A. Attached or Single - attached!
B. Best Friend- Ben and my Mom
C. Cake or Pie- cake! yummy!
D. Day of Choice- Saturday mornings
E. Essential Item- My phone or laptop
F. Favorite Color- blues, greens, purples
G. Gummy Bears or Worms- yes please lol
H. Hometown? I'm from Glasgow, KY. I grew up in Irving, TX.
I. Favorite Indulgence- beef jerky. Mainly Robertson's beef jerky
J. January or July - since I have been on Prednisone for a year and a half, I would have to say January since I get hot so easily
K. Kids? No!
L. Life isn't Complete Without- my family
M. Marriage Date- 12/03/11
N. Number of Brothers and Sisters- 1 biological brother, 2 step sisters
O. Oranges or Apples- neither!
P. Phobias / Fears? losing one that I love or having someone I love be chronically sick.
Q. Quotes- This too shall pass. (I tell myself this daily right now, sometimes every hour or minute)
R. Reasons to Smile- I always have a reason to smile. Laughter is the best medicine. I try to laugh a lot.
S. Season of Choice- Spring
T. Tag 5 People- Anyone who wants to do it.
U. Unknown Fact About Me: I have lost a lot of people that I thought were true friends since being sick. It's sad, but its not hard to reach out to someone with even just a few caring words.
V. Vegetable- okra (is that a vegetable?)
W. Worst Habit- smoking
X. Xray or Ultrasound- I have had so many of both in the last year and a half that I swear I glow now
Y. Your Favorite Food- scallops. yummy!
Z. Zodiac Sign - Leo
Thursday, September 5, 2013
Wednesday, August 28, 2013
Surgery (Aug 9, 2013) and post op
Well, now that I had my first post op appt, I figured its time for the full update on surgery and post op.
This may be a long post and graphic, but I want it documented for my own reasons.
My surgery was scheduled for August 9, 2013 at 2:30pm. I had to be there at 10:30am that morning for blood tests and IV hydration. I arrived at 10:30am and was checked in and in the pre op room pretty quickly. I was given an IV and blood draws. And we waited. Me, Ben Schlaht, Mom, Dad, David, and Ben Simmons. I was taken back for surgery around 3:30pm.
so now is where it gets graphic.
I knew that I had scar tissue built up (as it was causing obstructions/blockages) in the small intestine at the terminal ileum. We knew it was bad as a scope wasn't able to go through, what we didn't know is exactly how bad it was. My surgeon pulled all of my intestines and colon out to do a run through to find all the damaged areas. The area that was diseased was described by my surgeon as being "sausage feeling" meaning hard. When he started examining it further, it literally started crumbling in his hands. This is NOT good. Had I put off the surgery any longer, they believe that I would have had a rupture and gone septic, which can ultimately kill you.
Once he started removing portions, the diseased tissue just kept getting longer and longer. I also ended up having a ton of blood loss as the mesentery artery started crumbling as well. I lost a lot of blood. All in all, I lost around 18 inches of small intestine, several centimeters of large intestine, my appendix, and my ileocecal valve. And again, a lot of blood.
My surgery was supposed to last about 2 hours and that time was doubled once they were in there.
Waking up in recovery did not come easy for me. They had a hard time pulling me out. When I finally came to, what my family describes to me makes me cry, but oh so thankful that I made it. I was gray from lack of blood and looked dead. This scared my family a lot.
I ended up staying in the hospital for a full week. I went in on a Friday morning and was discharged the following Thursday evening at 9:20pm.
Recovery has been trying. I had around 20 external staples in the abdomin. I have to sleep in a recliner as I can not lay flat. I still have a lot of surgical pain. I can't lift anything over 5 pounds (even a gallon of milk weighs more than that!!!). I shouldn't be bending over too much. I am only able to drive when I am not taking pain medication. And I sleep. lots. I am currently down 16 pounds since surgery. I have no appetite and have to force myself to eat. I have no energy.
I am almost 3 weeks post op. Most days I feel like I have been hit by a truck. Mornings are VERY hard.
I still have a long way to go. I still have at least 4 weeks of being off work.
My external staples were removed today. I have some non metal type staples that are internal that will stay forever. I am making an appointment with my GI for next week, as I will have to go back on all of my immuno-suppressant meds (HUMIRA, 6mp, etc). It is believed that my Crohn's Disease is VERY aggressive. I will more than likely need to remain on the meds for the remainder of my life.
That is what I have for now. Please please please continue to keep me in your prayers.
