Budesonide

[michelleneujahr]

Hello. This is my first post. I was just diagnosed two weeks ago and my doctor has but me on budesonide. I am having constant headaches, ringing in my ears and feel very on edge and hyper. Any one else experience this?

[tex]

Hi Michelle,

Welcome to our Internet family. If you did not start taking any other medications just before those symptoms started, you are definitely having an adverse reaction to the budesonide. That doesn't happen often, but those symptoms are signs of an allergic reaction and they are serious enough that it wouldn't be safe to continue taking it. Since you have been taking it for only 2 weeks, you should be able to safely stop taking it cold turkey without any risk of withdrawal symptoms. If your symptoms persist for more than 3 or 4 days after you stop taking it, please check with your doctor or the ER, because if they continue for too long, some of them, such as the tinnitus and headaches might possibly become permanent problems.

Most of us here control our symptoms by changing our diet to totally avoid the foods that are causing the inflammation in our intestines.

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

Tex

[michelleneujahr]

Thanks for the reply - symptoms are getting worse everyday In addition to putting me on the budesonide they are weaning me off zoloft. I called my doctor and they said not to be concerned - that this is normal. I am not feeling normal. I am reading your book right now and am hoping to be able to manage this with diet. I am feeling a bit overwhelmed - even with the budesonide I am still having lots of loud rumbling, cramping, some diarrhea, urgent stools and lots of bloating. My doctor told me diet is not an issue but I am starting to not believe that is true as some things seem better than others to eat - not really sure what to eat.

[tex]

Hi Michelle,

This is an interesting situation, because Zoloft does not cause tinnitus (and budesonide is not known to cause it either), although Zoloft can make tinnitus symptoms worse in some cases if it exists before starting the drug. I have a hunch that your doctor is bluffing and doesn't know what he's doing, because there is no reason why weaning off a drug should cause tinnitus. If anything, it should resolve it (but not cause it). IOW I still suspect the budesonide, especially if the tinitus began soon after you started taking the budesonide. As someone who has had tinnitus for over 30 years, I can tell you that once it becomes permanent, it will never get better — it only gets worse.

You're not taking bismuth subsalicylate (Pepto-Bismol), are you? It's well known for causing tinnitus, especially at the higher doses used for treating MC.

I'll guarantee that your doctor is wrong when he says that diet does not affect MC. Budesonide will mask the symptoms for some patients, but the "remission" will only last until a few weeks after the treatment is ended. For many others budesonide will not bring remission until they at the very least cut gluten out of their diet. But if you want the budesonide to start working promptly, and your remission to last indefinitely, you will need to cut all of the foods that cause your immune system to produce antibodies out of your diet (and avoid even traces of them), because they are highly inflammatory once MC is triggered.

For some guidelines to help you get started selecting a recovery diet, you can download Diet Guidelines from the Microscopic Colitis Foundation at the following link:

http://www.microscopiccolitisfoundation ... loads.html

Unfortunately many GI specialists are still practicing in the dark ages with MC because they simply don't understand the disease.

But note this: If your MC is drug-induced (that is if it was originally caused by the SSRI), and you have not had symptoms for more than a few weeks, so that you have not yet developed food sensitivities, you might be able to gain remission of the MC symptoms simply by discontinuing the SSRI. Most of us are not that lucky, but it does happen in a few cases. If this applies to you (and stopping the drug brings remission from your MC), then all you would have to do to remain in remission for the rest of your life would be to avoid SSRIs for the rest of your life.

So your GI doc is at least aware that you need to wean off the PPI, because for most drug-induced cases, remission is not possible until the use of the drug that caused it is discontinued.

Tex

[michelleneujahr]

The symptoms started when I started taking Budesonide - so I have no doubt it is what is causing the ringing in the ears - headaches and dizziness, feeling off kilter. I called my doctor to get off them. I am down to eating just a few items every day. The D is gone but am still having massive stomach pain and bloating. I have had symptoms for many months - 20-30 D a day and had had a bout that lasted a year a few years back. They diagnosed it at that time as CIBO, treated with antibiotics and probiotics and I was better for a year or so. This last bout has been awful. They are hoping taking me off zoloft will help.

I know I need to to the elimination - I am getting conflicting views about gluten - my doctor even told me to eat higly processed foods - i.e. white bread as it would give my colon a rest. I have been off dairy for a long time, ready to give up gluten.

What can I eat? I am struggling to feel good eating anything.

I have basically been eating
Bananas
Applesauce
Oatmeal
Turkey/Chicken
Rice
Rice crackers
Broth -Turkey soup

Am I eating to many items?

