Slightly elevated BP

[tex]

FWIW, I take 10 mg of lisinopril, (an ACE inhibitor), at bedtime, and 25 mg of metoprolol tartrate, (a beta blocker), at bedtime, and again in the morning, (but not if/when my systolic BP is below 100), plus 75 mg Plavix each morning, all as a stroke-deterrent. I was also taking 20 mg of simvastatin, but I stopped taking it in March, to see if it was the cause of my finger stiffness/lockups, (apparently it wasn't), and so far, I haven't resumed taking it again. Anyway, all this seems to lower my BP by an average of about 15 mmHg. It typically averages around 115 mmHg, these days.

Of course, technically, it couldn't affect my colon, anyway, (since I no longer have one), but presumably, the risk with beta blockers, statins, and bisphosphonates, is lower than with NSAIDs and SSRIs, according to the statistics cited.

Tex

[sarkin]

Thanks, Tex - good to know. I know my prescription-free days will come to an end... I just made an appointment with the GI who originally diagnosed my collagenous colitis back in '97. I haven't had that first colonoscopy I'm long over due for, and I like the guy and think he might even listen to my concerns about the prep (I know, everyone hates it), and about my past idiosyncratic reactions to anesthesia. I told his nurse that I now know I have celiac genes (without getting into my whole Enterolab adventure, which I actually can't wait to share with him) - and she said I'm definitely seeing the right guy. I believe it's Barbara's doc, too - Mark Chapman, MD, at Mount Sinai. Like him in '97, hope I like him again!

Still hoping to stay Rx-less a little longer, but not wanting to win that battle and lose the health war!

I think my current stroke risk is low, but my mother certainly had had at least some undeteced small ones before the 'medium' one she had at 68yo (and at least one thereafter, plus partial-complex seizures I always attributed to the stroke damage, but now suspect may have been connected to gluten as well).

Love,
Sara

[sarkin]

And a p.s. about all that - I believe my stroke risk is going to be lower, because I have corrected my diet... and on the other hand, higher than it would have been if I had never eaten gluten my whole life long, or if I'd never triggered into symptomatic gluten intolerance / MC. What that means for my stroke risk is anyone's guess. Of course, the statistics on risk factors all include lots of gluten-sensitive people who don't know it (yet).

I think I'm ready to try fish-oil again, if I can find one that doesn't have flavorings.

--Sara

[tex]

Of course, the statistics on risk factors all include lots of gluten-sensitive people who don't know it (yet).

That's a very important observation, IMO. Many of the "normal" ranges for various test results were worked out years ago, and once they are determined, it seems as if they might as well be chiseled in stone, because it practically requires an act of Congress to get them changed. I agree that there is almost certainly a significant percentage of supposedly "normal" cohorts in many of those studies, who are actually not "normal" at all, due to conditions overlooked by those in charge of the studies. In some situations, it's possible that certain diseases that might have an effect on the outcome, may not yet have even been described when the study was made. As a result, IMO, diagnostic and/or treatment parameters are corrupt, (to varying degrees), in many cases.

On another note - are you aware that there is a possibility that the prep solutions commonly used for colonoscopy exams might in some cases, trigger a state of chronic inflammation? Of course, Fleet Phospho Soda was recalled because of the risk of acute kidney damage, but there is some evidence, (we've discussed this before, but I can't recall if anyone posted a reference on it), that colonoscopy prep solutions, (or clean-out solutions), in general, may cause intestinal inflammation in many patients.

When Polly received a clean biopsy report approximately a year ago, about 10 years after her initial diagnosis, we were all thrilled that she showed absolutely no histological evidence of MC, after treating her symptoms by diet changes alone. A few months later, however, she apparently relapsed into a full flare, and had all sorts of difficulty resolving it. There were other issues involved, (mostly stress-related), but I can't help but wonder if the prep solution might have initiated conditions that culminated in a loss of homeostasis that made her vulnerable to the flare that subsequetly developed. It has frequently been reported, for example, that patients with UC sometimes suffer a relapse of symptoms, following a colonoscopy.

http://deepblue.lib.umich.edu/bitstream ... 49_ftp.pdf

It is presumed that doctors are obligated to first, "do no harm to the patient", but we all know that in the real world, it isn't that simple, and such goals often fall by the wayside, in the interest of "universal guidelines" for "production line medicine". It seems that the concept of "do no harm", often gives way to a "the end justifies the means" mentality.

Love,
Tex

[klhale]

I take 2 (1200mg) Fish oil capsules 2x a day, and after a couple of weeks my blood pressure went down significantly, by 10 points, and sometimes more. Also, it raised my Good cholesterol (HDL) by the same 10 points.

