On May 9th, it will be 1 year since I heard those words that would change my life forever, while sitting in the ER with my Mom.
"Mrs. Schlaht, from the CT Scan results, you have what I believe is Crohn's Disease. You will need to see a GI to do further testing ASAP."
Those words hit me hard and put my life into a spin that had yet to slow down.
I have gone through many types of medicines: Pentasa, Prednisone, Potassium, Entocort, Humira, 6mp, and many anti-biotics.
I have learned to give myself injections.
I have had my first over night hospital stay, which last 3 nights/4 days.
I have been to the ER more times than I can count.
I have had blood work done 2-3 times a month.
I have had multiple testing done.
I have had complications due to the drugs: sinus surgery; 3 root canals and crowns; nausea; vomiting; bleeding; pain - physical and emotional.
I have had partial obstructions.
And most recent, it was confirmed that my stricture in my ileum is scar tissue. We had hoped for inflammation instead, but there was very little.
I have some more testing on the 20th of this month, and then my follow up appointment with my GI on the 30th. From there we will determine the next step. Re-sectioning surgery is VERY VERY VERY high on that list.
It's been a rough year for myself and for Ben, as well as the rest of my family.
I have become an admin on a great FB group. IBD Journeys http://www.facebook.com/groups/ibdjourneys/
I have made some amazing friends that share my same disease of IBD.
I have done the Take Steps for Crohn's and Colitis Walk.
I have learned a lot about myself and my strengths.
Please continue to pray as we pursue the next step in this process.
Thank you to everyone who has been an amazing support system for myself and others with IBD.
Showing posts with label infections. Show all posts
Showing posts with label infections. Show all posts
Tuesday, May 7, 2013
Thursday, August 23, 2012
root canal and GI visit
Well today was definitely an exciting day. (insert sarcasm)
The tooth that was giving me problems a few weeks ago, well it requires a root canal and crown. Today was the first step of that process. Root canal is complete, I have a temporary filling until I go back for the crown fitting and placement.
Anyone that knows me, knows I would rather have my head cut completely off than even step into a dentist office. However, I must admit, I think I found a great dentist this time. He is so understanding to my fears and worries. It didn't hurt at all today. If anyone is looking for a good dentist in the DFW area, look up Sam Koo in Irving. I highly recommend him.
After spending an hour or so at the dentist, it was time to head over to my GI specialist.
It was decided that now that all my infections are cleared up, I am able to go back on Humira. I will start my injections again this Sunday. I am honestly excited to get the ball rolling. I know that I will be down and out for a while, but I have to look at the big picture and pray for remission.
We also decided to go from 20mg to 10mg per day on my Prednisone. This makes me SUPER happy. In the 2 weeks that I have been back on 20mg, I have gained probably 10 pounds and have not been sleeping AT ALL.
I did also learn from some blood work done recently, that my Hepatitis B vaccination is NOT active. The Hep A vac is active, but apparently the Hep B didn't work with me. So I will be doing the 6 month series for the Hep C vac again. How strange!!!
So, that's where I am at today. Fun stuff, right? :)
The tooth that was giving me problems a few weeks ago, well it requires a root canal and crown. Today was the first step of that process. Root canal is complete, I have a temporary filling until I go back for the crown fitting and placement.
Anyone that knows me, knows I would rather have my head cut completely off than even step into a dentist office. However, I must admit, I think I found a great dentist this time. He is so understanding to my fears and worries. It didn't hurt at all today. If anyone is looking for a good dentist in the DFW area, look up Sam Koo in Irving. I highly recommend him.
After spending an hour or so at the dentist, it was time to head over to my GI specialist.
It was decided that now that all my infections are cleared up, I am able to go back on Humira. I will start my injections again this Sunday. I am honestly excited to get the ball rolling. I know that I will be down and out for a while, but I have to look at the big picture and pray for remission.
We also decided to go from 20mg to 10mg per day on my Prednisone. This makes me SUPER happy. In the 2 weeks that I have been back on 20mg, I have gained probably 10 pounds and have not been sleeping AT ALL.
I did also learn from some blood work done recently, that my Hepatitis B vaccination is NOT active. The Hep A vac is active, but apparently the Hep B didn't work with me. So I will be doing the 6 month series for the Hep C vac again. How strange!!!
So, that's where I am at today. Fun stuff, right? :)
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.
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