Budesonide Quick Question

[Pebbledash]

Paul and Sue,

Sue, I'm sure you remember Gloria. Paul, here's a 22 page thread by a lady (Gloria) who joined this forum on July 7, 2007 (over 11 years ago). She started the thread as she began to wean off budesonide. But she always relapsed. As far as I'm aware, she's still taking a maintenance dose of budesonide and she has no concerns about osteoporosis. The second link below leads to a thread from December 2017 in which she describes (in the last post in the thread) her budesonide/osteoporosis status. I notice that she last logged in 15 days ago, so she apparently still monitors this discussion board occasionally. If you feel a need to PM her, I'm sure she would be happy to confirm her current situation.

Weaning Off Entocort

How long can you stay on Entocort?

I believe this will allay most of your concerns about taking budesonide as a long-term treatment.

Tex

That's invaluable information, Tex. Will check in with those threads as I get time. Thank you, again, for the clarity and reassurance!

[MamaBeabs]

Hello Tex, I hope I am not the only person on this site that has ever posted repeatedly after receiving a diagnosis. I am at a weak point today, believing that surely my GI doctor or the GI specialist APNP who I have seen over the past 8 months would sit down with me in person and explain Microscopic Colitis, human to human. I could never have been more wrong. No one cares that I had a diagnosis dropped in my lap, a prescription called in and nothing. No words at all, no contact, I can't even get a provider on the phone. I envisioned my new GI doctor to be compassionate as he appeared so to both me and my husband before and after the colonoscopy. No. He could care less that he never explained what I have and what the prognosis is. The specialist I saw before, she doesn't want to see me until after I see the doctor. My visit with him is in November and her in December. It s upsetting and I think I am finally just letting the tears flow. But through the tears I have decided to start writing what I hope will be an insightful expose of the medical world. I cannot sit by while doctors treat patients with complete disregard. I am wondering if you know of anyone in my area, Madison WI who knows about Microscopic Colitis and would share some person to person time with me. This disease is isolating enough. I cannot even explain to my young adults son who live with us what my life will be like, why I am still in yesterday's pajamas at 4pm, or that I may no longer be a full participant in our family life. I have discontinued the Hyoscyamine because it is constipating. I did manage to get out the door this morning for an important photography editing lesson. I managed to write, write, write. But at the end of today, it is just like yesterday. Nobody in the medical community gives two hoots if I know what this illness is and if am doing okay. I am losing faith in humanity. Tomorrow will be a new day. I will be stronger and put my advocacy hat back on. I will learn from this so I can teach others to guard their heart and not to put their well-being, whether health or emotional, into the hands of callous health care "professionals."

[MamaBeabs]

Hi Tex, Today has had its ups and downs. I can't believe I am posting again about doctors. Neither GI providers I have are remotely interested in talking to me about Microscopic Colitis, nor will they call me in person or take a call from me. Nor are their nurses able to inform me in person or over the phone about UW Health's understanding and educating of patients on Microscopic Colitis. They just drop the bomb and walk away. Today I was very frustrated and upset, and called again later in the day. It is my hope that one of them will get in touch with me tomorrow. (I thought I wrote about this on the forum but suppose I didn't click submit since I couldn't find the post.) I think I am losing my faith in humanity. Aren't doctors supposed to be humane? My pharmacist sent me to the Mayo clinic website. There wasn't much on it, but in the list of a dozen medications linked to MC, Ranitidine was there. That is what one of these fine doctors prescribed to me 3 weeks prior to my horrendous symptoms. Yet she doesn't even have the decency to contact me and explain in her words what MC means in terms of my life. It is a terrible thing to feel abandoned by doctors in whom we patients place our trust. That's just how my day has ended up. In my brain fog I ordered the wrong book from Amazon, but I can't afford to buy the first book now. I will have to wait for another week or two. My day began well enough. I was able to get dressed, eat and get out the door to my photography editing lesson. I even wrote a few pages for my book project. After trying to speak with a doctor about my diagnosis, I just crumbled. Tears, finally. I guess it's about time. Sometimes it's okay to be weak. Tomorrow will be better.

[Gabes-Apg]

Welcome!

Vent away, let those tears out. You are not the first and sadly not the last that will have this experience with the current medical system. It is not the doctors fault, they are following the system that has been put in place by the people that pay them.

