New member with question

[Rachel]

I am a new member. I'm not sure how to post a question, so I hope I am doing it correctly. I was diagnosed with MC six months ago. My watery diarrhea stopped about the time I had the colonoscopy that was used to diagnose MC. Since then, I have not had diarrhea, but have had severe abdominal pain. My doctor has had me on Entocort for four months, along with dicyclomine for the cramps. The Entocort was supposed to be "curing" the MC which the doctor said is caused by taking something that irritated the lining of the colon. The cramps aren't as severe as long as I take the dicyclomine, but still there is pretty constant abdominal pain with soft bowels but not diarrhea. Up until the day the watery diarrhea started, I had been fully constipated for years--no bowel movement without Milk of Magnesia. Everything I read about MC talks about diarrhea and none of it mentions cramps. I often start to doubt I even have MC, then I remember I was diagnosed with it--it wasn't just somebody's guess. I am discouraged and am tempted to quit taking all medications. When I read posts on this site, though, I think I am pretty lucky not to have diarrhea. I don't have joint pain, I do have fatigue, and I have blurry vision and painful eyes. The painful eyes have been diagnosed as corneal dystrophy, but I don't know what that is either except severe dry eye. As you can see, I have a lot of confusion.

[MBombardier]

Welcome to our internet family, Rachel! I am sorry you have MC, but I am glad you found us. There are a lot of wise, knowledgeable people here (of whom I am not one, lol) and I know someone will be along in a minute to answer your question.

Welcome again!

[Rachel]

Thank you for the welcome. That was awfully nice of you!!!!

[tex]

Hi Rachel,

Welcome aboard. We have quite a few members whose symptoms alternate between D and C, (including myself), and we have one or two members who have never had D, but are troubled with C, instead. The disease can present in many variations. I would guess that the odds are very good, that most people who do not have D, don't get diagnosed, because even if they were to go to their doctor and complain about it, who's going to suggest a colonoscopy exam, costing 5,000 to 10,000 dollars, just to diagnose constipation? I know that if my symptoms hadn't turned into D, that refused to stop, no matter what I did, I probably would never have gone to see my doctor about it. FWIW, before my symptoms started, (well, my real symptoms, anyway), my default BM mode was C.

There are quite a few eye issues, (mostly autoimmune diseases), that are known to be connected with MC. Several of us here, for example, (including myself), have an eye condition known as drusen, which is probably linked.

Incidentally, the members who do not have D, or who have minor D problems, usually complain of cramps. I also had major problems with cramps, during certain stages of my reaction cycle. Sometimes when they would suddenly hit me, they were so severe, that they would cause me to double over, and they would almost bring me to my knees.

Again, welcome to the board, and please feel free to ask anything.

Tex (Wayne)

[JLH]

I have severe dry eyes even with Restasis. I think the computer makes them worse.......

[ant]

Dear Rachel from Asia

Wishing you all the best in getting to remission.

Best, ant

PS

the doctor said is caused by taking something that irritated the lining of the colon

Most of us here would guess that "something" is a food intolerance or food intolerences.....

[Zizzle]

Welcome Rachel,
I also experienced a temporary remission after my colonoscopy. I figured washing out the unfriendly mix of bacteria was the reason for the improvement. But eventually they grew back, perhaps in worse proportions of friendly to unfriendly. How soon after the colonoscopy did you start the Entocort? Could that be causing the C? Perhaps you could consider cutting down the dose to see what happens? I know before I discovered my food intolerances, if I took Immodium I would get terrible cramps, bloating and constipated feelings. I believe they were because my colon was desperately trying to "wash out" the offending foods. It felt much better to have D and get it all out. Just a thought...

Welcome aboard.

Zizzle

[connie]

Hi Rachel, I'm sorry you are feeling discouraged. I think probably everyone would admit to some discouragement when they are trying to get back to feeling well again. Just like you I had a lot of abdominal pain in the beginning. I was put on Entocort and Dicyclomine. I didn't get as much relief from the Dicyclomine as I did from a combination of Entocort and Pentasa. However, we all have very unique bodies and the effects of medication are different for all of us. It may take a while to find the best combination for you. Again, we are all different but I wonder if you would benefit from some diet changes since you are having abdominal pain. Most folks here are gluten intolerant and many don't eat dairy or soy.

