Newly diagnosed with MC

CathyMaine · Post by **CathyMaine** » Fri Mar 30, 2012 12:01 pm

Hi there,
I was recently diagnosed with M.lymphocytic colitis in Feb. after a colonoscopy and was started on Entocort 7 weeks ago. I had been suffering from explosive D. up to 15 times a day for approximately 6 months. It took 2.5 weeks but finally the D is gone and I am now tapering off the Entocort per my GI's instructions. I have gone from 3 to 2 with no real change and just started 1 day today, so we shall see. In addition, I have also gone gf and df, recently took whey out of my diet, and watch everything that I put into my mouth. My question, I have a follow-up with my GI next Friday. Are there specific questions that I should be asking her? I am a relatively young, active, fit female and one of my major complaints was the overwhelming fatigue that I felt. I do feel that has lessened somewhat but am wondering if I should have my B12 levels checked? Any other advice? I have my yearly physical next week with my PCP as well and will talk with her about options for the fatigue. My other major symptom right now is my blurry eyesight, that has gotten worse. Does anyone else have this? It seems to be especially bad in my left eye and there are times when I just can't focus on my computer screen or in print. I have an appt. with an optometrist in a few weeks and will also bring this up with my GI doctor. Thanks all. I have been busy reading this board and have found it to be very informative!!

Zizzle · Post by **Zizzle** » Fri Mar 30, 2012 12:15 pm

Welcome Cathy!!
I also have LC, diagnosed at age 35, and I am finally in "remission" after 2 years of GF/DF mostly soy-free eating. I never took meds besides Pepto Bismol tablets, but I wonder if my recovery might have been quicker with Entocort. But my GI only offered Asacol

. Your fatigue is probably related to your gluten intolerance, and possibly to vitamin deficiencies. You may want to ask your doc to check your Vitamin D and B12 levels. A CBC to check for anemia and white blood cell counts would be prudent too. If going strictly GF and DF doesn't lift the fatigue, you may want to check for other causes, liver function tests (a basic chem panel will cover that), ANA screen to check for autoimmunity, maybe Epstein Barr?

Not sure what's going on with your eyes. Do you have dry eyes and mouth, or just blurred vision?

CathyMaine · Post by **CathyMaine** » Fri Mar 30, 2012 12:35 pm

Thanks for the welcome Zizzle! I did have a complete CBC done and stool samples, etc. before being referred to my GI and everything came back "normal". I will ask about the Vitamin B12 and D, in addition to an ANA screen, thanks so much. My eyes are irritated and red the majority of the time and my eyelids are red as well, very strange. No to the dry eyes and mouth....and one more thing, I do have some major wrist joint pain so it would seem that the ANA test would be very appropriate.

Post by **tex** » Fri Mar 30, 2012 12:57 pm

Hi Cathy,

Welcome to the board. Uveitis is somewhat common with MC, but since your blurred vision has become worse since you started taking Entocort, I'm going to guess that it is probably due to the Entocort. Though the label may not specifically mention it, quite a few of us have neurological symptoms as a result of taking Entocort, and blurred vision is a somewhat common complaint among those who have neurological reactions to the drug. A couple of years ago I was given a prescription for ear drops, (after having a fungus removed from an ear), that contained a corticosteroid. I had to stop taking it after a few days, because of blurred vision, especially in the eye nearest to the ear that was being treated.

Fatigue is a standard symptom with MC, (though many gastroenterologists don't seem to realize that). Our fatigue slowly resolves, as we get our symptoms under control. Unless you were short on B-12 initially, a half a year's worth of malabsorption shouldn't cause a B-12 deficiency. The body normally stores enough B-12 to last for several years. Usually, if you have an acute B-12 deficiency, you will have paresthesia symptoms at one or more locations on your body. Still, it's almost impossible to overdose on B-12, so it shouldn't hurt to supplement with it. Be sure to take folic acid, also, since folate is necessary to aid in the absorption and utilization of B-12. For most of us, vitamin D is more important than B-12, because all IBDs deplete it, and vitamin D is critical for proper immune system health.

Arthritis symptoms are also quite common with MC. About 10 to 12 years ago, my arthritis became so bad that I had to use a cane for walking, and several fingers began growing crooked and twisted. Eliminating my food-sensitivities resolved those problems.

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

Tex

CathyMaine · Post by **CathyMaine** » Fri Mar 30, 2012 1:33 pm

tex wrote:Hi Cathy,

Welcome to the board. Uveitis is somewhat common with MC, but since your blurred vision has become worse since you started taking Entocort, I'm going to guess that it is probably due to the Entocort. Though the label may not specifically mention it, quite a few of us have neurological symptoms as a result of taking Entocort, and blurred vision is a somewhat common complaint among those who have neurological reactions to the drug. A couple of years ago I was given a prescription for ear drops, (after having a fungus removed from an ear), that contained a corticosteroid. I had to stop taking it after a few days, because of blurred vision, especially in the eye nearest to the ear that was being treated.

Fatigue is a standard symptom with MC, (though many gastroenterologists don't seem to realize that). Our fatigue slowly resolves, as we get our symptoms under control. Unless you were short on B-12 initially, a half a year's worth of malabsorption shouldn't cause a B-12 deficiency. The body normally stores enough B-12 to last for several years. Usually, if you have an acute B-12 deficiency, you will have paresthesia symptoms at one or more locations on your body. Still, it's almost impossible to overdose on B-12, so it shouldn't hurt to supplement with it. Be sure to take folic acid, also, since folate is necessary to aid in the absorption and utilization of B-12. For most of us, vitamin D is more important than B-12, because all IBDs deplete it, and vitamin D is critical for proper immune system health.

