New here and overwhelmed!!

[Tanya Lynn]

I just found this site 4 days ago and only wished I would have 7 months ago...
I really don't know where to start but I'm going to give it a try.

Back on Oct 22, 09, I went to my PCP to get the Flu shot because my grandson, who 4 months old at the time, his Dr. said all who comes in contact with him
needs to get the flu shot. I'm 49 and have never ever had a flu shot, didn't
believe in them. But it was at the time when all the media was telling everyone
to get the flu and the H1N1 shots... So, I went to my Dr. for both shots and
I thank God that they only had the Flu shot. Within 12 hours, 2 am that night,
I started having diarrhea and severe stomach cramps. Now, you must know that
4 years back, I had a colonoscopy at 45 yrs. old, and was DX with IBS-C. I have
had chronic constipation all my life. I would have to take laxatives to even have
a BM. So when the diarrhea started, I didn't know what was going on. This was
on a Friday so I thought I would just let it run its course. Well, it got so bad
up to 45-50 times a day. The pain was worse than child birth.. This went on until
I could call my PCP on Monday and went in for an appt. She wouldn't believe me
that it all started 12 hours after I got the flu shot. She gave me Lomotil and
Imoduim and she that if it didn't stop call her back. It didn't stop, still going
up to 45 times with explosive diarrhea and the pain is indescribable. Two days
later I called her and she said to go to ER. To make a long story short, I was
admitted because I had a severely toxic liver, dehydrated and in severe pain.
I was in the hospital for 5 days, on Morphine, this was the scariest thing that
I have ever been through. No Dr. at the hospital would believe me that
this reaction was from the flu shot. Here you have a person who has had
chronic constipation her entire life, get the flu shot, and have explosive diarrhea..
The dr's try to do a colonoscopy while I was in the hospital but my colon was
too imflammed. So after 5 days they sent me home. I continued with the
diarrhea, down now to about 30 times a day. I was so sick that I stayed
in bed for a month. I switched GI Dr.s and 9 weeks after the shot, still having
the diarrhea, I went in for a colonoscopy. The results came back, Lymphocyctic Colitis. During this time I was seeing my acupuncturist, she was helping and
told me to eat sticky rice, bananas, plain chicken, and nothing spicy. At this
point I had lost 27 lbs, it was absolutely the worst way in the world to lose
weight. After getting a DX, my GI dr. said to take 8 Pepto a day for 8 weeks.
I tried it for about week or so, didn't work, made me feel terrible. I went back
to my GI dr., and he wanted me to start on Entocort EC. I stopped by the
pharmacy and filled the prescription, came home and read the side effects and
decided not to take it. Oh, one imortant factor I forgot to mention, is that
I had be gluten free for 4 years at the time I got the flu shot. Going back five
years when I first went in a GI dr, due to my chronic constipation, she did
a colonoscopy and didn't find anything other than a _____ colon, forgot the
name. Basically, the color of my colon in spots where dark black due the
overuse of laxatives that I have taked all my life. She said that I had IBS-C and
told me to get on a high fiber diet. I tried that and it just made things worse.
This is also when I just quit smoking after many years. It seems like that my
stomach problems increased when I quit. So, after doing research on my own,
I decided to go Gluten free, which did seem to help the discomfort, blotting,
cramping that I was having. So jump forward to this year. So this was Jan. 10,
I decided not to take the Entocort, and just continued eating rice and chicken.
Towards the end of January the diarreha stopped. Just out of the blue. Gone,
praise the Lord. I was so happy. I didn't do any research or my dr. didn't tell
me that I could possibly have another flare up. I started back eating whatever
I wanted and even started back eating gluten, some bread and pasta. Well,
24 days ago, my husband and I had gone out of town for father's day, and
when we got back we both had gotten a stomach virus. His lasted him 3 days,
however, mine hasn't stopped in 24 days. The severe diarrhea with the pain, oh
the pain... I couldn't believe that it was back. I thank God for finding this website,
it has been a life saver. I've read so much in the last few days that I made a
appt. back to my GI, went yesterday and he put me on Endocort. I started my
first dose today, and have gone back Gluten free and dairy free this time as well.
I would appreciate any feedback, Tex, you are a wealth of knowledge and I'm
sure everyone here appreciates you so much. I'm a southern gal, who loves
to cook. I thought that cooking gluten free was a challenge but now cooking gf and df will be the biggest challenge I've ever faced. I know there's
hope here and with God's help, praying things will improve.

