Salofalk information

[Adelaide]

Hi, it is so good to find this website! I was diagnosed with Lymphocytic colitis about a month ago. I have had ongoing GI symptoms for the past 4 years. I am currently reading Wayne's book which is great. My GI doc told me that this disease cannot be helped by diet but in reading Wayne's book and some of the comments here it appears that many people are finding that diet is beneficial. Firstly my GI doctor put me on Questran but I had no improvement so after about 10 days he switched me to Salofalk (Mesalazine). Currently I am taking 2 grams a day but have had no improvement. He said after 2 weeks to increase to 3 grams a day if no improvement. Has anyone had any experience on how long it would take to see any improvement in symptoms on this medication? I also read that one of the side effects of this medication can be hair loss. Can anyone tell me if hair grows back when stopping the medication if this should happen?

[tex]

Hi Adelaide,

Welcome to our Internet family. It's difficult to predict response times to any anti-inflammatory medication, because we all tend to have different responses rates to various drugs. Mesalamine is not effective for everyone, but if it's going to help, improvements will typically be noticed somewhere in the range of from 2 to 6 weeks. A few respond sooner, and some take longer, but most patients respond within that range, if the drug is effective for them.

Hair loss does sometimes occur because of anti-inflammatory medications, but in most cases the problem will be reversed after using the drug is discontinued.

Unfortunately physicians are trained to treat health issues with drugs, and their training typically includes only the most rudimentary introduction to diet and nutrition, with no information on how to treat health issues with diet changes (other than celiac disease). So drugs are the only treatments that they understand. Anti-inflammatory drugs can suppress inflammation, but they cannot prevent it from being regenerated. The only way to stop inflammation from being generated is to stop eating the foods that cause our immune system to produce antibodies to them.

When the genes that predispose to MC/LC/CC are triggered, the genes that predispose to gluten sensitivity are also triggered. Gluten sensitivity causes increased intestinal permeability (leaky gut), and this opens the door to the development of additional food sensitivities as our immune system discovers partially-digested food peptides in our bloodstream that shouldn't be there. And unfortunately doctors have no blood test that will reliably detect the type of gluten sensitivity that we have with MC. So they incorrectly assume that we are not sensitive to gluten (because they have no way to detect it), even though virtually every one of us is indeed sensitive to gluten.. And that's why doctors don't understand that diet is the key to preventing the inflammation that causes MC/LC/CC.

Only stool tests designed to detect IgA antibodies in stool can reliably detect the food sensitivities that are associated with this disease, and there is only one lab in the world that offers those tests. It's located in Dallas, Texas, USA

Again, welcome aboard, and please feel free to ask anything.

Tex

[Adelaide]

Thank you so much Tex. Your reply is so helpful. I notice that I react somewhat to dairy depending on what type of dairy but it sounds like the reaction to gluten goes on silently inside doing its damage. I have given up gluten and dairy before but I don't think it has been for long enough to give a chance for healing. Thanks again for your reply and for your warm welcome. And for writing your book

[Gabes-Apg]

welcome adelaide

are you Adelaide based?

My GI prescribed questran when I was first diagnosed, and I also found this forum and read all about diet etc

at the same time I started Gluten Free, Dairy Free, low fibre (well cooked), low amount of ingredients eating plan, via this I also figured out that I reacted to soy and yeast and came up with my safe eating plan
with the right eating plan within weeks I was reducing the dose of the questran and within a few months was able to stop it completely.

Tex mentioned the USA based tests to determine intolerance, at the time of diagnosis i did not have the money to do that testing so using the information here - the items that affected most people and elimination diet principles I was able to figure out my safe eating plan.

I have been using diet as the main management tool for the past 5.5 years...

as you are a newbie you may not be able to use the search function to find previous discussions about the mesalazine
here are some links to previous discussions that may be helpful to you

http://www.perskyfarms.com/phpBB2/viewt ... mesalazine
http://www.perskyfarms.com/phpBB2/viewt ... mesalazine

http://www.perskyfarms.com/phpBB2/viewt ... mesalazine
http://www.perskyfarms.com/phpBB2/viewt ... mesalazine


once you do a few more posts (feel free to ask questions!) then you will be able to search any keyword (like a google search)

hope this helps

[Adelaide]

Hi Gabes

Thank you for your reply. It was really helpful to read those discussions and it was so good to read your journey. Yes I am based in Adelaide. My name is actually Linda. I went to add Linda as my username but of course it was taken so I just put Adelaide.

I am willing to take the medication in the short term but I hate medications and so I am looking for some long term solutions to this and it looks like diet is it. And so my journey begins (again).

Does Budesonide come under the same name here in Australia? I wonder if Budesonide is on the PBS. I think I remember reading that it can be expensive so it probably isn't.

It is interesting to read that fibre should be well cooked. I was eating a nice big salad everyday for lunch for a long time and experiencing stomach cramps. It is only when I cut out the salad that the stomach cramps stopped.

Thanks again for your reply Gabes. This site is great

Linda (based in Adelaide )

[Gabes-Apg]

Hi Linda
hope you were not near the recent bush fires in Adelaide. I am hunter valley based now, (yep... got flooded in last week)

prior to my MC diagnosis i lived on raw vege salads, fruit, and use to snack on raw carrots, snow peas and beans!
the combo of the fibre and link to soy there is no way I could even think of having them now!