Thank you to everyone that has been there for us and reached out to me. I miss people, I miss my friends.
and most importantly, I want to thank my wonderful husband, Ben. He has been amazing. Some of the stuff that he has had to see and do during this, most people couldn't handle. He is my rock.
Also, my mom! She is a God send! I scared the shit out of her more than once. She has been there to dry my tears, talk me off the ledge, drive me to Dr appts, and listen to me when I think I can't do this anymore.
My dad! He drove 13 hours each way to be there for my surgery. He ended up staying about 6 days. He sat at the hospital and helped/talked to me while others had to work. I love him so much and it meant so much that he was able to be here for me.
I would be lost without Ben, my mom, my dad, and David. Thank you all so much!
This may be a long post and graphic, but I want it documented for my own reasons.
My surgery was scheduled for August 9, 2013 at 2:30pm. I had to be there at 10:30am that morning for blood tests and IV hydration. I arrived at 10:30am and was checked in and in the pre op room pretty quickly. I was given an IV and blood draws. And we waited. Me, Ben Schlaht, Mom, Dad, David, and Ben Simmons. I was taken back for surgery around 3:30pm.
so now is where it gets graphic.
I knew that I had scar tissue built up (as it was causing obstructions/blockages) in the small intestine at the terminal ileum. We knew it was bad as a scope wasn't able to go through, what we didn't know is exactly how bad it was. My surgeon pulled all of my intestines and colon out to do a run through to find all the damaged areas. The area that was diseased was described by my surgeon as being "sausage feeling" meaning hard. When he started examining it further, it literally started crumbling in his hands. This is NOT good. Had I put off the surgery any longer, they believe that I would have had a rupture and gone septic, which can ultimately kill you.
Once he started removing portions, the diseased tissue just kept getting longer and longer. I also ended up having a ton of blood loss as the mesentery artery started crumbling as well. I lost a lot of blood. All in all, I lost around 18 inches of small intestine, several centimeters of large intestine, my appendix, and my ileocecal valve. And again, a lot of blood.
My surgery was supposed to last about 2 hours and that time was doubled once they were in there.
Waking up in recovery did not come easy for me. They had a hard time pulling me out. When I finally came to, what my family describes to me makes me cry, but oh so thankful that I made it. I was gray from lack of blood and looked dead. This scared my family a lot.
I ended up staying in the hospital for a full week. I went in on a Friday morning and was discharged the following Thursday evening at 9:20pm.
Recovery has been trying. I had around 20 external staples in the abdomin. I have to sleep in a recliner as I can not lay flat. I still have a lot of surgical pain. I can't lift anything over 5 pounds (even a gallon of milk weighs more than that!!!). I shouldn't be bending over too much. I am only able to drive when I am not taking pain medication. And I sleep. lots. I am currently down 16 pounds since surgery. I have no appetite and have to force myself to eat. I have no energy.
I am almost 3 weeks post op. Most days I feel like I have been hit by a truck. Mornings are VERY hard.
I still have a long way to go. I still have at least 4 weeks of being off work.
My external staples were removed today. I have some non metal type staples that are internal that will stay forever. I am making an appointment with my GI for next week, as I will have to go back on all of my immuno-suppressant meds (HUMIRA, 6mp, etc). It is believed that my Crohn's Disease is VERY aggressive. I will more than likely need to remain on the meds for the remainder of my life.
That is what I have for now. Please please please continue to keep me in your prayers.
Thank you to everyone that has been there for us and reached out to me. I miss people, I miss my friends.
and most importantly, I want to thank my wonderful husband, Ben. He has been amazing. Some of the stuff that he has had to see and do during this, most people couldn't handle. He is my rock.
Also, my mom! She is a God send! I scared the shit out of her more than once. She has been there to dry my tears, talk me off the ledge, drive me to Dr appts, and listen to me when I think I can't do this anymore.
My dad! He drove 13 hours each way to be there for my surgery. He ended up staying about 6 days. He sat at the hospital and helped/talked to me while others had to work. I love him so much and it meant so much that he was able to be here for me.
I would be lost without Ben, my mom, my dad, and David. Thank you all so much!
Friday, July 19, 2013
surgery update
Here we go. Today was my final surgeon appt before surgery in 3 weeks.
When I last saw my surgeon he was going to spend time reviewing my scans/tests...one by one. This is because I have had pre-cancer polyps removed during my colonoscopy for 2 years in a row. His fear was that I may need part or all of my colon removed during surgery.
Today he did say that he thinks my colon is fine. He will check it out during surgery just to make sure.
