Introduction......

[Canadian Karen]

"Polly":

Gotta run, but looking forward to further chats. Would love to hear more about your kiddies (I'm a pediatrician, what can I say? - LOL!). I can't imagine how you take care of 4 youngsters with your health/diet problems. You must be a superwoman!!!

Love,

Polly

LOL! Sometimes I feel that I need to be Superwoman to keep up!



Eileen is 12 yrs old. She is an extremely "strongly built" child. She has the build of my sister and me. Very tall, big boned, strong bone structure, solid as a rock! At 12, she already has a Ladies Size 11 foot and is 5'9" and weighs 160 lbs.

Rhiannon by contrast, is the tiniest, most petite little procelain doll that you have ever seen. She is 7 yrs old and weighs 49 lbs. She had her problems much like I did when I was a child (she had severe constipation to the point of being impacted twice, same as I did when I was a child. The irony, eh? LOL!) Also, at age 2, she lost most of her hair (which eventually grew back, but instead of the previous curly it was now very straight.) I have had the girls tested for celiac, but came back negative. My biggest concern is the lack of reliability of testing in children. Too many false negatives..... In my heart, my gut feeling is that she has celiac disease, or if not yet, she will be the one to develop it later in life as I did.......

My boys, well, they came "a bit" early! LOL! They arrived at 31 weeks gestation, weighing 3 lbs. 12 oz. each. Fortunately, I broke my water on a Thursday, got rushed down to Mount Sinai (NICU equipped), but didn't actually go into labour until Sunday. They gave me the steriod injections in the butt to boost their lungs, and when they were born, everything was fine, they just needed to gain weight (just over 3 weeks in hospital, and they were out.) By age 2, they had caught up on all their milestones (took them every three months for the consultations to make sure they were progressing.....) Boys are totally opposite, Daniel is sweet, bashful, Connor is hell on wheels....... Daniel has brown hair, Connor has more blondish hair.... Personalities couldn't be more opposite..... They absolutely adore each other though, they can't be without each other.... They are each other's best friend.....

So yep, I guess I need to be superwoman sometimes. It's not as bad now, I have been off on disability for almost a year now, so I can be home and do things (laundry is almost a full time job in my house!) during the day. The boys are in JK, and they go full day, every other day, so I do get my days that I can rest and gain some strength. Before I was on disability, I worked full time for Children's Services for the City of Toronto. Working full time, having four young children, and having the medical issues that I have, had taken it's toll on me though. Terry (my husband) and I decided to sell our house in the city and move out to the suburbs (about 45 minutes from Toronto), where we bought a comparable house but much, much cheaper so it would make it easier for me to be able to stay home. My health was seriously declining very rapidly..... radical decisions had to be made.

It turned out to be the best move we ever made. We love the small community feel in the town we are in, great community to raise our children, and yet still very commutable (Terry is a Grade 3 teacher in the city - so the 45 minute commute is no problem for him.

I forgot to mention, my CC is VERY nocturnal. It wakes me up around 2 or 3, is VERY active for about 2 - 3 hours with abdominal cramping and 5 or 6 explosive bm's, then calms down around 6 a.m. (just in time for everyone to get up! LOL) I know this is a major factor in my feelings of exhaustion and fatigue. I make sure I don't eat after 5 pm, but it doesn't make any difference - it just loves to keep me awake!

Sorry I have rambled...... LOL! Hope everyone has a wonderful Mother's Day!

Hugs.
Karen

[Maureen]

Well, better late than never: WELCOME, Karen!

I am 40 years young, Married 19 years and have 2 wonderful teenagers (no, really they are) my daughter is 16 and my son is 14.

I was diagnosed with Collagenous Colitis when I was 37 and I have been in remission for over a year and a half now.

I tried the Pepto Bismol 9 tablets/day for 8 weeks and I was also on Asacol I think it was 4800 mg/day (3 tabs, 4x/day) I also eliminated all raw fruits, veggies, dairy but I did not give up gluten (I do not have celiacs, or a sensitivity to gluten)

Best of luck to you, I can really feel your pain.....
I'm going through a real rough patch with migraines right now...I am taking a short course of prednisone to break an 5 day non-stop migaine..........

This group is the best!
Love,
Mo

[moremuscle]

Hi Karen,

Welcome to the site, to the group, to the board, to the family - whatever!

I agree with those who have suggested to you that you are likely to be intolerant of other foods/items in addition to gluten.

Just a little about myself in case you can find anything that inspires you:

I have several food intolerances - one of them is gluten. I did not get well after eliminating gluten from my diet. It took more than that but I have now been symptom free for more than a year w/o ever taking any medication for my MC.
During the time of making decisions to eliminate other foods and learning how to eat and cook w/o those other foods I often doubted that I would ever get well. The only reason I kept believing it was that I was in daily contact with the folks in this group that were living symptom free via diet alone. They taught me everything I needed to know in order to get a grip - after that I have not needed to see a doctor in relation to my MC. I am simply not sick; I can do anything I want (except eat things I am intolerant of).

While my MC was active the main symptom was explosive diarrhea - sounds like you have a lot of that too?!
Mine was nocturnal as well as all other times of the day.