Any medical professionals that don’t follow the system are alienated and risk losing their qualification status. One of the reasons why good quality functional ‘wholistic’ practitioners are expensive. They are not getting the subsidization that mainstream medicine practitioners receive.

I admire your passion for wanting to spread the word and help others. It is one of the reasons that I try to contribute as much as I can to this group and the new people that join.

I will make the suggestion, put your energies into the things that you can change, or benefit from. For many of us here, it is not that we don’t care – or haven’t experienced the short comings of the current medical system, food chain, big pharma stranglehold etc more so we put our energies into healing and sharing the knowledge with people that are ready and willing to listen.
(does this make sense)

To help your family (and yourself) with acceptance of this journey I offer the following;
Some days are diamonds and some days are stone. We cant eradicate MC BUT with right eating plan, lifestyle choices, support and nurturing it is the playful puppy that with love we learn to live with.

Tag lines like Progress not perfection are key. Listen to your body and live to your limits. Planning and Budgeting energies (as in mental energy, emotional energy, physical energy, adjustments for eating plan for special events / travel etc ) become part of the MC management plan.

Hope this helps

Happy healing - Gabes

[brandy]

All of Tex's (Wayne's books) about Microscopic Colitis are good.

[MamaBeabs]

Gabes-Apg and brandy, Thank you for responding. I will hopefully purchase the first book this weekend. I guess I have read backwards! Thank you for your support, encouragement and suggestions. My bark is worse than my bite when it comes to doctors. I worked closely with many as a hospital chaplain, and some weren't great but some were incredible human beings. This year my experience has been that there just isn't the same empathy with clinical doctors as with hospital doctors. I am coming off of two run ins with our health care system over HIPPA violations which was a solo uphill battle. November will mark my first run in with the "system." Just when I felt relief from intense but successful negotiations, plus a misdiagnosis of sleep apnea, I hit a wall with my digestive health. No wonder after all that stress. I do start out trusting my doctors, but some event always seems to change that. I suppose there are too many patients coming in and going out the doors. I wish I was already where you are in carving out a life with the "playful puppy." Right now it is more of a pit bull. Actually, I like pit bulls. Maybe a dragon. I either get too tired too early if I'm out, home by 2 or 3pm then I'm done for, or I don't get out the door until afternoon if I get out at all. Yesterday was good. I had fun last night sharing spooky photographs with like minded people. The demons we all created with our art was not real, like this disease. I am not sure what the MC management plan is yet. I have read so much and the MC Foundation has loads of info, but I seem to be lacking in the brain retention department, which is very unusual for me, an obsessively organized person who reads about many subjects and absorbs it all. Not so much lately. Differing opinions and no opinions from doctors leaves me confused. At least here everyone seems to agree. That is quite a lot of people. I am grateful for all of you who have had the misfortune of coming before me with MC, as your advice and fortitude is an inspiration. It is so good to be among people who do listen and care. Thank you!

[MamaBeabs]

Hello Tex, Gabes-Apg, brandy, everyone. After being shot down for a one on one with my GI providers yesterday, this morning I sent one final message. It was short, honest, and to the point. I expressed that on a recent visit to our Veterinarian I learned more about my cat's disease than I know about my own illness. I asked if humans don't deserve the same courtesy. I simply signed it, "I'm human." Thirty minutes later I received a call to come in to the office tomorrow morning. Fascinating what a doctor will respond to.

[MamaBeabs]

Hello everyone, Persistently advocating for myself to get a face to face discussion with a doctor has paid off. I know many have said it is better to let this go because it is indeed stressful. But it only took a few days and I hope it is fruitful. It is with the provider who prescribed me Ranitidine. That's really not my point, though. I recently met my new PCP at my new integrative and alternative medicine clinic. I want to share the difference in how the medical personal have responded with COMPASSION:

"Dear Jean,
I wanted to send a quick note and let you know we did get your message and phone calls - I have sent them on to Dr Veach to advise regarding microscopic colitis, and to the schedulers to see about rescheduling your appointment with Dr Sharp (who is not in clinic today).

I am sorry to hear of your new diagnosis - it's very stressful to take in news like that while also adjusting to new medication, trying to educate yourself and plan for the future. It's clear you are working hard to make sense of it all and I know that can feel overwhelming at times. I can see you have sent several messages to Dr Benson and other providers, and hope you will be getting some good direction and information from them as well. I wanted to update you that on our end, we will be back in touch when Dr Veach has had a chance to review your messages and give her recommendations too.

