path to take?

[shona]

Thanks guys.

Thanks for the references Tex, I'll save them along with my others.

Already signed up with alldaychemist yesterday thanks to the info on this forum :) I will talk to my mum about whether she is willing to take the drug if she still needs something at the end of the 2 months. She knows she has been royally screwed by the health care system but I suspect she would be nervous about taking a drug that a doctor refused to give her. The drugs might not get through our customs either, but I won't go into any more detail in case I decide to try it

I'm torn between forwarding all these references to her current GI and continuing to fight him until he agrees to the Entocort (if she needs it after December) or just giving him the flick and getting her an appointment with a new GI in my city when she visits me in January (there are dozens of them here and I would ring around to find one who is up to date on their CC knowledge first).

I have no idea why he is so hesitant to prescribe the Entocort, he is not paying for anything, and has already profited from her quite a bit (each appointment = $90, the 1 colonoscopy she had with him cost around $2000) as he is the only gastro doc in town and is a private specialist - not sure how it works overseas but here we have some specialists who are "public" (so the health system pays the whole bill) and some are "private" (patient pays the bill and gets a portion back from health system). Unfortunately in small towns, there are often only 1 of each type of specialist and they decide to make themselves "private".

When I rang his office a few weeks ago ready to get into debate with him, I made it very clear in my message that the money was not an issue, and he obviously understood this as mum said at the appointment last Monday he was *almost* apologetic for assuming she couldn't afford it.

She also said he was very surprised that she knew about long term effects of pred (osteoporosis, etc) so I honestly think he isnt used to patients being anything but sheep and it has become a power battle now about "who knows best".

[Gabes-Apg]

Shona
good for you!

we have said it many times on this forum, a key to successful management of MC is that we have to self manage, ie do our research, make decisions about diet and meds that suit us, and push the doctors to support us in our decision and not just follow what the latest drug rep has told them!

you are on the home stretch! hang in there

[tex]

Shona,

Of course, not being a medical professional, it's easy for me to second guess a doctors motives, but doctors who are "afraid" to prescribe Entocort, while "gleefully" writing out a script for prednisolone, have to fall into one of two categories:

1. Either they are poorly informed about one or both of the drugs, or,

2. They have some sort of agenda, unrelated to the drugs themselves.

IMO, if your mother is unwilling to take Entocort because of misguided advice by her current GI specialist, then it would be to her advantage, (as far as her long-term health is concerned), to switch to a specialist that you select, in your city of residence. I realize that amounts to a lot of extra work for you, but hopefully, once her symptoms are resolved, it won't be necessary for her to see a GI but about once every 5 years, (for cancer screenings), in the future.

If your mother is not comfortable with her treatment, she may never be happy with it, and no one needs any additional stress, especially if they have CC. Anyway, that's my 2 cents worth. The bottom line is, you and your mother have to decide what is best for her, regardless of what we may suggest.

Whatever you decide to do, we are with you 100%.



Tex

[shona]

Hope everyone has been well.

Another update (thanks for listening )

The Enterolab test results came back today:

Gluten Sensitivity Stool Test
Fecal Anti-gliadin IgA 158 Units (Normal Range is less than 10 Units)

Cow's Milk Protein Sensitivity Stool Test
Fecal Anti-casein (cow’s milk) IgA 67 Units (Normal Range is less than 10 Units)

Soy Sensitivity Stool Test
Fecal Anti-soy IgA 27 Units (Normal Range is less than 10 Units)


My mum is still doing well on the pred, currently down to 10mg. She says it makes her jittery & giggle a lot but is more than happy to put up with those symptoms over chronic D!

As for getting the Entocort script, I've rung every GI in my city (about 30 of them) and no-one has an appointment available during the 2 weeks she will be here in January.

One was very helpful and forwarded a list of GIs within driving distance (2 hrs) from mum's place, that he would recommend as being more up-to-date than the average GI. I've rung a few of them and found one that has prescribed Entocort on previous occasions which is a good start!