Also, I recently bought some Welch's Heart healthy grape juice, as it is suppose to really do wonders for HBP.

It's so fantastic!

karen

[sarkin]

WOW, Karen - fantastic is great! I had forgotten the magic of grape juice (read something about that a couple of years ago, and bought some for my mother). I loved fish oil - I am nervous to make an experiment (what if there's something in the capsule, or the flavoring...), but will do a little research and get the safest version I can find.

Tex - YES, I am very concerned about the prep. Heck, I'm concerned about the drug they'd use to make me all relaxed through the procedure (sounds insane - I am all about the no-drugs thing generally; had an awful response to anesthesia for a 'routine' procedure; and have had 'issues' with inactive ingredients that messed me up - much less the active ones). A friend's acupuncturist persuaded his GI to do his colonoscopy without any drugs at all: very slowly, relying on communication and the patient's exceptional relaxation/meditation skills. (Maybe I should start acquiring those skills - but of course that still leaves the problem of the prep.)

I could do a tiny 'dose' of dairy or wheat, followed by a few days of clear liquids - hey, I've done that before! But I am betting that won't fly ;) I did read Polly's story, when I first joined. I remember her saying that she had seen the photos and noticed how red and inflamed the gut looked. YIKES. If Polly could be microscopically "MC free" and symptom-controlled for so long, and be re-flared... how much more easily might I be triggered just starting out on this journey?

Like our BP/stroke risks... I cannot know my colon cancer risk. I could have it right now, though it has never been in my family that I know of. I sure don't want to destroy my health to save my health. My current plan is to make agreeable noises about a colonoscopy, and not to have one anytime soon.

Oh - and it's not just the prep - the procedure itself is not risk-free. I would guess that I'm about as vulnerable to tearing now as at any other time in my life, other than 2 months ago.

If I can't work through this with the GI doc I'm hoping to see, then I will know he's not my guy. (I hope he is, though.)

Love,
Sara

[tex]

Sara,

I finally found this past thread, that might be of interest to you. It might be interesting to see if your doctor has any thoughts on this issue, when you see him.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12911

Tex

[maestraz]

Sara,
About the colonoscopy prep, it's inconvenient, but no big deal. I had one (my second) this winter that led to my LC diagnosis, and I actually felt better for a few days afterward. My advice is to schedule it for first thing in the AM--if you schedule for later in the day, they give you a prep procedure that continues in the AM, which wouldn't be fun. Plus you'd be hungry. The anesthesia they use is quick acting, I think it's called propranol or something like that, and you wake right up, with little grogginess, at least I did. but I don't have any history of weird reactions.

Based on some reading I've done, Mt. Sinai is the place to go in the NYC area for treatment of MC. My GI did her residency there, and immediately knew to look for MC by my description of symptoms, vs. Messing around with IBS, saving a lot of time and misery.

And, I see by your profile that you are a Brooklynite. My daughter lives in Park
Slope, which is SO beautiful!!! Unfortunately,she's moving from there next week, and we will miss it a lot.

[sarkin]

Thanks, Tex. I've been quietly assembling my ammo for this conversation. I don't *have* to have a colonoscopy at all. It may be a fine idea, and it may save me from other problems, and perhaps I might be persuaded (if occult blood in stool were found - or looked for). But I sure don't need to do any risky prep. (And also, I'm concerned about any/all anesthesia, from my past experience and my mother's.)

Super helpful. I would be perfectly capable of consuming nothing but clear liquids for as many days ahead as they'd like, but they'd have to trust me. Maybe we'll form a trusting relationship - we shall see!

L,
S

[alclarkson]

I've noticed an increase in BP since my diagnosis 2 months ago. I'd always been in the 110s/70s. Now I'm in the high 120s/90s. It is borderline prehypertension, but it is high for me and makes me a bit nervous. I know being dehydrated can increase BP, so I'm hoping once I get this nonsense under control, my BP will lower as well. i was so nervous for my colonoscopy that my BP was 140s/120s. That scared me crapless, literally I was crapless. My prep consisted of miralax mixed in gatorade the night before and liquid diet the day before. I only did half the prep b/c 1/4 the way through I was already passing the gatorade. The day of I was absolutely miserable. I had a migraine, which I suffer from, from not eating anything substainle the day before. I'd never had anesthesia of any sort and work in surgery all the time, and the more info you know, it seems the more you can imagine going wrong. I will never have conscious sedation again, versed & fentanyl. They gave me 200 of fentanyl and 19 of versed. THat amount of fentanyl is unheard of and barely put me out. They say you don't remember but for 3 days after the procedure everytime I went to bed I got sobbing upset. I think the brain is an amazing thing and I was recalling possibly some feelings I had during the procedure. The GI agreed as well, if I ever need anything like that done again, I will need to be taken to surgery and given propafol. I had the EGD first, then he did the colonoscopy. I'm thinking I would be OK w/ conscious sedation for a colonoscopy only, but not an EGD.