Arthritis symptoms are also quite common with MC. About 10 to 12 years ago, my arthritis became so bad that I had to use a cane for walking, and several fingers began growing crooked and twisted. Eliminating my food-sensitivities resolved those problems.

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

Tex

Thanks Tex...never thought the blurry vision could be the result of the Entocort...duh, LOL. thanks for that! As far as B12, I have heard that it's most effective in shot form, rather than pill but of course I will have my levels checked 1st and then go from there! Thanks again for the welcome!

Post by **tex** » Fri Mar 30, 2012 1:41 pm

Cathy,

The sublingual lozenges of B-12, (designed to be dissolved under the tongue, and some are available combined with folic acid), are just as effective as the inoculations, because they are in the form of methylcobalamin, which is the active form of B-12. They bypass any malabsorption problems in the intestines.

Tex

Zizzle · Post by **Zizzle** » Fri Mar 30, 2012 1:51 pm

Cathy,
I've been taking B-complex 100 in capsule form since the MC started. I was borderline low on B-12 and now my B-12 is in a very healthy range. As Tex mentioned, other B vitamins are depleted in MC as well. Not to mention you're avoiding "fortified" breads and cereals when you are on the GF diet. I actually notice I feel worse on days that I forget my B vitamins, so do consider taking a B-complex, not just B12.

brandy · Post by **brandy** » Fri Mar 30, 2012 4:10 pm

Hi Cathy,

Welcome! Yes I had the joint pain and fatigue. In many ways the joint pain and fatigue were worse than the WD that I was able to get to soft serve state thru yoga and diet before even finding this website. I took the supplements that Tex and Zizzle mentioned. Had numerous tests...they always came back normal. I found I had to "under do" and get a lot more sleep than normal. My energy levels are finally coming back. Hope this helps, Brandy

CathyMaine · Post by **CathyMaine** » Sat Mar 31, 2012 1:42 pm

Thanks everyone for the help and the supplement ideas. Tex, I will look for the sublingual b12 lozenges. I wish that I could sleep more Brandy. My sleep has been worse since starting the Entocort also. I'd love to try yoga. I'm into weightlifting and enjoy running and think that yoga would help me relax.

Unfortunately, bad news today my D came back full force this afternoon. I started tapering down to 1 entocort yesterday so I'm sure that's the reason. I wonder if I should go back to 2 tomorrow and Monday and put in a call to my GI? I see her on Friday for a follow up. Very discouraging!!

Post by **tex** » Sat Mar 31, 2012 1:58 pm

Cathy,

Yes, if I were in your shoes, I would increase the dosage of Entocort, because IMO, if you have been using Entocort for less than roughly 6 months, then you haven't been using it long enough to allow any significant healing progress in your intestines. If the 6mg dose doesn't relieve your symptoms, then you may have to increase the dosage to 9 mg, because experience shows that each time we discontinue taking Entocort, (or reduce the dosage), it becomes less effective for us. You need more time to allow the diet to heal your intestines. Also, if you don't get symptom relief, you may need to remove all sources of soy from your diet, in addition to the gluten and dairy that you are already avoiding, since about half of us are also sensitive to soy.

If the side effects of Entocort, (at a higher dosage rate), are more irritating than the benefits, you may have to consider relying on the diet alone. The Entocort can buy you some healing time free of GI symptoms, though, if you can tolerate it.

Good luck,
Tex

CathyMaine · Post by **CathyMaine** » Sat Mar 31, 2012 2:08 pm

Thanks for that Tex. I am going to up the dose as the side effects of the meds are much easier for me to tolerate than the D! I also don't do soy, but thanks so much!

brandy · Post by **brandy** » Sat Mar 31, 2012 10:12 pm

Hi Cathy,

Yes, I had to go backwards (i.e. back up a dose) I believe twice while I was on Entocort. I think I just stepped down too soon. Then I reattempted later and it was fine. Also be aware that most of the GI docs prescribe a 3 month term on Entocort which in many cases is not quite long enough. It is not uncommon for some of us to be on Entocort 4-6 months.
Sorry you are having the eye issues and sleep issues. A lot of users don't seem to have side effects from Entocort but I found the side effects to be pretty severe. If the side effects become too severe I think Tex mentioned diet alone as an option. A third option would be to attempt the pepto bismol treatment which I believe is 8 or 9 pepto bismol tablets per day for 8 weeks along with diet. Dr. Fine talks about the pepto bismol treatment on his web site and also I read about it on the John Hopkins web site.

I saw that you work out and run. I worked out throughout the whole disease and while I was flaring but did lesser workouts than when I was not sick. At the time I wasn't sure if it was the right thing to do or not but now looking back I'm glad I maintained my workouts...although they were much reduced than what I did when not sick. The workouts did burn some calories that are tough for us to sustain but overall helped to relieve the stress of the situation and helped to maintain muscle mass. That being said there was a lot of times that I was just too fatigued to work out.

Good luck w/ your appmts. Brandy

MaggieRedwings · Post by **MaggieRedwings** » Mon Apr 02, 2012 7:20 am

Hi Cathy & Welcome.

I would definitely suspect the Entocort since this was a side effect I suffered when taking it. After I quit the entocort it went away so could be the underlying problem.

Maggoe