[JLH]

Tanya, I'm so glad you found us. This is the best place in the world for information and support. Keep on reading here and at www.enterolab.com and or www.finerhealth.com Sorry things have been so terrible for you.

I'm sure Tex will be along soon with some advice. As he always says, you can get your life back.

[tex]

Hi Tanya,

Welcome to our internet family. Wow! What a story. Wait until Mary Beth reads about your reaction to the flu shot - she also had a very adverse reaction to a flu shot. The official medical reaction is always predictable, of course. Their default reaction is - "Impossible!"

By the way, the condition that your GI doc described 5 years ago was probably melanosis coli, or pseudomelanosis coli, wasn't it? Yes, that's caused by long-term use of certain common laxatives of the senna group.

Stopping a long-term smoking habit is a common cause of MC. Nicotine is protective of inflammatory bowel diseases, so a cessation of smoking can trigger an IBD. (Of course, the doctors are not likely to tell you that, when they advise you to quit). That may be why your digestive system problems seemed to increase about that time. Microscopic colitis is not always diarrhea-oriented. It can also present as constipation, or alternating D and C, but not all GI docs are aware of that, because the original description of the disease, only mentions diarrhea, and most GI docs do not seem to aggressively search out new information on MC.

I have no idea why the flu shot caused your digestive system to suddenly "go balistic", but obviously the shot triggered some sort of severe reaction, almost certainly originating in your immune system, which then caused an autoimmune reaction within your GI tract, most likely in your intestines, obviously.

If you like to cook, you should have no trouble controlling MC, especially since you're already familiar with the GF diet. Many of us also have to avoid all dairy products, so you are probably already on the right track. About half of us are also sensitive to soy, and all it's derivatives. You might want to check out Dee's Kitchen, when you have some time. Dee is a professional chef, who has perfected and assembled several hundred recipes for all types of foods, and all of her recipes are free of gluten, dairy, and soy. Plus, she has substitution suggestions for other food ingredients, for those of us who have other food sensitivities.

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

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

Tex (Wayne)

[Joefnh]

Welcome Tanya. I'm sorry you have had a rough time, but it sounds like you are the right track by working on the dietary aspect of this disease. I am also taking Entocort and have so far in conjunction with diet found that I can control the MC. I was diagnosed in April and hope that soon i will be able to taper off of the Entocort

Tex certainly is one of the many very informed gurus here.

Thanks of posting and welcome again

--Joe

[Rosie]

Another welcome, Tanya. You've really been through the ringer over the past year! But you've come to the best place, as there is a lot of accumulated wisdom on this forum. You are on the right track with going back to a gluten and dairy-free diet and Entocort helps a lot of folks too. Hopefully this will bring you healing, but we are all different and sometimes we have to track down additional food sensitivities.

Rosie

[wonderwoman]

This is the first time I have seen this mentioned here

Tex says

Stopping a long-term smoking habit is a common cause of MC. Nicotine is protective of inflammatory bowel diseases, so a cessation of smoking can trigger an IBD. (Of course, the doctors are not likely to tell you that, when they advise you to quit). That may be why your digestive system problems seemed to increase about that time.

I quit smoking several months prior to my very first mild symptoms. I remember telling the doctor that I was loosing weight despite the fact I had quit smoking. It didn't make sense. Almost a year later I was diagnosed with CC.

[Stanz]

Welcome to our family, we have all found different cures to our ills and have been where you are. Do your research, you will find a way to health, it's not the end of the world for you, hasn't been for any of us, despite how desperate we were when we first came here.

No question is too silly or inappropriate to ask, we've heard it all, experienced it all.

[harma]

Tanya also from the Netherlands. Others already provided you with excellent advice. I have one thing to add. I understand from your story, you have an aversions against entocort. Maybe it helps to know that the benefit of entocort (compared to prednisone) is that only 10 - 15% % of the steroids reach the bloodstream. Most of the stuffs works locally in your gut. Of course this doesn't rule out the changes on site effect. But it is not like take prednisone when the full dose ends up in the blood stream.

harma

[mbeezie]

Hi Tanya,

I also had a very bad reaction to a flu shot that started me down this path. My symptoms were different than yours, but the end result was the same, chronic D. Do you know if they checked for mast cells when they took your biopsies? I suspect I have some sort of mast cell problem that was triggered by my vaccine. Doesn't it infurate you that you KNOW the flu vaccine triggered this and doctors try to tell you otherwise? Stick to your story - you are RIGHT!!!

