A newbie learns lessons .. the hard way

[teagirl]

Hi all, here's what I learned this week:

- don't change too many things at once or you won't know why you feel better. Seems obvious really but I got carried away. I ate out, first time in months, at Swiss Chalet which had an allergy sheet with gluten, soy etc listed. I did a web search and Celiac.org postings reported it was ok. I ate roast chicken and baked potato, and the soft tops of a little broccoli. I haven't touched my beloved broccoli in a long time but it was looking at me begging me to eat it. Now, back with the dreaded D, I don't know if it was Swiss Chalet, the broccoli, or something else (I didn't have oats for a few days) or just the cycle of this cruel disease that brought it back.

- don't get too excited by a few days feeling better, especially if you don't know why. I went from lots of D to 3 days with nothing at all. Nada. I was beginning to think I was blocked or cured (ha!). I was so happy, and that's why I ventured out to Swiss Chalet. I had cabin fever plus I wanted to celebrate the first days ever without D. At the end of the 3 days, after Swiss Chalet, no oats, broccoli, who knows....back to awful D again.

- be grateful. 3 days with no D was wonderful. Appreciate it. It might be the last for a while

- bum wipes feel much better when they are kept in the fridge

I had my CT scan on Monday - not too bad except for the heart racing and the nasty taste. My GI will have the results next week. I hope he'll give me Entocort as it seems this drug works. I also found my drug plan will cover it (80%) so that's a huge relief. Not sure if it's cheaper here in Canada (probably) but I didn't want to have to choose between food or drugs!

[Gayle]

Hi Maxine,

-- that's my story you are telling.

Here is what I am wondering?

You said previously that you take Imodium sometimes?

Well had you also taken Imodium when your 3 day "vacation" started? I've had that experience with Imodium. AND had ALL of the same thoughts you had, regarding that situation!

Imodium seems to be an interesting medication that way. It can sometimes "grab" things for days. But then the same situation re-occurs. Also, Imodium seems to be a medication that we can tend to build tolerance to, so it helps in the short term, but long term --- we need better solutions.

Try not to despair about the ups and downs with your LC. MC/LC just acts that way. Things WILL get better as you hopefully get more help with meds, and are able to learn what dietary concerns may be affecting you.

Cheers,
Gayle

[teagirl]

Hi Gayle,

Yes I'd had quite a bit of Imodium as I'd been pretty bad at the weekend, going every hour, give or take and I was desperate. I had had about 4 Imodium tabs each of 2 days. My last tab was midday Saturday, and it was Sun/Mon/Tue that I was a free woman.

The one thing I didn't say in my earlier post was that before I had the deluge, I did have one small perfect little stool. I was so shocked - haven't seen one for months - I could hardly believe it was mine. The D came back within 12 hours of that.

It did cross my mind that so much Imodium might have done it, perhaps doing its job too well and stopping everything. That's the most Imodium I've taken in one day. I've taken it pretty much every day for weeks but not usually more than 1 or 2 per day.

regards

[Gayle]

Well Maxine,

I am also (just as you appear to be) a big believer in following the printed directions with all these products. And the directions do say up to 4/24 hours.

I was advised however, by the GI's office, that I could take up to 8 a day. What I found was that more really didn't help for long in my case, as I quickly built tolerance to that drug. So it's of some quick help with initial symptoms, but seen it doesn't help, (at least with MC sufferers) for any kind of long-term help with our "ISSUE".

Subsequently I have had occasion to use Imodium again, and just as with that original dose experience -- it "grabbed" again. I have a good friend who was diagnosed with CC/MC within a few weeks of me. She has had much the same experience with Imodium.

When I initially started with the symptoms of CC, before being diagnosed, I related my Imodium story to the PCP, who said, "Really, there are people who live on Imodium". My response was "Boy! that's hard to understand."

To me, it really seems to me that diarrhea without cause (bacterial or parasites or some type of neoplasm, etc.) is not justified in this day and age. I made an appointment with the GI the next day.