As you can see, I have a lot of confusion.

Oh my dear, you are entitled to your confusion. I doubt you had heard of MC prior to being diagnosed. The only chance to learn from folks with MC is on this board. (I haven't met another MCer in person) Read as much as you can here.
Lastly, I don't want you to feel alone. My MC started with constipation and then suddenly became diarrhea. The Entocort helped with the diarrhea but the abdominal pain is something I can really understand. Hang in there, you will get your life back.
Connie

[TooManyHats]

Welcome to our little family! I did have cramps, and sometimes still get them if I eat something I'm intolerant. My biggest problem right now seems to be getting rid of soy, which I seem to find hidden in everything. You will eventually find what works for you. I hope that time comes soon!

[Rachel]

Thanks to all of you who responded. I already feel better just knowing I'm "normal" for someone with MC. After what some of you said, I realize I need to stay on the medication and I need to take a closer look at what I'm eating. Since this hit, I have been eating a lot of yogurt, and I have been craving pickles, ketchup, and ice water???!!!! I don't eat dairy or soy, except what is in cooked things that I'm not aware of. I don't eat much bread, but that may be bothering me when I do. I will be more careful. Thank you, thank you to all who repsonded.

[Rachel]

Zizzle, did you ask if the entocort might cause Constipation? or Cramps? I'm not sure which C refers to. I started the Entocort about two and a half months after the diarrhea started; it was about 5 weeks after the colonoscopy (the diarrhea stopped about the time of the colonoscoy) when I started the Entocort. I guess i will try the diet everyone recommends: no gluten, soy or dairy. I'm pretty much there on the soy and dairy. The gluten, I understand, is in everything; so, I'll start looking for it. I would like to get to the point where I'm not taking medication and I'm just quietly dealing with any lingering symptoms without having to think about it or talk about it. You all are helping me understand it, and that's more than half the battle, I think.

[Rachel]

Is yogurt considered dairy that should be avoided?

[tex]

Is yogurt considered dairy that should be avoided?

Yes, unfortunately, it is not just the lacteose in dairy products that bothers us, many of us are also sensitive to the casein, (the primary protein in milk), and yogurt contains a very high level of casein.

Tex

[Linda in BC]

Dear Rachel:
WELCOME to our internet family. Sorry you had to find us though.

Yes, it's ridiculous that most of the information on MC never mentions cramps, when for many of us, painful cramps like Tex described, are often the norm. I was lucky in that for many years that I had MC I didn't have pain. But in the last year I have encountered a few foods that will put me onto my knees with bad cramps, too. Quinoa is one of them. The cramps are always caused by something that I eat, and it happens pretty quickly after I eat it, so if you are still getting the cramps even on the Entocort, I suggest maybe you start to observe what you ate just before you get them ( and avoid after .)

Quitting the Entocort is probably not a good idea, but if your gut irritation is caused by foods you are eating ( and most of us have found that ours is) Entocort will not be able to "heal" you as long as you keep eating those foods. they are most likely gluten, dairy, soy, maybe corn and eggs and some other foods that vary with the individual like nightshades ( tomatoes, green peppers, eggplant) legumes ( like peanuts, beans and peas ) or even certain veggies or meats. At best it can hold the symptoms at bay while you take it, but they will return with a vengeance when you stop. I know your doctor told you the entocort should heal you, but mainstream medicine has not yet recognised that food irritants are most often the cause of that gut irritation (they just say they don't know what causes it) , and so they really don't know how to treat it . I was once sent to a dietician and put on high fibre diet! Fibre is definitely NOT our friend.
Anyhow, keep reading lots on this board. There is a wealth of information. You will find your way back to health.

Linda

[lulu]

I am new also, Rachel, but I can already tell you that the "family" here will help you & welcome you with open arms. We are where we are supposed to be, to learn about it, to not be alone with it, and to get better with it. Happy hunting on here, there's lots of info. [quote][/quote]