[T]

Michelle

We are all different but I cannot eat applesauce or bananas that are even slightly brown on the skin and I don't even think of trying oats of any kind because of cross contamination.I have been off gluten for around one year and even the slightest cross contamination makes me very sick.
Hope this helps

Terry

[Gabes-Apg]

a few people can react to oats and oatmeal.....
and as Terry has mentioned, over ripe bananas can cause issues for many (histamines)

finding some safe vegetables and having soups and stews based on your safe proteins and vegetables is a good meal option.
things like Sweet potato and/or carrots mixed with the rice and your safe protein as a soupy stew.

a good post to get ideas on eating and the benefits of what we are suggesting is Erica's journey.

http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0

[tex]

Michelle,

I agree with what Terry and Gabes posted. Even certified pure oats cause me to react the same as wheat gluten, and many others here have the same experience. You're not eating too many items, but you may need to change 1 or 2 of them. Some of us react to chicken, for example, but virtually no one reacts to turkey. You've got the right idea, and you are on a recovery path. Healing takes time though, because for some reason or other, when the intestines are inflamed they heal very slowly. And until they make some progress with healing, digestion is compromised, which causes the gas, pain, and bloating.

Tex

[michelleneujahr]

Thank you so much. I have made some changes - got rid of the applesauces and oatmeal and limiting bananas - though I may cut those out as well. I also have stopped eating chicken - eating turkey and tried lamb.

I am not D free yet and the ear ringing from the Budesonide is still constant but I am feeling hopeful. I have read your book Tex and am re-reading. Lots of good stuff. I am learning and committed to this journey towards health.

[tex]

Michelle,

You're on the right track, and you have the dedication and motivation that's necessary to control this disease. Normally, if budesonide is going to work it should bring remission in less than a month, so there's a possibility that it may not be effective for you. It takes longer to reach remission with diet control only, but you will get there, whether the budesonide is helping or not.

Thank you for the update, and the best of luck to you in your journey back to health. Please keep us posted on your progress.

Tex

[gac]

Is there any hope of a new medication coming on the market to replace budesonide or as an alternative to budesonide? After 10 months on this drug (I've been on it probably at least 60% of that 10 months, maybe more), and eating a severely restricted diet, I still suffer from surprising bouts of diarrhea that force me to stay less than 30 seconds from my bathroom. To be further away than that would be awful, even if I was wearing an adult diaper. I've left my house only 4 times in 3 months for that reason. Good thing I don't mind being a hermit but I do occasionally like to go to a concert or sporting event or to the grocery store. I am taking antihistamine regularly plus antidiarrheal. But if a new drug is out or coming out, I'd like to know.

[Gabes-Apg]

Gac,
Based on what you have posted to the forum, during this time your diet was maybe not the ideal ingredients, it may have been restricted eating plan, but it was not providing protein and the right nutrients to help reduce inflammation and heal, also, you were deficient in Vit D, and you had surgery and some other external triggers.

I have not heard of any new treatment medications for MC or Other IBD's.

I would encourage you to fix Vit D deficiency and stick to better eating plan that has been suggested to you, and stick with this foray least 8 weeks.

There are a Few people that for reasons unknown, that do have ongoing issues no matter what. Lesley, Gloria come to mind. They have done medication and strict eating plan for many years....

[tex]

Gac,

I'm not aware of any new medications that might become available anytime in the near future. There are some research studies in progress, but none that I'm aware of that are close to coming up with any alternative treatments for IBDs, unfortunately.

If you are like many of us, you may do much better after pollen season is past. Many of us find that the extra mast cell activity that occurs during pollen season is enough to keep our immune system extremely sensitive so that it's much more difficult to maintain remission during pollen season. Many parts of the U. S. seem to be having an unusually intense pollen season this year.

Tex

[gac]

I live in metro Atlanta where pollen in spring (which lasts for months) is so very heavy that people in other parts of the US have no idea how awful it can be. Sheets of yellow blow thru the air and cover everything. I take medication constantly this time of year but always feel like my eyes are itchy and I sneeze even with the medication. I try to avoid being outside very much because of this. But I had no idea that intense pollen season could be affecting my intestinal issues. Maybe it is not so much what I am or am not eating that is kicking up the flare-up but the seasonal allergies??? Makes me feel better about that. I will continue doing what I am doing and know that this is life. My dad was never diagnosed with this but suffered from this for the last 30 years of his life. Gastro docs completely missed a diagnosis but my stubborn dad would never have changed his eating habits anyway. His diarrhea was constant and uncontrollable for many many years. My brother who is 50 is beginning to have problems. My dad is dead now so I can't tell him I know what is wrong with him. But I realize this is an inherited problem. I will learn to live with it and do all I can to make it better. Thanks for your help.

[tex]

Yes, my mother lived with the same symptoms that I have for the last couple of decades of her life, but no one had a clue what was causing her problems. And like your dad, I doubt that she would have changed her diet anyway. She even had the same magnesium deficiency problems that I had, because she was always complaining about not being able to draw a deep breath. So now I wonder if genetics have a role in magnesium deficiency, or at least a role in magnesium deficiency symptoms.

Tex