I hope this helps, Jean, and take good care-
Laura RN"

So glad I found this clinic.

[tex]

Hi MamaBeabs,

Regarding the cognizance/memory problem, Brain fog is a common (but undocumented by the medical community) symptom of microscopic colitis. Most of us have to deal with it at one time or another when our disease is active. We are unable to comprehend higher mathematics and complex facts in general when brain fog sets in. The problem can take years to resolve after remission is achieved, similar to the general fatigue that MC causes.

Most of us who wish to retain as much mental capacity as possible (despite MC's effects) take a supplement that supplies the active forms of vitamins B6, B-9, and B-12. The active forms of these vitamins tend to be suppressed when MC is active because our body has a methylation problem and is unable to convert the inactive forms in food and normal supplements into the active forms so that the various organs in our body can use them. Most of us take either Methyl-Gard or Methyl-guard Plus (which is about twice as strong) by Thorne Laboratories. This is a generic version of the prescription-only medication known as Metanx. Metanx is prescribed to treat peripheral neuropathy, endothelial dysfunction, and nerve damage in general, especially among diabetes patients.

As for failing to advise patients about the details of this disease, that's a common trait among gastroenterologists. Most of us are never told any worthwhile details about the disease by our gastroenterologists. They can't very well discuss the disease when they don't understand it themselves, so they normally don't even try.

To be honest, I'm kind of surprised that your GI doc would even respond to your email, because the medical community becomes surprisingly united when faced by dissension. I'm just guessing, but I'll bet that everyone in that hospital is aware of your HIPPA cases, and you are now officially classified (at least within that hospital system) as an individual who is hostile toward the medical system. Maybe I'm just being paranoid, but my impression is that the medical community has the memory of elephants when it comes to bitter lessons, and they tend to hold a grudge virtually forever. But that's just my impression — I could be all wet. I try to get along with them as much as possible and just make my own decisions. I'm gettin' too old to try to reform a system that huge, but maybe you will have better luck. You certainly seem to have the chutzpah and dedication needed for the job.

Most of us are here to learn the details that we never got from our GI doc. That's why this website was created in the first place, so that we could compare notes and learn how to treat the disease. Despite all the mentions of MC on various official medical websites, out in the real world where the rubber meets the road (in the offices of GI specialists around the world), there's little valid (and helpful) information about MC.

Tex

[MamaBeabs]

Dear Tex, I am very interested in Methyl-guard Plus. I am reading that it comes in capsules. I assume since so many here take it that it does not affect ongoing inflammation and is safe to take even in the early phases of medication. I am sorry to hear that brain fog takes so long to resolve. It sounds like everything does, such as the inflammation.

My GI dietician doesn't want me to take any iron, B vitamins or magnesium. Can you tell me the best company that makes them? I was thinking drops might be better, but I don't know. Is all this in your first book~ the one I didn't order because I got them backwards? She also wishes to have me reintroduce a food I have not been eating. I'm not keen on that. I have generally been listening to her, but doing what I want, what I feel I need to do to protect my body from hasty decisions.

This forum is such a great resource, a place to feel safe and restore hope. It provides so much experience through the many men and women who have tried various dietary and medicinal approaches. I am gaining some knowledge of how to proceed and what I should or should not do/eat, etc. but wish I was retaining more of it. I try to read all different posts on different topics. Just hoping to learn the best way to have an MC management plan since I don't really have one. (Gabes-Apg mentioned it.) It's quite overwhelming and I don't know where to start. Today's plan is to get a shower if I ever get out of my pajamas.

As far as fighting systems goes, I fought the foster care agency at age 21 for guardianship of my 12 year old sister. I won sole guardianship which also excluded parental access to her. I was too naive to think I could fail. I was and still am very methodical. It's just a step by step process and has to be done with deliberate precision utilizing the proper laws and defense, and forms, more forms, and documentation.

As an adult, I sometimes have to be more blunt, point out how inappropriate or unacceptable a doctor's behavior is, not just as a doctor but as a human being. No one in the real world of business, education, or even society is permitted to be as irresponsive and inhospitable as doctors are. The medical system has lost its ability to relate to humans. Human kindness and respect is not the vocabulary. People are complacent when it comes to doctors. Doctors are not scary bad guys, they have just gotten away with appearing untouchable to the average person.

