Joannas Medical Profile

[harvest_table]

For well over a year I experienced symptoms of chronic D, along with severe muscle and joint pain, fatigue, depression, loss of appetite and weight loss before I was DX with CC in March 2004. I was just very happy to have a name for my illness at that point.

3/04 First med my GI put me on was Asacol which made me very sick within a few days. He then suggested Sulfaslazine which also within a short time made my symptoms even worse. I was close to going to the ER- my body just did not like these meds.

GI then suggested Prednisone since things were so out of control and I needed relief. I took it for 2 months and found relief instantly- within a few weeks was having normal bowel movements, better appetitie, less muscle and joint pain and I just felt like a million bucks. As with many, my symptoms returned as soon as I went off the Pred so I began controling the D with Lomotil 3 times a day. Lomotil worked well. I did not really have any snoticable side effects from using Pred. for 2 months.

Next med he suggested was Colazal which I started and again it made me worse. During this time I'm also entertaining trying dieting because meds are not doing the trick for me.

7/04 Started GF diet along with Entocort and started feeling better right off the bat. GF diet not to hard since we hunt, fish and and eat off the land. Just going back to basics, minus the breads and a few other things.
Also during this time started noticing the Paleo Diet and reading up on that.

9/04 Still taking Entorcort and dieting. No symptoms to speak of all and feeling great. Dieting is hard- I'm missing things like pizza, cookies and all those things that contain lot's of gluten but finding lot's of information and support online in the GF Kitchen. My goal, is to wean off the Entocort within the next couple months with hopes that my diet will control my symptoms.

10/04 Started weaning off Entocort from 9mgs to 6mgs.

11/04 Down from 6mgs to 3mgs of Entocort. Still dieting. Losing weight and feeling good.

To be continued...Joanna

[harvest_table]

update 12/04

Bye Bye Entocort Saftey Net/Hello GF! I'm gluten intolerant, I'm quite certain Have been GF dieting since June. I really did not know if I was gluten intolerant since I have not had Dr. Fines tests done and because I started taking Entocort at the same time I started the diet. I was so sick with major D, muscle and joint pain, fatique and depression when I started the med/diet combo. I started feeling better right off the bat and have been living symptom free and feeling great.

Have been weaning off the med very slowly with hopes of controling my symptoms long term with diet alone. Recently weaned to 1 pill a day and the "hidden gluten monsters" attacked my body. Some suttle muscle and joint pain is back and I had D a few days ago for the first time in months.
I'm reacting to hidden gluten- to my surprise, the flourless bread I've been buying for months has wheat in it- the imitation crab I ate a few days ago had wheat starch in it. I've been very committed to this diet from the onset and have been eating what I believe to be safe foods however, I now know I most likely have been taking in extra gluten and probably had no reactions because of the Entocort.

I'm afraid of losing my :saftey net: (entocort) as I'm weaning off this med. I realize I'm heading into new territory going it on my own with this diet alone and this scares me. I just don't want to go back there but what encourages me is all the MC folks that are dieting and living symptom free. The support from all the folks here is incredible and the information here has been invaluable in my recovery choices.

Gluten is in so many products and I have not been reading labels well enough. That is going to have to change. Experiencing these recent symptoms was like a slap in the face and makes me realize that I'm going to have to take a much more focused approached to manage my diet.

Plan now is to remain of 1 entocort a day for the next few weeks at least, stay focused on my diet and READ LABELS. Sure hope my symptoms stay at bay as I'm in the final stages of weaning off this med totally.

Weight loss- in total, I have lost about 30 pounds since starting the GF diet 6 months ago. Have always been a walker but just started Pilates for some additional exercise. The fat is burning off me, I had it to lose so I'm not to worried.

to be continued. Joanna

[harvest_table]

This is a journal/diary which I started on Sally's board and transfering here.

12/9/05

Took my last Entocort on new years eve with a resolution to remain med free if possible. Day 9 without the med and no change so far in my bowel movements- Norman still visiting. Notice some muscle stiffness starting so started taking glucosamine and a super omega complex since a few folks seem to be taking it regularly.

12/19/05
Going dairy free and see if this helps with my muscle aches and stiffness.


2/5/05
Day 36 without meds- dieting only and doing well. Have been dairy free for a couple of weeks now and notice considerable improvment in muscle and joint aches. My BM's are holding their own so far but notice gas, depending on what I eat.. I seldom had gas while I was taking Entocort. Other than the gas I feel pretty good. This is amazing, to be able to have control over my body and MC symptoms simply by what I choose to, or not to eat. Still losing weight, but not worried about it.

2/21/05
Day 52 without meds which is 4 days shy of the *8 week marker* (marker in which most folks MC symptoms return after stopping Entocort) and it looks like I'm controling my symptoms with diet alone. I find this very motivating and satisfying. Still diary free- I seem to react to it.

Of late, I have alot of tummy rumbling- especially after eating or drinking and I seem to have alot of gas. Haven't really connected it to anything specific I'm eating yet. I'm still pooping properly, for the most part. My stools sometimes are softer but no D. In fact, I have not had a bout with D to speak of since starting the diet. I started the Entocort at the same time as the diet though and I'm certain the med gave me the immediate relief and now it looks to me like the diet has taken control! Sure would not be where I'm at today without the support of this great group of MC'rs. Feeling so thankful for this place.

That was my last post on Sally's board.

Fast forward update-11/29/05
Doing very well in the MC department. I have my symptoms under control and feel great as long as I stay aware of what I'm eating. Dieting is a journey for sure and over the last few months I have tested myself with certain foods that I don't eat anymore and notice I react to Gluten everytime- it's off my list forever but some things like a spot of milk in my tea on occasion I seem to be okay with.

So I've eliminated for the most part, from my diet gluten, soy, casin, dairy, all grains and refined sugar. Eating lot's of protein - feel best when I eat it with each meal. I've learned to really enjoy eating again and have regained my health. As well, since starting the diet 18 months ago I have over 50 pounds. That's a good thing too!

Hope this helps someone. There is light at the end of the MC tunnel and with time you will find the right treatment for you. Just don't give up.