Casein (all dairy products) was the second item I eliminated (after gluten). The third item was soy - my system is extremely sensitive to soy - soy caused major out of control diarrhea in me.

I also avoid corn and corn derivatives -

Have you ever heard of Enterolab? You may not be interested in testing for other food intolerances but if you are you would probably want to look into what Enterolab offers.

Karen, it's great to see you in this group - I hope you will find lots of support and help here; it is such a wonderful group of people with a huge amount of experience and empathy.

Love,
Karen

[harvest_table]

Hi Karen,

Welcome to the Potty People! This is indeed a super group of caring folks with alot of experience and willingness to share in order to help you find success in managing your MC symptoms.

I was DX with CC 2 years ago and found these folks at that time. They have nursed me through various medications, medications and diet and for the last 16 months I have been controling my CC with diet alone. There is a light at the end of the tunnel! Promise.

Just keep the faith!

Love,
Joanna

[thedell19]

Karen,

I don't understand the logic in what your doctor is saying. Those are all inflammatories, as is Prednisone. Asacol and colozal are brand names for mesalamine, which is believed to be the active ingredient in sulfasalazine. The only immune-suppressants that you named are Entocort and Prednisone.

Entocort is a brand name of budesonide, which is a corticosteroid, as is Prednisone, a brand name of prednisolone. The primary difference between prednisolone and budesonide, is that prednisolone is a systemic medication, (it is absorbed into the bloodstream in the duodenum and jujenum), which means that it affects your entire body, whereas budesonide, (Entocort), is a targeted drug, which is not absorbed until it reaches the lower third of the small intestine, (the ileum), and the colon. Compared with Prednisone, Entocort greatly reduces the chances of it getting into your bloodstream and playing havoc with other organs.

All corticosteroids, however, after a while, tend to cause the adrenals to cease production of hormones that regulate body processes, which is why they cannot be terminated abruptly. Prednisone is much more likely to cause long-term problems than Entocort.

Prednisone is a powerful immune system suppressant, as are all corticosteroids. Again, prednisolone appears to be more likely to cause long-term damage, than budesonide, due to it's increased absorption rate into the bloodstream.

I assume that he is only testing for gliadin antibodies, by means of a classic celiac blood test. A stool test provides much more accurate information about antibodies produced by the digestive system.

What he says about going to cancer medicatons bothers me somewhat. I wonder what sort of cancer meds he is referring to? There are a lot of them. Prednisone, for example, is one of them. I'm not sure if he is misleading you intentionally, or through ignorance, (surely not), but he seems to be misinforming you about what these meds are designed to do. I hope that this isn't true, and that I'm just misunderstanding what you are sayng.

Wayne

Tex-

The cancer meds he is probably talking about it a low form of chemo which is commonly used in UC and Crohns. The two brand names of those meds are 6mp and Imuran. The usually work wonders for people with UC and MC and they rarely flare while on these meds. However like everything else you must be careful; with these drugs you have the change of ruining your pancreas (sp?) and liver. They monitor your blood every so often to make sure you are okay and if they find blood levels are too low or high they usually lower the dosage or switch to the other immunosupressant (either 6mp or Imuran). I am very surprised you didnt know about these meds as you know so much about the subject.

And Karen- Asacol, Colazal and Pentassa are good meds to help control the inflammation and I would recommend you talk to your doc about pentassa since it soothes the entire digestive track and not just the lower small intestine and colon. I believe that might be a good choice for you since you mentioned your small intestine was inflamed a bit.

You can also find out some more info on inflammatory bowel disease at www.healingwell.com another forum. But I find this forum knows the most about MC.

Have you tried probiotics yet? If not iFlora contains no allergins and has some very powerful strains of bacteria that will help takeover the bad buggers in your intestines. Let me know if you want more information about probiotics as I have researched them more than anyone on either forum I think. I call it my specialty.

[artteacher]

Hi C.K.,

You already have so many "welcomes" here that I wasn't going to add to all of it, but when you mentioned that you have nocturnal "D", I had to jump on board. These are the nicest people in the world here, I'm so glad you found this site. Honestly, they saved my life. Thanks guys . . .

My name is Marsha - I'm 50, three kids 23-27 + stepkids 27-30, 4 grandkids. I live in Arizona and Washington state, am a retired teacher. I "had" lymphatic colitis which the doctor can find no signs of now, so according to him I'm cured. I have also had lupus, which is no longer in evidence according to my blood tests. I am much better than I was 5 years ago. BUT I can induce LC any time I want by eating dairy, wheat, eggs, beans, beer/wine, or rice. Some soy products are ok, most are not. I control symptoms by diet, and Caltrate calcium twice a day before meals. I eat meat, non starchy vegetables, fruits except banana, tapioca/potato/yam (root starches but not grains). Whew . . .

One of the most recent and important lessons I've learned about MC is that (for me), waking up at night is a sign that I've eaten a trigger food. Even without "D" or stomach rumbling or pain, just that fact that I don't sleep through the night is a result of eating gluten or any trigger.

So, I just wanted to encourage you. I think when you get all your triggers figured out, or get on a medicine that helps you, you'll regain the ability to get a good night's sleep. It CAN happen.

Marsha