My colitis journey has begun

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

You're very welcome. Retirement is an interesting period in life. Since it allows time to do many of the things that we have always wished we had more time to do, if we're not careful, we end up busier than ever. But that's a good thing, because research shows that staying busy is not only the key to longevity, but to improved health and better quality of life.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
HappyBird
Gentoo Penguin
Gentoo Penguin
Posts: 305
Joined: Thu Sep 17, 2015 4:22 pm

Post by HappyBird »

tex wrote:You're very welcome. Retirement is an interesting period in life. Since it allows time to do many of the things that we have always wished we had more time to do, if we're not careful, we end up busier than ever. But that's a good thing, because research shows that staying busy is not only the key to longevity, but to improved health and better quality of life.

Tex
You are so right Tex..........

I retired early after four decades of hard work in order to study and do things I wished I could fit into my long working days. I was fortunate to be able to do this at a time when some of the wheels fell off in my life. My psoriatic arthritis was diagnosed in this period and now the MC. Non of the above stopped me studying and persuing my interests. I guess my life has remained busy and that suits me - I'm not the retiring type!

:lol:
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
sonja
Adélie Penguin
Adélie Penguin
Posts: 216
Joined: Sat Oct 20, 2012 9:53 am

Post by sonja »

Dag Rolf,

Welkom bij onze internetfamilie. Je hebt al heel veel informatie gekregen en ik kan me voorstellen dat je je enigszins overspoeld voelt!
Maar dit is volgens mij echt de enige plek waar je goede informatie en adviezen kunt krijgen.
Ik heb er heel veel aan gehad, met name Tex is een expert.
Ik heb lymfocytaire colitis sinds 5 jaar. Eerst jaren lang medicatie gebruikt (Entocort /Budesonide), wat aanvankelijk goed hielp, maar mijn weerstand heel erg ondermijnde.
Sinds een jaar leef ik zonder medicatie en glutenvrij. Sinds maart ook caseine en sojavrij. Ik heb mijn intoleranties ontdekt via het eliminatie-dieet. Kan ik je echt aanraden!
Op dit forum is men het er over eens dat je de beste mogelijkheid hebt om van je diarree (en andere symptomen) af te komen door het volgen van een dieet. Je moet zelf uitvinden wat jouw dieet is. Sinds ik mijn dieet volg, gaat het steeds beter en nu gaat het al maanden lang heel goed met mijn darmen.
Ik heb ook geëxperimenteerd met geiten- en schapenkaas; ik kan het veel beter verdragen dan koemelkprodukten, maar ik krijg er ook klachten van (momenteel vooral gewrichtsklachten).
Misschien mag ik niet in het Nederlands communiceren, maar dat is wel zo gemakkelijk!
Als je nog iets wil weten, misschien mbt tot Nederlandse dingen, hoor ik het graag.
Sterkte en succes,
Sonja
sonja
Adélie Penguin
Adélie Penguin
Posts: 216
Joined: Sat Oct 20, 2012 9:53 am

Post by sonja »

Hi all,

Sorry for my post in Dutch. It was really so nice to communicate in my own language about my MC, but it was thoughtless and will not happen again.

:???:
The most important message was: this forum is so helpfull!

Sonja
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Sonja,

That's not a problem. Post all you want in any language you choose. Most of us just wish that we had the ability to communicate in alternate languages.

We appreciate you posting.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
sonja
Adélie Penguin
Adélie Penguin
Posts: 216
Joined: Sat Oct 20, 2012 9:53 am

Post by sonja »

Thank you very much, Tex. You are really very kind and empathic.

Sonja
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Sonja
'Go For it'

I think it is wonderful that people can link up and be themselves, which is one of the strong foundations of this forum.

health systems, protocols, products etc are different in every country, some of what is discussed here does not apply to all members if they are from another country.

as all of us have learnt, it takes a village...
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Hi Sonja,

It can be very difficult for some folks to log into our forum in their non native language. Thank you for your support. This is a tough and isolating disease
early on. Anything we can do to help folks out..............

Gabes said
health systems, protocols, products etc are different in every country, some of what is discussed here does not apply to all members if they are from another country.

as all of us have learnt, it takes a village...
Very true, Gabes.
koksvik

Post by koksvik »

In an earlier post I asked if there was any connection between MC and Spiriva. Tex pointed me to an FDA report that classified Spiriva as the prime suspect in causing MC in one particular patient. I e-mailed that information to my GP, but I do not expect to get a response. Sadly my GP goes on the defensive when he comes across a patient who understands a thing or two about medicine and dares to ask (im)pertinent questions.

Then on Friday the postman brought me Tex's book and the passage on page 36 clinched it for me:
Experience shows that sudden onset of diarrhea is often associated with drug induced microscopic colitis, that we know can often be resolved simply by discontinuing use of the drug that caused the inflammation.
As of today I have stopped using Spiriva to see what will happen to the MC. It is a shame, because the Spiriva helps a lot with my breathing so I shall have to manage with Berodual instead.

I shall keep you posted.

Rolf
Lilja
Rockhopper Penguin
Rockhopper Penguin
Posts: 921
Joined: Mon Aug 25, 2014 6:19 am
Location: Oslo

Post by Lilja »

koksvik wrote:In an earlier post I asked if there was any connection between MC and Spiriva. Tex pointed me to an FDA report that classified Spiriva as the prime suspect in causing MC in one particular patient. I e-mailed that information to my GP, but I do not expect to get a response. Sadly my GP goes on the defensive when he comes across a patient who understands a thing or two about medicine and dares to ask (im)pertinent questions.