Re Budesonide the budesonide spray is covered by PBS - I dont believe slow release tablet form used by MC'ers is on PBS (just had a look)
the other med that helped a few here is Uceris but again this is not available on the PBS
Not sure if Budesonide is available via approvals system and cost is discounted

given our strict custom rules, I am not aware if anyone Aus based, has successfully purchased the items from overseas (India) to minimise cost

The quickest way to reduce/stop the D is to start a low inflammation, bland, low amount of ingredients eating plan.
what i do is make home made bone broth (mine is lamb shanks and chicken feet etc) and make soups and stews based on this.
I cook my safe veges in this.
Gluten Free, Dairy Free, I would encourage Soy Free (based on that over 50% here react to soy) avoid eggs for now until you can test if they work for you
in my case i react worse to soy than gluten so avoid it at all costs!!
Bland being i only use himalyan salt. no herbs, no pepper

this can be 'tough' to do in the Aussie summer to be eating hot food, but it is what works best...
my safe veges are cauliflower, carrot, sweet potato, white potato, parsnips.
My sometimes veges now that there has been healing is sauteed baby spinich, sauteed baby asparagus, cooked onions, avocado
I only have processed gluten free products 1-2 times a week as any more than this i start to react

Breaky is reheated vegetables with safe protein
snack is rice protein shake
lunch is veges and safe protein or stew/soup
dinner is soup/stew or veges and safe proteins or rice protein (if it is hot day and I dont want hot meal)

as you may have read in some of the posts - Vit D3 is essential for reducing inflammation and healing..
if budget allows I recommend the bioceutical Vit D3 drops (Lingual, easily absorbed)

if you do the diet adjustments, it might worth trying the questran again -

my journey is not typical - there are many here that in a short time of the bland diet and with Vit D etc have good healing and progress and can start adding in ingredients.. still low fibre, but they can increase variety and tastes etc

[Adelaide]

Hi Gabes, thankfully I was not near the recent bushfires. It has been crazy with fires in some parts of the country and floods in other parts. We could do with a bit of rain. I am forgetting what rain looks like.

Thanks for the great advice. I have made bone broth with chicken but lamb shanks sound great. Also I have never tried a protein shake before but I get tired of trying to figure out what to have for lunch so that sounds a good idea. Do you buy it from health stores and have you any advice on brands?

I am already taking the bioceuticals vitamin d drops, so that is good. I have been seeing an integrative doctor but not really getting anywhere. He has been saying things like, 'There is something we are not seeing here. I wonder if you have Crohns? Are you sure you don't have an IBD?' Now when I go back to him I can let him know the results of the colonoscopy (biopsy). He is the one who put me on vitamin D. He also has me on zinc. Do you know if that is something that is helpful with MC?

Thanks again for sharing with me.
Linda

[Gabes-Apg]

One thing that i have learnt via my own journey and the experience of many here. MC is not the same as other IBD's.
the inflammation reactions are quite unique. the protocols that many practitioners (accupuncture/naturopath/ etc) use for other IBD's dont work for MC.

when we are inflamed the safest supplement options are vit D3 and magnesium.
Zinc is good for multitude of reasons, but i would not do high dose and/or long term supplementation unless you have had copper levels checked (serum blood test)

Once the gut has settled down and there has been some healing, many here have benefited from supplementing with some of the B vitamins, the active forms provide far better results.
beyond this, it can be very individual as it depends on if you have other health issues, or what other nutritional imbalances you may have, what lifestyle exposures you have had (good or bad water, live near power station or gold/copper mines, live in highly populated city, live in house with mould etc etc etc)
i have used things like hair mineral testing to get an indicator of any excess metals, and what the mineral balance is etc.

I buy Ezyprotein - it is rice based - you can buy it direct from the manufacturer.
http://www.ezyprotein.com.au/ they are really prompt, if i order on the weekend, i normally have it by Wednesday for you in Adelaide you would probably get it by Thursday/Friday.
I flavour it with a bit of raw cacoa, coconut sugar and drink it with half rice milk/half coconut water.
yes it gets a bit gritty, if you shake it well before drinking (and inbetween sips give it a shake) it works fine.
$70 sounds like a lot but it works out about $2.50 per serve, still way cheaper than buying a sandwich!

What i do is put hot water in the container, then put the protein powder, the sugar, cacoa, mix it up and then put these in the fridge. When I want one, I then add the coconut water/rice milk.
Handy to set a few up in the fridge and you always have a quick meal or something to take with you if you are going out for a while.

other options for lunch are;
cold pre cooked meat, (i frequently carry small container of cooked meat like chicken or lamb as a protein snack)
if you can handle eggs make a fritata/quiche thing with pre cooked safe veges and protein.
paleo savory muffins (use coconut flour)

I tend to do extra cooking on the weekends so I have most of my meals for the week sorted.

[Adelaide]

Thanks for that Gabes. You sound so organised. Hopefully I will get myself together and become organised too

[Gabes-Apg]

bit of organisation means way less stress.

stress can be a major trigger for many here.