Bingo --- a diagnosis --- CC, and living on anti-diarrheals and anti-spasmotics is not the answer.

Best,
Gayle

[teagirl]

I couldn't agree more with that last statement. It's not acceptable for people to have D so often and for such lengths of time. That's why I want the Entocort from the GI next week, not Lomotil which seems to be a stronger, prescription Imodium. I don't want my D managed and I don't want to live on Imodium: I want root cause analysis and what fixing there can be.

In the research I did on D on the web, before I found this new family, I was appalled at how many people had chronic D, many of them pleading for help. Some had had it for years. If my GI's nurse hadn't told me it said LC on my biopsy, I still wouldn't know - I guess he'd tell me next week, 4 - 6 weeks after she told me. If I hadn't pushed my GP and made appointment after appointment, saying get me help, I wouldn't have a GI seeing me and I'd be mental by now. D is considered a nuisance not a serious condition.

As my dear old mum used to say: we can put a man on the moon but we can't ... in this case, give people a diagnosis for their diarrhea?

regards

[tex]

Maxine,

Here's another possible scenario: Some of us alternate between D and C - that's the way that I usually reacted. IOW, after several days or so of D, I would have several days of nothing. About the time that I became convinced that I had a blockage, or a major C problem, I would have perfect "Normans" for anywhere from a day or two, to as long as maybe a week, (but usually just a few days). Then, sometimes I would have nausea, (sometimes not), and the D would start again, and I would go through the whole cycle again. As my gut began to heal, though, from the diet, the "good" part if the cycle would last longer each time, before the D started again. The D didn't stop returning, though, until I finally cut the remaining food intolerances out of my diet.

The effect that Gayle described is certainly a possibility, though. Another possibility can arise because of the fact that Imodium is opiate-based, meaning that it works by slowing down motility. Because of that, it's possible for opiate-based products to cause a serious impaction problem. We have had at least a couple of members report having to go to the ER, because of an impaction problem. Be aware though, that when impaction occurs, it is usually due to long-term use of opiate-based pain killers, rather than Imodium or Lomotil. I mention it simply because it's a remote possibility. It's a confusing situation, because you can still have a lot of D, (but it will usually be very thin liquid), even though there is almost a complete blockage. I would expect that the symptoms to look for, in a situation such as that, would probably be severe cramps, and liquid D, with periods of interruption in the D. It's a tough call, though, because MC can cause liquid D. Of course, normally, without any blockage, the D will be pretty regular, at roughly the same times each day.

I'm not suggesting that's what happened to you, though. Since you were feeling good, when you had the three days with "nothing", it's very unlikely that you were having a blockage problem, especially since you had a normal BM afterwards, (before the D started again), although it's not impossible to have a normal BM, even with a blockage - I had that happen to me. You were probably just having some good days, just as you thought. During the healing process, we will occasionally have "bad" episodes, now and then, but they become fewer and fewer, as the healing progresses.

Incidentally, if Imodium stops working for you, most people find that they can use Lomitil, and get good results. The two are similar drugs, but when one stops being effective, the other will usually still work. You're right, though, they don't "fix" the problem, they just temporarily "cover it up".

Your mum was right - we've got some really impressive technology available these days, but when it comes to treating our ills, medicine seems to still be trying to work it's way out of the stone age.

Tex

[Gayle]

Hi Maxine,

I had my CT scan on Monday - not too bad except for the heart racing and the nasty taste. My GI will have the results next week.

Does this mean you will then have a Dr's appointment for the final answer here? Hope so for your sake!

It is rather difficult to understand how a person can be "put on hold", so to speak, for so long, without getting on to implementing a treatment plan, when they already do know what is going on.

This is unfortunately the big problem with Canadian style Health Care. It is not that the knowledge is not there. It definitly is! But that the system is so inefficient in the way it works. Gggrrrr.