Diet is the best treatment. GF/DF/SF is a great start and then you need to refine it from there - we all have different sensitivites. I also strongly encourage you to get your vitamin D level checked and get it above 50.

Take care,

Mary Beth

[Tanya Lynn]

I would like to thank everyone for reading my story and all your replies.

Tex- I have always told my husband that I was going to start smoking
again but he said that I would have to find a place to live!! Thanks for
all your information. You are right about melanosis coli, that's what the
Dr. said. Tex, I started the Entocort yesterday and didn't have to go
for 10 hours. I almost scared that this medicine will cause me to get
constipated again... I know it's better than going all the time, but the
grugling, rumbling, and pain is still going on. I don't know if I should
take only 2 pills to start off with... Any suggestions?

Mary Beth- I read your blog last night and noticed that I don't live far
from you... Thanks for your concerns about my Vit. D levels. I did have
a thorough blood test in Feb.10, just after this happened and my Vit. D
levels were 30. My PCP, a new one, put me on 5,000 iu's of Vit. D 3.
also my B-12 levels were low as well as my magnesium levels were low.
I'm taking B-12 shots weekly.

Everyone else thanks for the big welcome and I'm so happy to have found
this site...

Hope everyone has a great weekend.

Tanya

[tex]

Tanya,

Please don't take my comments as a recommendation to resume smoking again. The problem is that the process is not reversible - once MC is triggered, it is with us for life, and smoking will not prevent the disease from being active, after the genes that predispose to it have been "activated".

Most people with MC require the full 9 mg daily dose for Entocort EC for 6 months to a year, before they are able to successfully taper the dose down, and eventually control their MC symptoms by diet alone. However, a few people find it to be so effective, that they can get by with a smaller dose, (and, in fact, a higher dose may cause bothersome symptoms, such as dizziness, balance issues, blurred vision, etc. Harma, for example, started with a daily dose of only 3 mg, (1 capsule), of the European equivalent of Entocort EC, (Budenofalk), and that dose works fine for her.

If you should develop C, or notice any neurological symptoms, it might be a good idea to lower the dose, to see if a lower dose will still maintain control. If it will, then, there is no point in taking more. We all react to medications somewhat differently, and so a few of us have to modify our dosage rate, if we happen to be more responsive to a drug, than "average". It sounds as though you might be more responsive to budesonide, (the active ingredient in Entocort EC), than most of us. It will probably take a little more time for all of the symptoms to settle down, but they should slowly improve, as time goes by.

If I were in your shoes, I might consider trying to reduce the dose, since you had such a fast response, (especially if you should develop C). In fact, if you develop C, you might have to discontinue the Entocort completely, until the C resolves, and then start back with a lower dose. Your body will certainly let you know, if it needs a higher dose - the D will quickly return.

Good for your PCP. He or she seems to be doing an excellent job of looking out for your vitamin needs.

Thanks for the update - I hope you have a great weekend, too.

Tex

[ant]

Dear Tanya

Welcome from Hong Kong! This is the truly the best place to learn, share understanding and support.

but the grugling, rumbling, and pain is still going on

. When I first started on Entocort these were my symptoms for about five days before they started to calmed down.

All the best in your journey back to wellness, Ant

[Joefnh]

Tanya, just echoing what Ant stated it does take a week or 2 for the Entocort to calm those symptoms down in most of us. Certainly stick to a diet that avoids the foods that are bothering you, which for most of us is Gluten Soy and potentially dairy.

Best wishes Tanya and thanks for joining

--Joe

[Tanya Lynn]

Tex, oh no, I would never start back smoking. It's been 6 six years and
I am the worst reformed smoker. I've always known that whenever
I quit smoking my stomach problems got worse.

I only took one Entocort this am and by 11 am I was in the bathroom crying. So, I took another pill and it seemed to help the D. I will start with taking 2 a day and with going GF/DF, hopefully in a few weeks I notice some relief.

Joe and Ant, thanks for ya'lls advice and a nice welcome.

Thanks everyone!!!!!!

Tanya

[kimtg68]

Welcome Tanya. You have just found the best resource any of us could hope for here. I was lucky to find this place fairly soon after being DX with MC. All here has been very supportive and helpful. I know you will learn loads of helpful information here. I hope that you find some relief soon. Sounds like your current doc is doing a good job. I wish you luck in finding remission as well. Looking forward to hearing from you again.