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PaigeP · Post by **PaigeP** » Tue Jun 29, 2010 9:29 am

Hi all.
I just joined PP, due to a very nice email I received from a member who stumbled upon my blog about collagenous colitis. I was diagnosed about 2 and 1/2 months ago and am on Entocort to treat it.
I know Entocort is supposed to have little to no side effect, but I swear I can feel it suppressing my immune system. It makes me feel tired all of the time. However, generally, I am symptom free. There are occassional flare ups, but I deal with them.
I'm 31, so it's shocking to me that I have CC, as I refer to it. I also fractured my hip around the same time and had to have surgery and screws, or "pins", put in, for that. That is also rare for someone my age, but probably attributed in part to the CC.
Anyway, I'm fairly frustrated to be dealing with these matters but I'm seeing a doctor who is trying to figure out this puzzle. He has ordered some blood work and a bone density exam, and suggested trying Probiotics in the meantime.
Anyway, I just wanted to introduce myself. I'm happy to be a part of the group!
Paige

JLH · Post by **JLH** » Tue Jun 29, 2010 9:50 am

Paige, I'm glad you joined our family. This is the best place in the world for information and support.

I never took Entocort or one of the 5ASAs because I found the PP and used diet alone.

Post by **tex** » Tue Jun 29, 2010 10:25 am

Hi Paige,

Welcome to our internet family. I'm sorry to hear that you're having to deal with all this at the same time - those are both tough problems, let alone having to deal with them both at the same time. The bone issue strongly suggests celiac disease, of course, so I hope that the appropriate tests for celiac disease are a part of the blood tests that your doctor has ordered for you.

Osteoporosis goes hand in hand with celiac disease. It is possible, (in fact, it's quite common), to be gluten-sensitive, even with negative results on the celiac blood tests, however, so please don't give up on pursuing this issue, (because it's extremely important to stop the progress of any bone degeneration, ASAP). The celiac blood tests are notorious for false negatives. You can get a stool test at Enterolab that is several orders of magnitude more sensitive, reliable, and accurate, than the blood tests, for determining gluten sensitivity.

Again, welcome aboard,

Tex (Wayne)

Ginny · Post by **Ginny** » Tue Jun 29, 2010 10:48 am

Hi Paige, welcome to the family. You will find lots of useful information and many methods to help you get well. Ask questions and remember that we all have to find our way and to be patient (not easily done). For myself, I take Entocort and a very restrictive diet which has helped me to keep on functioning at work and at home. There are other young people as well in this group and hope they respond when they have time.

Ginny

Linda in BC · Post by **Linda in BC** » Tue Jun 29, 2010 12:35 pm

Hello, Paige. :manynanas:

and welcome to the best darn colitis ( MC and CC) site around. We call it CC too.
I am no expert and still a relative newbie here (though not a newbie to MC) but from my understanding of some people's experience and my own with probiotics, don't be surprised if they make matters worse. It depends on the individual and probably the type of probiotics. Maybe someone who has had luck with them can tell us what kind they are using... ?
Feel free to ask any questions you may have. Someone will probably know something about it ( most likely Tex !)

Linda

Joefnh · Post by **Joefnh** » Tue Jun 29, 2010 4:12 pm

Hi Paige welcome to the site. I had just started entocort last April and it does at least for me had an initial effect of making you feel somewhat tired. I found that dissipated within about 4 weeks.

Best wishes

--Joe

Gabes-Apg · Post by **Gabes-Apg** » Wed Jun 30, 2010 2:20 am

Hi Paige

greetings from my homeland - Australia, but i am currently in France for work purposes. (yep you can travel internationally with MC and survive!!)

I am 40 years of age, diagnosed when i was 40 and based on discussions on this forum, i am pretty sure i have had symptoms since i was about 36. the symptoms are definately 'whole of body' and not just digestion.

