After lots of thoughts, research, prayers, asking other’s opinions, etc…..I have decided to add the 6-MP (talked about in my previous post) to my list of drugs.
After talking with the GI’s office some more, I feel like I can add this in and give it a try. (anything to avoid surgery at this point).
If I don’t like it, or I feel it isn’t working, or my blood/lab work gets crazy…..I will discontinue it.
So please keep me/us in your prayers.
Showing posts with label bowels. Show all posts
Showing posts with label bowels. Show all posts
Wednesday, March 6, 2013
Tuesday, August 21, 2012
Crohn's disease and Gluten Free
I have decided that I really want to track my progress and disease on my blog. So that I can keep up with what is going on and look back on my progression, or series of events. But also so that if I can help anyone else through this battle of Crohn's disease and going Gluten Free, I can. Please feel free to share my blog address with anyone who you might think would be interested.
I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.
This is my personal experience thus far:
I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.
I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.
This is just what I am doing right now, as recommended by my GI specialist.
Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.
I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.
NO POPCORN.
As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.
Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.
www.Allergyfreegirl.com
http://www.katzglutenfree.com/Default.asp
http://glutenfreehomemaker.com/
https://sugarandspicemarket.com/
http://betterbatter.org/
http://www.glutenfreesaver.com/
If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.
I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.
I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.
This is my personal experience thus far:
I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.
I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.
This is just what I am doing right now, as recommended by my GI specialist.
Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.
I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.
NO POPCORN.
As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.
Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.
www.Allergyfreegirl.com
http://www.katzglutenfree.com/Default.asp
http://glutenfreehomemaker.com/
https://sugarandspicemarket.com/
http://betterbatter.org/
http://www.glutenfreesaver.com/
If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.
I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.
Tuesday, May 29, 2012
medical follow up appointment/Crohn's Disease
Today was the follow up for all of my lab work, colonoscopy, scans, etc over the last few weeks. To say that I am overwhelmed, would be the truth.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
Subscribe to:
Posts (Atom)