tired in my head

[harma]

I have another question. My pills are working quit well, no more diarrhea. But my bowel is still somewhat upset, cramps. On really very quiet days, it goes fine. Also physical exercise (if that is the right word), I go swimming 3 times a week, go for an hour walking don't give my any problem. It even makes my feel better. I doesn't make my tired. My physical condition looks, despite to four months diarrhea still fine (what surprises me). But (yes the but) mental, that's another story. When I meet too many people on one day, have more than one appointment, busy dealing with people, talking, listening etc than my complaints get worse. This was before I started taking the pills (yes my rotpillen budenofalk) and also after. Saturday evening I went out for dinner with some friends, and today I went out for lunch with a friend and went shopping. My bowels are so upset now.
Does anyone recognize this. I mean not in detail, but the feeling physical it is all oke, swimming, walking even cleaning my house goes okay. But mentally, so little is so easy to much. I don't mean problems to concentrate, I can read a book, a study a couple hours day, that is all fine. Just as soon as people are involved it gets worse. What works best for me at the moment is just a regular quiet life. Go to bed by 10 get up at 8, do some reading and a little social life.
I hope my question is clear, it is for a huge difference before my complaints of CC started in may.
I am really interested if there are people that recognize this

[ant]

Dear Harma

But my bowel is still somewhat upset, cramps

When I started on Entocort - my "rotpillen" (a like this word!) - I fund that gas/bloating and cramps stayed a problem for a week or so after my D had got better. I think if you stick to a diet as well as taking your rotpillen the cramps should get better overtime.

I would have thought that exercise is a good thing to keep up. One member, Jill,runs marathons regularly.

My personal experience is that I have been physically tired, but not really mentally tired. Perhaps others will have some things to say on your questions.

all best, Ant

[tex]

Hi Harma,

I agree with Ant, that the cramps, and some of the other GI tract symptoms, will probably take longer to resolve, than the D, but you should see some improvement within a week or so, as he mentioned.

Yes, we are very familiar with mental/brain problems associated with this disease. MC, (we often use the term MC, which stands for microscopic colitis, in place of the names for all the various forms of this disease, including CC, LC, etc.), tends to cause stress, (both physical and mental), and it causes depression and anxiety. We are all different, and some of us do not have the mental/brain issues, while for some of us, it's a major problem, (it was really bad in my case - I even had what we call brain fog, meaning that I had trouble thinking clearly). Many people with MC find it necessary to take an anti-depressant, or anti-anxiety medication, in order to control those symptoms, (depression and anxiety).

Much of the mental stress comes from the fact that gluten can cross the blood/brain barrier, and it can cause neurological issues. Most GI doctors consider MC to be a disease of the colon, but the fact is, it can affect the entire GI tract, and because gluten-sensitivity is usually involved, for many of us, it can affect just about any organ in the body, after it gets into the bloodstream, and crosses the blood/brain barrier. In fact, for some people, gluten causes neurological problems before it causes GI problems.

After you have been on the GF diet for a long enough period, so that the damage caused by gluten has sufficient time to heal, those symptoms will slowly fade away. It can take several months to a year, (or longer, for some of us), to heal completely, and the mental issues are usually the last to go away. They will go away, though, if you're faithful to the diet, and your body has time to heal.

Tex

[barbaranoela]

Greetings Harma-----

My bowel *constipation* issues are due to back surgery that I had --hmmmm coming up 3 years ago---if my BRAIN is figuring right--

Right now I am seeing a wellness doctor --who also started her career in the field of cancer but just didnt feel that was *calling* her so she switched over to treating the *whole* body functions---the only function we cant figure out is how I *lost my senses of smell and taste!!!

My body has been covered from HEAD to TOE~~~ and I mean it---

Due to megga years of family stress--- I am termed ADRENAL FATIGUED!!!!
Right now I am taking loads of Vitamins---(which I had posted previously)--

I imagine this hasnt anything to help U with your issues but I imagine anything that we can post of ourselves can lead somewhere and maybe it will be over that beautiful RAiNBOW!!!

Best wishes for better dayz--

Barbara

[harma]

after writing the the message today, the d. is back. For one week it did go so well with 3 mg of budesonide. The only explanation I can come up with is gluten. Since last Wednesday (after hearing my diagnosis CC) I started eating Gluten again. What did I know, CC has anything to do with gluten. Before that I have been of gluten for two weeks, after samples have been taken from my small intestine for a celiac diagnosis, which was negative.

Earlier this summer I had a kind of miracle recovery of 4 days no gluten. And I started eaten them again because of the idea "to get diagnosed you have to eat gluten" (diagnosed for/with celiac disease). I had such a strong feeling, gluten is the problem, but than if a GI doctor tells you, you have no celiac disease. I got confused. There is a voice in the back of my head telling me for a while now over and over again: stay of gluten, gluten are bad for you, don't eat them. One of those things you just know without knowing why.