Interestingly, the receptionist told me they have quite a few patients from mum's town so I wonder how many people are in her same situation with this single GI in her town not helping.

So we're going to organise a referral and appointment for late January.

Hopefully starting the GF/CF/SF diet now will help the healing and when she finishes the pred in late December, the symptoms won't come back - I'll be very happy if we end up canceling the January appointment and never needing the Entocort.

[tex]

Shona,

That definitely answers the questions about whether or not she has any food sensitivities. I don't know if her intestines will be healed enough for the diet to completely control her symptoms when she weans off the prednisone, but it may be beginning to help, by then.

Thanks for the update. Do you mind if I add those results to our database here?

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

Tex

[shona]

I'm hopeful but know at the back of my mind that the Entocort will almost definitely be needed.

Yes of course, please add them in

[shona]

hi guys,

Hope you have all been well.

It has been a few months since I last posted an update about my mum. In Nov & Dec she was on prednisone, which did help alot with the BM but also made her jittery & mess with her emotions (and obviously she couldn't stay on it long term anyway)

December she went to her GP to get a referral to the GI who is 2 hours drive from her - this way we could book an appointment for February ready for when the pred course was finished and she was home from visiting me. She walks into the appointment to find her regular GP is away on holiday and they have a policy that only your regular GP can organise second opinions to specialists!

So all those plans went out the window. She got an appointment with her regular GP a few weeks ago (March) and he has organised the second opinion referral. We've booked the next available appointment with the GI (31-May).

This GI has prescribed Entocort before so I am hopeful he won't put up any silly arguments about it's cost or it being "illegal" to prescribe like the last GI did. I've printed out a few of the budesonide/CC studies for her to take along in case he needs convincing.

She has also started slowly getting rid of gluten from her diet - I think the last couple of months have been exhausting and not ideal for a big change like going onto a GF diet, but yesterday she stopped eating weetbix (breakfast cereal made entirely from wheat) so that is a good step in the right direction! I know it will be a long road ahead to completely eliminate it.

Thanks for listening,
shona

[tex]

Hi Shona,

Given that most of us don't schedule an appointment with a doctor unless we are in pain, or have an urgent need for medical advice, it does seem odd that so many appointment schedules totally ignore the urgency issue. It's almost as if doctors think we are scheduling appointments with them just so we can spend a little time casually chatting with them, about nothing in particular. I'm glad that you finally got an appointment scheduled. It's a shame that it's so far in the future, of course.

It's also a shame that your mother is so slow to adopt the necessary diet changes to eliminate her symptoms. Convincing parents, (or any loved ones, for that matter), to change their diet, is usually a frustrating and difficult chore. At least she's making progress. Hopefully, she will see some improvement from the diet changes, which will prompt her to become more serious about paying attention to her diet, and if she does that, she should see much more improvement in the future.

I hope the appointment goes well, and the Entocort works well for her. Many people with MC are able to control their symptoms reasonably well with Entocort, even if they are not careful with their diet. Please keep us informed.

Thanks for the update,
Tex

[shona]

hi guys,

Hope you are all doing well on your path to good health

The latest from my mum -

She had her 2nd opinion this week. He didn't want to give her Entocort as he was concerned about the risk of osteoporosis. He apparently said that what she has now isn't going to kill her, but he wasn't keen on giving her a drug which although it may cure her, might also give her a serious problem like needing a hip replacement.

I see now what you all mean about GIs generally thinking this is a "nuisance disease" and not understanding how it is completely debilitating.

He thinks she may have dog hookworm due to the fact that her white blood cell count is elevated and she walks barefoot on her local beach.

Here's a basic summary of dog hookworm from Qld, Australia museum website

So she's been prescribed Mebendazole tablets (3 tablets daily from 3 days) to get rid of the hookworm and Gastro Stop (Loperamide) 2 x 2mg tablets per day - I think she may have been on Gastrostop in the past (which helped for a week or two then didn't help) but she has no record of it in her files.

Little bit disheartened, but I'm trying to be supportive & not vent my frustration at his decisions onto her for the next couple of weeks to see if these 2 drugs do anything

Wonder what he will want to try next if these 2 don't work.