For now, I touch who I can, and those I can't I hold accountable. I feel it is the least I can do for others who have drug-induced Microscopic Colitis to ask the medical provider to please stop prescribing it, to find a safer medication. There's no need to disagree or get stressed about it. I have a half dozen studies that list Ranitidine as a major risk factor (4th on the NIH list and on Mayo Clinic's top ten) in predisposing vulnerable human beings to Microscopic Colitis. They are plenty convincing. I have already contacted the makers of Ranitidine.

I wish for others to show human kindness, to treat all people with dignity, to do no harm. My message is simple, just be a good human, value other humans, use your words. Words have power. Silence is not always golden. For healing, yes absolutely, to promote change, no. As long as I have breath in me, I will do what I can, use what I have learned, to make the world a better place. It seems this message now falls in the laps of the medical community.

I know I am facing a challenge with fatigue, with living with Microscopic Colitis. I know my own care is most important or otherwise I would be of no help to others. That is plenty enough reason to get the best care. I am paying for it, the insurance company is paying for it. It's just good business to give your patient the care she needs. The medical community often needs a reality check. Someone needs to say, "You do not have my permission to be complacent or irresponsible regarding my health care. You are not providing the service you have been hired for. If need be, I will share this with my insurance company. If you are not up to the job, just say so and I will find another doctor." They don't like to be fired. Who does? See, they are human. They just need to wake up.

[tex]

Many of us have good luck with Doctor's Best brand Magnesium Glycinate. Iron is not easy to supplement because most iron supplements tend to cause digestive upset. Some here use blackstrap molases and/or they cook using cast iron pots. Liquid supplements generally work as well or better than most other oral supplements. I don't recall if that is mentioned in either book.

No one in the real world of business, education, or even society is permitted to be as irresponsive and inhospitable as doctors are. The medical system has lost its ability to relate to humans. Human kindness and respect is not the vocabulary. People are complacent when it comes to doctors. Doctors are not scary bad guys, they have just gotten away with appearing untouchable to the average person.

Medical professionals are unique in that they are the only professionals who get paid in full whether they provide a benefit for their patients or not. They get paid even if they kill the patient. I have a hunch that this arrangement has a lot to do with their cavalier attitude. IOW, many of them don't care because they don't have to care. Compare that with an engineer who designs a bridge that falls down. That engineer wouldn't be likely to have a job for very long.

Tex

[MamaBeabs]

Didn't figure out how to quote. Brain Fog.
"Medical professionals are unique in that they are the only professionals who get paid in full whether they provide a benefit for their patients or not. They get paid even if they kill the patient. Shocked I have a hunch that this arrangement has a lot to do with their cavalier attitude. IOW, many of them don't care because they don't have to care. Compare that with an engineer who designs a bridge that falls down. That engineer wouldn't be likely to have a job for very long."

My husband is a home builder/remodeler and is responsible for the homes he builds for years per his contracts. Besides, you wants a builder who isn't the best? I as a nanny would never get hired if I provided subpar care to children. In fact, I could be be arrested for neglect! Speaking of children, we teach them to treat others kindly, how to have conversation, how to be respectful and we keep them safe and protect their dignity. I find it hard to believe doctors didn't learn how to be good humans when they were little. It is definitely that they don't care.

In AZ my Mom showed me a place where doctors live. It is commonly known as "Pill Hill." They have the power to write prescriptions which many people want, even if the prescriptions are harmful or dangerous. [/quote]

[tex]

To quote an entire post, just click the "quote" button in the upper right corner of that post.

To quote a phrase or part of a post, copy and past it into your response, highlight it, then click the "quote" button above the reply/posting/response box.

Tex

[Pebbledash]

Silly question, perhaps . . . is it common (or, at least, not unusual) to have the odd "bad" day when on Budesonide?

I'm on my last few days (unless I decide to prolong the taper) of 3 per day, but this last week I have had the odd day in which I returned to the D. Frequency is still okay, but I did have to rush a bit to the bathroom, and found it was all water.

On these occasions I've supplemented with imodium and pepto bismol. It worries me a bit though . . .

Cheers
Paul

[MamaBeabs]

That would worry me too. But don't stress about it or it will become worse. I hope your doses of anti-diarrheals work. Maybe tapering longer? I'll let the experts weigh in. I'm not there yet on those last days. good Luck!