Four of five years ago, at work. Two people talking about food what are you eating? it was gluten free bread. I remember now, at that moment, I already knew Gluten were a problem for me too, just something you know in a blink (or how you call it a split of a second). How much more prove do I need. So from tomorrow Gluten free again.

Same story for milk, I already know for a couple of years milk is bad for me. Not that it is ever tested, just a feeling, a voice in my head. I thought it was lactose, but maybe it are all the diary products. And that for a daughter of a diary farmer!! I grew up on farm with milk cows (is that how you say it in English cows you milk are milk cows?). If I am diary intolerant does that mean than for all kind of diary or only cows and can I eat goat cheese?

[tex]

If you have been eating gluten again, and/or dairy products, then yes, that is probably why you are having D again. 3mg of budesonide is not enough to keep you from reacting, while you are eating gluten and/or dairy products.

Yes, milk cows is the way we would refer to them. Many "experts" claim that some people who cannot tolerate cow's milk, may be able to tolerate goat's milk, but everyone that I know who has tried it, has been unable to use goat milk products, if they are sensitive to the casein in cow's milk. I suspect that many "experts" confuse casein intolerance with lactose intolerance. Lactose intolerance is much easier to deal with.

Tex

[adelie]

Hi Harma,

Yes, exercise does wonders for me. Walking seems to be the best. I have a lot of issues with GI motility and food not digesting so if I didn't chew well, it doesn't move through gracefully. Walking seems to help most with getting trapped gas move along and keep the cramping from that down. Exercise can also help stimulate water absorption which can help with the D as well.

Just before I started with the meds, I had huge issues with brain fog to the point that I'd occasionally drive home from work and not know how I got there. Of course, that was usually the really bad days when all I could really focus on was 2 more miles to home where the bathroom is - hope I make it! You may have a similar thing going on when people are involved. If you're at home alone reading a book, you don't have to worry about anyone but you noticing that quick run to the bathroom. Around other people, you're probably a little more self-conscious about the tummy rumblings, so you're a bit distracted. After a while, your friends will realize you just have an alien life form living in your mid-section that wants to join the conversation.

You might want to experiment a little with when you take your pills. The doctors always recommended to me to take entocort (rottenpills) in the morning when natural steroid levels are usually high. I'd be a little more tired than usual during the day and then start waking up at bedtime. The meds seemed to wear off in the middle of the night and then I'd start off the next day tired. I take 1 entocort in the morning and 2 in the evening now and it works much better for me.

Karen

[Gayle]

Hi Harma,

Bloating and excessive gas formation does seem to often accompany the use of Entocort when a patient is first using that medication. No one had any concrete suggestions for me in this regard. I did find that using a Simethicone based product was helpful. Ask at you pharmacy for this. In the USA such a product is called Gas-EX.

I don’t believe that the Entocort is “causing” the bloating directly. That bloating effect -- is instead -- a by product of changes in the gut which are taking place as this drugs effectiveness is unleashed.

My ONLY suggestions are: 1.) Stay well hydrated, 2.) Maintain a good exercise schedule, 3.) Try using an anti-gas product such as Gas-EX --- when needed, 4.) Avoid dietary intake of foods that you have known to be troublesome for you. THEN TOO as you already know, 5.) make sure you are taking extra Calcium as well as Vitamin D. 6.) No NSAIDS.

And yes --- there definitly is a “Brain – Gut connection”.

This medication is great – but is not a magic bullet, as some seem to think.

Since the dose you say you are taking (3mg per day) is quite unusual when starting treatment for newly diagnosed CC, it might be worth rethinking reducing the dose. That is your individual decision tho of course.

On another thread here Tex has published the difference between (Brand) Entocort and (Generic) Budenofalk Budesonide.

What is being discussed there is the Brand name (Entocort) vs. the Generic name (budenofalk budesonide).

Generics contain the same active ingredient as their equivalent Brand name. However, all other (inactive) ingredients, which are used to serve such purposes as binding the ingredients and coating the pill, can be, and are, different. (just as Tex has very neatly accessed and printed -- for all to read). Remember, they do have to figure out how to deliver the main ingredient in a palatable and manageable fashion, without imitating the original exactly which would be an infingement on product rights laws.

I wonder if you (Harma) would be able to have access to the actual Brand product which is Entocort, instead of the budenofalk budesonide?????

Entocort is after all, manufactured in Europe. But, -- most and probably, you would have to pay cash to do be allowed to do this.

This is not to be interpreted as inditing the use of Generic meds. They are, after all, much more economical making them available to more people. AND, by the very nature of having out lasted their Patent Protection in the USA, they have acquired a longer track record of efficacy and safety.

It has been observed that in some cases -- with certain medications -- the generics do not exactly measure up. But in most cases, they do serve their purpose well.

IMHO --- it is worthwhile to try the Brand first. For longer term treatment, trying to follow with the generic to evaluate further can be just fine, and certainly worth the $$$ savings.

BELIEVE -- you WILL get your CC under control.



Best of Luck,

Gayle