Uh-oh, she’s awake!” What it is, I have no idea. It could’ve been the sleeping medication, but it also could have been the amnesia-inducing stuff. They didn’t mention it afterwards, I assume because they thought I’d forgotten about it. I didn’t, though.
This time, I remember waking up, but not quite as vividly. I heard them talking about my bowels and felt a tickling in my abdomen. It’s a very strange feeling, having something snaked up your butt and moving around on the inside. I’m not even sure I remember it, however … my recollections are fading this time. It was weird, but not panick-inducing.
But the anesthesia took forever to wear off. They wheeled me into a recovery curtain; I slept. Dr. Gatof came by with his findings; I slept. The nurse woke me up; I slept. Finally, the nurse came in and instructed me to sit up on the bed and slowly get dressed. Slowly, I did! I recognized the feeling of extreme tiredness; it felt like I was moving in slow motion. I thought about everything I did before I began. Get my shirt. Check. Turn it right-side out. Check. Put my underwear on. Check. One leg in my pants. You’re doing great! OK, other leg. Oh, my boots. Why’d it have to snow again?
When I was done, I sat down in the wheelchair they’d gotten for me and dug into the container of Cresent Cookies my mom gave me before I left Boston. (Thank you, Mom!) I was starving. The nurse caught me and told me she’d get me a glass of water, and that I shouldn’t eat anything until after drinking it. However, I needed to take my morning pills and I needed food to get them down. One won’t kill me, I figured. I was done with the cookie before she returned. She wheeled me to the car and Ben drove me away! And that’s the story of my colonoscopy!
The bioposies will be ready in a week, when I’ll meet with Dr. Gatof to discuss the findings. However, it looks like Crohn’s Disease. Dr. Gatof said that “everything looks better, for sure, but there were some polyps in your colon. We’ll find out from the biopsies what they are and then I can give you a diagnosis.”
Rules be damned, we ate a big lunch at Cheesecake Factory. (You’re supposed to eat ’something light, like a sandwich’, but I was starving and Chicken Romano sounded SOO good …) My meal arrived and I had ~10 bites before I decided I needed a nap. “I’ll just fall asleep right here,” I told Ben. However, he instructed me to go to the car to lie down. After fighting Zamba for my seat, I switched to the driver’s side and lost consciousness for about an hour, minus the kisses I got from my Big Black Dog.
Thank you for taking me, Ben. And, as always, thanks to the nurses! (Especially the one who stuck me so efficiently … you are DA BOMB!)