Then on Friday the postman brought me Tex's book and the passage on page 36 clinched it for me:
Experience shows that sudden onset of diarrhea is often associated with drug induced microscopic colitis, that we know can often be resolved simply by discontinuing use of the drug that caused the inflammation.
As of today I have stopped using Spiriva to see what will happen to the MC. It is a shame, because the Spiriva helps a lot with my breathing so I shall have to manage with Berodual instead.

I shall keep you posted.


Rolf
Rolf,

Tex has an interesting post regarding breathing, where he discovered that the problems with breathing resolved as soon as he upped his magnesium intake.

Hopefully, Tex will read this and find the old post for you.

Hilsen
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Hi Rolf,

Please remember that Spiriva is a relatively new medication, so not much patient history has been documented at this point. That means that we don't know if Spiriva actually carries a significant risk of triggering MC, or if the particular case that was mentioned was a rarity. Time will tell. The problem is that discontinuing the use of a drug that triggers MC doesn't always resolve MC in many cases, especially if the disease has been active for a significant length of time. If the inflammation causes leaky gut, then we eventually develop food sensitivities, and they tend to be permanent.

Discontinuing the treatment is worth a try though, because you should know relatively soon whether or not it will bring relief from MC symptoms. In most cases when a medication is the cause of the MC, the symptoms should fade away within a few days after the drug clears the body.

Regarding the post that Lilja mentioned, I do not have COPD (if that is the reason why you were taking Spiriva). For someone who has COPD, a magnesium deficiency would very likely make the problem much worse, but resolving a magnesium deficiency will probably not resolve all of the COPD issues. I believe that this is the post that Lilja referred to:

Even ER Docs Don't Recognize The Importance Of Magnesium

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
koksvik

Post by koksvik »

Hi Tex,
Yes, COPD is the reason for having been prescribed Spiriva and that is no surprise after 50 years of smoking. My wife has been prescribed Seretide for the same symptoms, but she has not been diagnosed with COPD. This is another of those stories where doctors keep you in the dark about their actions. I believe it is because half the time they don't really know what they are doing. In our case I believe they are experimenting with us to gain some information about these new drugs for the benefit of the drugs companies. I would not be surprised if they get a kick-back for doing this, but I cannot prove that, so I have to watch what I say. And I believe our pharmacy is in the same boat. Call it a conspiracy theory if you like, but there is more between heaven and earth than meets the eye, to (mis)quote Shakespeare.

In my case the information leaflet in the Spiriva package states that it should not be used by people with arrhythmia or prostate problems. I have both, but when I asked my GP why she prescribed it I got no answer. An appointment with my GP is limited to 10 minutes and that is not enough time to nail her to the wall for answers. But I shall not give up.

Rolf
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Rolf,

Yes, many physicians seem to have a habit of ignoring or downplaying the risks involved with the use of prescription medications. And most tend to deny that adverse reactions experienced by patients were due to a drug that they prescribed. And of course these days time limitations reduce the opportunity for in-depth discussions about such details. And doctors probably don't want to scare patients, because that might make them unwilling to even try a drug to see if it might be helpful for controlling their symptoms.

But one of the biggest problems is that most patients have traditionally expected their doctor to write a prescription for a pill that will "cure their ills" so that they can get on with enjoying life with a minimum amount of sacrifice, pain, or effort. The general public has brainwashed their doctor into believing that this is what they want, so their doctor tries to accommodate them. They don't want to change their diet, or their habits, or their lifestyle, or anything else — they want a "magic" pill that will make them well, and they want to be well "right now". Their health may have been deteriorating due to 20 or 30 or more years of poor diet and self-destructive lifestyle habits, but they expect their doctor to write a prescription that will correct all that, quickly and effortlessly.

The biggest difference between me and those people is that although I've been there, done that, my expectations are totally different, and more realistic (IMO). As much as we would love for physicians to be able to perform miracles with our health, that's not likely to happen, when drugs are the primary treatment. The problem now is that many people in the general population are beginning to realize that the drug companies have been taking advantage of them, and it's time for some changes, but the medical community is slow to change. We have to accept responsibility for our own health if we expect to ever improve our health, because the pharmaceutical companies are only in it for the money, and too many doctors are too willing to help them take our money. Medical schools desperately need to drastically change their curriculum so that they can begin training doctors to actually provide "health care", rather than teaching them to prescribe drugs to treat every ailment.

But changes will be slow to come, because far too many people are still willing to believe the drug company ads, so they go to their doctors, requesting a prescription for the latest dangerous drug, hoping it will perform miracles, and knowing that it is ridiculously overpriced (at least that's true in this country).

I can remember when it was illegal to advertise drugs on TV. It was a different world then. Back then, we still believed that our doctor would do whatever was in our best interest when we needed a treatment. And we were right.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
louis

Post by louis »

Well said tex, i agree completly.

And i think alot of people suffer way too much because of the current medical system. Me included for 11 years... until i finally realized that health cant come from any pills, but just from what i should NOT put into my body ( and that actually is medications, pills, drugs, food that caue inflammation)

The search for a magic cure for every illnes has a long history in mankind, but never was a real "cure" found, only symptoms could/can be treated, but in the end its the body thats needs to do the healing, not the pill. Real health comes from healthy nutrition and a good positive lifestyle, alot of sunshine and air etc.

Im on my way to get rid of my psoriasis and colitis issues after 11 years of misery, just with carefully eating and watching my body reaction. No medication whatsoever, and my psoriasis is almost gone. If i have diarrhea, i know i ate something i shouldnt have, and after that i have normal stool again.
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Louis
that is great news that the psoriasis is almost gone, and that your digestion recovers well from dietary mishaps!
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Post Reply

Return to “Main Message Board”