Adjust to life with MC, figuring out what treatment management plan works best for you is hard work (i wont lie or gloss it up) it takes time, and patience. I was diagnosed just over 6 months ago, and with my management plan working pretty well, i have managed to travel to france for work purposes. this involved a transit of over 30 hours.

my theory with mc is take each day as it comes, some days are diamonds, some days are stone.
there will be changes and adjustments you have to make and life will be slightly different to what it was pre MC.

you have a found a wonderful 'family' that are knowledgeable, kind, caring, and giving. Feel free to ask any questions as i can guarentee at some stage at least one of us has experienced the same thing

the search function for looking up topics is great
and if you embrace diet/ingredient management then Dee;s kitchen section is a fantastic resource to cooking to suit MC

take care
good luck absorbing all the inforamtion about MC

mbeezie · Post by **mbeezie** » Wed Jun 30, 2010 10:29 am

Welcome Paige!

Sorry to hear you are stuggling with CC and osteoporosis at such a young age. I encourage to explore the site and look at some of the diet information that has been posted. Most of us have found that diet is central to managing this disease.

Hang in there!

Mary Beth

harma · Post by **harma** » Wed Jun 30, 2010 12:50 pm

Hello Paige, glad you find, great friend you have!!

Must be quite difficult, 31, being diagnosed with MC and a broken hip. Of course MC we know all what it is and over time we all learn how to deal with it. But a broken hip, sounds real serious with pins and screws. This it broke "spontaneously" or was it due to an accident? I hope you are walking again and the healing progress goes well.

Try to get a bone density scan asap. It is not uncommon MC and bone loss density, also on younger age.

Well take a look around here, soon enough you will find out beside medication there is an alternative way to treat this disease, food change. A lot here (including myself) are doing very well on a gluten and milk free diet and about half of us also avoids soy. A minor group (including me) also avoids yeast, eggs and corn.

And feel free as many question as you want!

harma

Post by **Rosie** » Wed Jun 30, 2010 1:50 pm

Welcome, Paige. I don't have a lot to add, just that this forum offers genuine hope for getting control of this life-altering disease. I'm a year into controlling my LC by diet, and feel pretty good...not completely normal, but I can enjoy life, and don't feel restricted by the disease. I've adjusted to the dietary restrictions, and have found a lot of foods/recipes that I truly enjoy. It's a process, but a necessary one....... Each of us has to find our own way, as the individual responses can vary. But there is a lot of accumulated wisdom on this forum, so explore!

Rosie

ant · Post by **ant** » Fri Jul 02, 2010 7:48 pm

Dear Paige

Welcome to this wonderful family. Dealing with the hip and CC must be very difficult. I feel for you.

As Tex and Harma have said there is a link between Celiac disease and Osteoporosis (and there is growing evidence of links between MC and Celiac), so it is well worth having the density scan.

Here is a thread on MC and Osteoporosis

http://www.perskyfarms.com/phpBB2/viewt ... teoporosis

Wishing you all the best on your journey to better health, Ant

PaigeP · Post by **PaigeP** » Tue Jul 06, 2010 2:38 pm

Wow, I just wanted to say thank you so much to everyone who replied. This is such a warm welcome, and I feel like I have a lot of new information to look into. I wasn't given any other options by my doctor, so this is really great.
Again, a great big thank you from me to you all. I so look forward to learning about you all and about managing this disease!

kimtg68 · Post by **kimtg68** » Wed Jul 07, 2010 12:24 pm

Paige, this place is full of loads of information and the ppl are incrediably supportive and helpful. I'm sorry you are dealing with CC and your hip. I hope that you will be able to find direction and support through this forum. Good luck.

PaigeP · Post by **PaigeP** » Wed Jul 07, 2010 12:52 pm

Harma, to answer your question, I didn't have any kind of accident or fall. It just broke. It was a stress fracture, and I did have low vitamin D, and had been running/jogging 3 times a week plus carrying around a 24 pound toddler. And who knows how long I'd actually had the CC before the diagnosis. So, all those factors probably led to the stress fracture in my hip.
I find out Friday the results of my bone density scan.

JoAnn · Post by **JoAnn** » Wed Jul 07, 2010 1:59 pm

Welcome, Paige, I'm sorry you're dealing with so much right now, but you have found the most wonderful place to find help and healing. Getting on the diet and sorting out your food sensitivities is the best thing you can do. I'm managing my mc with entocort and diet. I think I had major gluten damage before I was diagnosed and am slowly healing. Time, patience, and a lot of trial and error are the keys to remission. Good luck on your journey, JoAnn

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