[tex]

Andrea,

MC is a high stress disease, and stress usually makes the symptoms worse, so it's a self-perpetuating issue. When you get your MC symptoms under control, you will find that your BP, (and most other markers of general health), will be back to normal.

Incidentally, when I was reacting, I had a major migraine problem. They were so debilitating that some days, I couldn't go to work. The GF diet completely eliminated that problem. In fact, I don't recall having any type of headache in all the years that I've been in remission, (over 7, so far). Many members report significant improvement in all sorts of other issues, after adopting the diet, including classic allergies, chronic fatigue syndrome, RA, eye issues, etc. Gluten can affect every organ in the body, including the brain, since it can cross the blood/brain barrier. Many of us, (including myself), have permanent neurological issues that we can attribute to years of untreated gluten-sensitivity, such as balance issues, peripheral neuropathy, paresthesia, etc.

FWIW, those drugs didn't work on me, either - I was awake and alert during virtually all of my colonoscopy, and I watched the progress on the monitor. Contrary to what the doctor predicted, I can clearly recall most of the procedure, even today, and it was done 11 years ago.

Tex

[Gloria]

I can clearly recall most of the procedure, even today, and it was done 11 years ago.

That's because you have an amazing memory, Tex.

Gloria

[tex]

If I could only remember what I did yesterday.

Tex

[mbeezie]

I'm joining this discussion rather late but wanted to let you know that beta blockers are contraindicated for mast cell disease and can really exacerbate symptoms.

For those of you that don't know my story, my problems officially began with a flu vaccine. It caused mast cell degranulation and a cytokine storm. Instead of blood pressure dropping like it does in anaphylaxis, my body overcompensated and I had a hypertensive crisis (220/180). It is a more rare reaction but one that is not unknown to mast cell patients. After that mast cells were activated all of the strange symtoms began . . . diarrhea, tachycardia, headaches, neuropathy and continued elevated BP. Since doctors had no clue what was wrong with me they gave a beta blocker. I began having really serious symptoms like tremors and severe mast cell degranulation episodes so I disconinued the medicine on my own, despite them telling me not to. It wasn't until 2 years later that I figured out the mast cell angle and could understand what happened. I think I have white coat hypertension now. Whenever I get my BP taken I have PTSD and get very anxious, remembering the hypertensive crisis and all that followed. I need to take my BP 3-4 times and work on relaxing and it always comes back down.

I share my story because I beleive that some MCers have mast cell involvement. Those that have MC triggered by beta blockers probably fall into this category.

BTW, I know there have been a handful of others that had adverse flu vaccine reactions that triggered their diease. Dr. Theo Theoarides recently did a study that showed that thimersal (the preservative in flu vaccine) can cause mast cell degranualtion.

Mary Beth

[sarkin]

Mary Beth,

WOW - I did not know your whole story. I don't blame you for having PTSD.

I have not been a regular flu vaccine patient, but did had them in the past. I wish I knew the dates... as they relate to the original MC incident especially. I also think there was thiomersal (or a close relative) in many formulations of contact lens solution, back before my near and far vision diverged too much and I gave up. (Maybe there still is.)

I think these inter-related issues of immune systems are incredible - the poor body is just trying to make right whatever it can. Good for you, figuring out that beta-blockers were making things worse instead of better.

I am assuming your guess is right for me about mast cells - though I have a pretty trivial understanding of them (despite your helpful links). I'm glad to know about another class of drugs to fight my doctor about (kidding! kind of...). It is frightening how someone as health savvy as you, and as (then) young and healthy, could be spiraled into a vortex of long-term and hard-to-untangle health problems by following the standard medical advice. I'm sure you got that vaccine partly in the interest of protecting your clients and family, as well as your own health. YIKES.

Gonna take my BP a little more often. (When my elderly mother first had a home BP device, it sent my relatively chilled-out husband's BP through the roof. I started making it a game (taking his, mine, my mother's), and repeating it while laughing, till we started getting readings that showed he was pretty much fine. I bet a lot of people wind up on meds just because the cuff feels a little squeezy.)

I bet your BP is pretty stable now - do you test it yourself, away from the white-coat stress? You can come to our house and play the "blood pressure taking is FUN" game, any time!

So grateful for your input, always, and hoping you're feeling great.

Love,
Sara