Gosh, I know folks in Canada through my dog group, and Veterinary care there for their dogs is certainly comparable to anything here in the USA, and they don't seem to experience these kind of care/treatment stalls?? And to think folks in the USA are lobbying for such a system. Makes you wonder doesn’t it?

A good question on the QUESTION LIST you should be building for this Dr. is about the Imodium, what your experience was and so forth. See what his/her opinion is regarding your experience.

Gayle’s rule is: Never go to this GI Doc without a written list of QUESTIONS, as well as a written summary of all medications you are taking.

I just got a scheduling reminder from the GI I see in AZ when we return there this fall. My Q. list is already considerable, so I'll probably have to edit it some. I do know that he doesn't have forever for a comprehensive lecture on IBD.

Best,
Gayle

[teagirl]

Yes, Gayle, next week is my results meeting with the GI when he'll tell me officially what I have and what he wants to do about it. I've now started a list of things to tell him and ask him. One q is does he have other patients with MC. It'll be interesting to hear the answer.

Please don't judge Cdn healthcare too harshly! If you are seriously ill, it is pretty good and immediate care is given. They were wonderful with my MIL, and my family and friends have no serious complaints. It's the ordinary stuff, the non-urgent that can take time, eg waiting time for a CT scan is officially 42 days unless you're urgent. I wasn't urgent so it was 35 days originally until I kicked up a fuss. There's been a big campaign in the US using Cdn patients complaining they weren't treated well under the Cdn system. It wouldn't be fair to judge the system by those ads. There's quite a bit of debate about whether or not the stories are entirely accurate. Sure, the system isn't perfect but it isn't bad either. Sometimes it's only as good as the doctor you get, and some of those need a good shake.

We do need to be more efficient, get more doctors out into the boonies, and cut waiting times for elective surgery. We need more MRI and CT machines. We need more nurses. And we need more healthcare folks who give a damn. And fewer bureaucrats.

Of course I am only speaking for Ontario, the only services I have experience of. Might be better or worse elsewhere in the country.

My problems with the system is more about D being seen as a small problem that can wait. That's when we see the less good side of Cdn healthcare - not urgent? get in line.
regards

[Gayle]

Hi Maxine,

next week is my results meeting with the GI

This is good news. :)

As MC is not a rare condition, I would bet that this GI, (and here I am assuming he/she is an active full time and Board Certified in the specialty), has several MC patients. MC is not new. It was first described in medical literature in about 1975. It is seen described in professional seminar programs in ways such as “an orphan disease” or an “atypical IBD”. Whatever exactly those descriptions mean? Of course the more common conditions of Ulcerative Colitis and Chrons Disease are much better known and get more press and attention – but they are really not much better understood. You will likely find this all quite interesting.

Please don't judge Cdn healthcare too harshly!

My reference to the Canadian Health Care System is not related to the “press” in the States on that subject -- all of which begins with some grain of truth, is then hyperbolized to a grand extent, is further word-smithed, and is never vetted for truth. Such silly stuff.

Instead, my references are my Canadian neighbors and friends where we all spend the winter months in AZ. They are MOST interesting on their views on the systems – both sides of the border. To a person, they are happy with the Canadian system and think that the system (nonsystem) in the states is “loony”. And they have some good points there. One of my almost daily dog walking buddies is in fact from London, Ontario. And WE "chew the rag" on all kinds of stuff like this several times a week while getting our exercise and daily dose of sunshine.

But what must be understood about all these folks is that they are also very analytical with regard to risk/reward of health insurance coverage. They do not choose to purchase insurance for their time in the states. Instead they decide to “self-insure” by setting aside a generous amount of money to use for such a purpose if the need presents. If they have to seek medical care, they are prepared to pay cash – and further more -- think that is the right way, and in the long run the most cost effective way, of managing their health care needs. They tend to have a better understanding of the concept of risk, and are not nearly as “risk-aversive” as the average person in the States is.