[Gloria]

Hi Shona,

If your mom's GI won't prescribe Entocort, you may want to look into ordering it from India. Several members here have done that, and it's not very expensive.

Gloria

[Zizzle]

Your link about the dog hookwork is fascinating. Imagine if that's all this was? I wish deworming was the answer for the rest of us.

[tex]

Shona,

Do those jokers actually have a license to practice medicine? Your very first post in this thread states that your mother was diagnosed with CC. It is impossible to misinterpret the markers of dog hookworm as CC, and vice versa. Therefore, your mother does indeed have CC.

An elevated white cell count is not that uncommon with MC. The big question is, "Is her eosinophil count elevated, or just her general white cell count?" My eosinophil count is occasionally elevated, and I certainly don't have dog hookworm, so even if her eosinophil count is elevated, it can be attributed to other causes. Common causes of increased eosinophil levels include: infections, parasitic infestations, asthma and allergies, food sensitivities, respiratory diseases, cytokine infusions, vasculitides, non-hematological malignant diseases, drug reactions, and connective tissue diseases, and there are others. FYI, connective tissue diseases include systemic lupus erythematosus, rheumatoid arthritis, scleroderma, polymyositis, and dermatomyositis. Note that, (from Wikipedia),

Connective tissue is any type of biological tissue with an extensive extracellular matrix that supports, binds together, and protects organs. These tissues form a framework, or matrix, for the body, and are composed of two major structural protein molecules: collagen and elastin.

Guess how collagenous colitis got it's name - it is named that way because it causes thickening of the collagen bands in the lamina propria of the epithelium of the colon. The collagen bands in the lamina propria of the colon constitute connective tissue. That means that technically, CC is a connective tissue disease. Therefore, I'll bet a GF cookie that collagenous colitis can cause elevated eosinophil counts.

It sounds as if he's grasping at straws. If her eosinophil count is not elevated, then he has no excuse for treating her for dog hookworm. Apparently, he is a rather odd bird, to come up with such a weird excuse for not treating the disease that she's been diagnosed with.

I don't see anything in the description at the link you posted that mentions diarrhea as a symptom of dog hookworm. In fact, based on the human response to helminths in general, dog hookworms would almost certainly put CC into remission, for anyone who has CC. More than that, hookworms will stop virtually any autoimmune reaction, including the other inflammatory bowel disesases, such as Crohn's and ulcerative colitis. That is an indisputable fact, based on extensive research with helminths as a proposed treatment for IBDs. If you need a link to verify what I'm saying, here's one, and there are many other articles written about research involving pig whipworm, hookworm, etc.

http://opensourcehelminththerapy.org/me ... thesis.pdf

Therefore, if she still has the symptoms of CC, that proves that she could not have a dog hookworm infection. It appears that her doctor is unqualified for treating CC, because his working knowledge is out of date, and woefully inadequate. I'm no doctor, but the facts seem pretty clear, to me. This is not rocket science.

Tex

[Zizzle]

It sounds like she needs to keep walking barefoot on the beach!!

[Gabes-Apg]

Shona (Gloria)

be wary of ordering endocort from India. Australian customs will confiscate and fine recipients for drugs/medications ordered from overseas. They target packages that are sent from India.

Australian customs have tracking systems where they will monitor repeat packages to addressee's


News Report from May 2011

Figures obtained by The Courier-Mail show Customs stopped 288 packages containing counterfeit drugs in the 12 months to April up from 43 packages for the same period the year before.

In the past three years Customs has sent three packages a week to the Therapeutic Goods Administration for investigation.

Small quantities for personal use usually result in a warning. But large-scale importers risk up to seven years' jail and $550,000 in fines.

[tex]

That's one of the reasons why I always recommend ordering from Cyprus.

The Customs policy is pretty much the same here in the U. S. Businesses that order illegal drugs are fined, but small quantities for personal use are typically ignored, and allowed to reach their destination. Small quantities are usually considered to be anything less than a 3 month supply.

Tex