And of course, if necessary, and or prudent, they can return home to Canada for extensive care. So it is all very interesting. There are no “right” answers. One of my friends commented last winter about some elective surgery scheduled for the following August. He saw no reason to think this wasn’t just fine. Most Americans are not prepared for extensive waiting for much of anything in this regard. We Americans are a whole different can of worms in this regard.

We do need to be more efficient, get more doctors out into the boonies, and cut waiting times

Distribution of medical services is a large dilemma everywhere. That’s a whole other subject -- maybe for another day. Yep, I was employed in the industry -- 35 years.

My Best,
Gayle
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[teagirl]

Hi Gayle, that's very interesting that your f&n self-insure. I've always taken health insurance out when I visit the USA, just in case. As someone who's retired and on a fixed income, I don't want unexpected health problems to make major inroads into savings I've put aside to see me through my golden years.

I have 2 questions:

• How do they know how much to set aside? Is there somewhere that lists what various things cost? Do charges differ from state to state? Are things covered in one state that aren't in another?

• Do any of these people have health problems requiring regular tests or checkups etc? Or are they all, luckily, healthy? I'm wondering how much the desire to self insure is tied to the level of health of the individual.

OK I lied, it's more than 2 questions!

cheers

[Gayle]

Hi Maxine,

I'm wondering how much the desire to self insure is tied to the level of health of the individual.

I would say that as a group they are relatively healthy active seniors. Their chronic type, age related issues, (nearly everyone has something) like high BP of course can be managed from home, including their meds. If something serious is encountered, the Canadian Govt. will transport their citizens back home for the medical care they need. ((Were you aware of this?))

As an example: One of our neighbors suffered a heart attack a couple years ago. Emergency care was given in AZ, his condition was stabilized, and then he was transported back home (in his case, to Manitoba). The rule which then seems to apply, is that if the person is transported home by the Govt. for medical need, they are obligated to remain in Canada for care for the next 12 months -- as they will not be transported again within that time frame.

How do they know how much to set aside?

I’ve never gotten into the specifics of that, -- perhaps a little personal?. They come at the subject from a purely analytical business perspective by comparing what a certain type of Insurance will cost them per month – times -- the number of months they would have this coverage (usually 6 months). Then they consider how much this insurance coverage will cost cumulatively over a period of say 5 years, and then consider that -- against the small (but YES, always present) likelihood of large out of pocket expenses. (Remember, they do have to option of returning home for care.)

If they purchased the insurance, X amount of money would be gone for paying the premiums whether insurance is needed or not. If cash is set aside to cover certain needs, and is not spent, they still have their cash (which has earned a little interest along the way). This is basically how they figure their hedge, and that is their slant.

Is there somewhere that lists what various things cost? Do charges differ from state to state? Are things covered in one state that aren't in another?

Things vary from Institution to Institution, from Drs office to Drs office. This is one of the big issues here now as they are trying to find ways to make these charges more “transparent” so that people can make a cost comparison to assist with their choices. There is not much in the way of meaningful “transparency” available currently. Then too, insurance coverage differs. That’s a big subject, and very important to understand for Americans trying to divide their time in different places. Health insurance is a State regulated business in the USA, which is another issue they are looking at changing. As a resident of one state, you can not currently shop for insurance across state lines -- which effectivly does limit competition.

To illustrate: I have another neighbor, from Seattle, that has a long and unusual cardiac history. Their covereage is good in Seattle, but limits where she can be seen. For her specific needs while in AZ, she would be best off at Mayo Scottsdale, and would get more comprehensive coordinated care in that type setting -- and ultimatly – for less cost. But they don’t have health insurance that will allow for this. They didn’t consider this when they bought the property in AZ and/or selected they type of insurance they have. Simply put, they need to sell in AZ and remain in Seattle. Too bad, -- they are nice neighbors.

Hope I have been able to answer your questions,
Gayle