I have had some complications recently that made the surgeon and I discuss moving my surgery up. These complications include randomly vomiting and partial obstructions. I had a partial obstruction while at work a few days ago. I needed to be laying on my left side with a heat compress....instead I sat at my desk and breathed through it before vomiting. It's not fun nor easy to deal with. and it can be extremely dangerous.
My surgeon and I made an agreement that I will think about it over the weekend and call him Monday if I would like to move my surgery up until next week.
I would really like to keep my original surgery date of August 9th if possible. I don't want to screw work over and I have some personal things that I would like to take care of.
I am now asking for your prayers. We need all that we can get right now.
When I last saw my surgeon he was going to spend time reviewing my scans/tests...one by one. This is because I have had pre-cancer polyps removed during my colonoscopy for 2 years in a row. His fear was that I may need part or all of my colon removed during surgery.
Today he did say that he thinks my colon is fine. He will check it out during surgery just to make sure.
I have had some complications recently that made the surgeon and I discuss moving my surgery up. These complications include randomly vomiting and partial obstructions. I had a partial obstruction while at work a few days ago. I needed to be laying on my left side with a heat compress....instead I sat at my desk and breathed through it before vomiting. It's not fun nor easy to deal with. and it can be extremely dangerous.
My surgeon and I made an agreement that I will think about it over the weekend and call him Monday if I would like to move my surgery up until next week.
I would really like to keep my original surgery date of August 9th if possible. I don't want to screw work over and I have some personal things that I would like to take care of.
I am now asking for your prayers. We need all that we can get right now.
Saturday, June 29, 2013
time for a medical update
Thought it was about time for a little update on my health status...
I went to UT Southwestern this past Monday, June 24th for a second opinion. It was determined that I am steroid dependent and that I do in fact need surgery soon. Because the doctors don't want to do surgery while I am on steroids and my body is dependent on them, I am weening down slowly.
I am only on 5mg of Prednisone, and have been at that dosage for 6ish months (total of 14 months on Prednisone at different dosages. The max you should be on it is 3 months). However, any time I have gone from 5mg to 2.5mg I have gone into full flare again. So for now we are going down 1mg a week until I am completely off. This should take about 4 weeks with hopefully no complications.
I meet with a surgeon this Wednesday, July 3rd for a surgery consult and to schedule a surgery date. This should be happening within the next month to month and a half.
It is major surgery. They will start laproscopic and if it looks worse than they thought when they get in, they will have to completely open me up. They will be taking the diseased portions of my small intestine and also my ileocecal valve.
The plan is for me to be in the hospital for 4 or 5 days. The recovery time is about 6 weeks.
Please keep us in your prayers.
I went to UT Southwestern this past Monday, June 24th for a second opinion. It was determined that I am steroid dependent and that I do in fact need surgery soon. Because the doctors don't want to do surgery while I am on steroids and my body is dependent on them, I am weening down slowly.
I am only on 5mg of Prednisone, and have been at that dosage for 6ish months (total of 14 months on Prednisone at different dosages. The max you should be on it is 3 months). However, any time I have gone from 5mg to 2.5mg I have gone into full flare again. So for now we are going down 1mg a week until I am completely off. This should take about 4 weeks with hopefully no complications.
I meet with a surgeon this Wednesday, July 3rd for a surgery consult and to schedule a surgery date. This should be happening within the next month to month and a half.
It is major surgery. They will start laproscopic and if it looks worse than they thought when they get in, they will have to completely open me up. They will be taking the diseased portions of my small intestine and also my ileocecal valve.
The plan is for me to be in the hospital for 4 or 5 days. The recovery time is about 6 weeks.
Please keep us in your prayers.
Tuesday, June 4, 2013
Defeated
Today is one of those days. I feel defeated. Defeated by my body fighting itself. Defeating by my body literally attacking itself. Defeated by Crohn's Disease.
I am sad. I am mad.
Just wanted to put this out there:
I have had a few requests lately that I give supplements a try from some friends and family that are selling them.
While I appreciate your thought and care, I simply can not accept these offers at this time. I am doing what is required to survive at this point.
My biggest issue right now is that I have a stricture (narrowing) in my small intestine which is entirely scar tissue.
Honestly, no supplement I take is going to get rid of scar tissue.
So please don't take it personal when I say no.
Please don't make me explain my reasoning for saying no.
Last time I checked, no still meant no. LOL
I am sad. I am mad.
Just wanted to put this out there:
I have had a few requests lately that I give supplements a try from some friends and family that are selling them.
While I appreciate your thought and care, I simply can not accept these offers at this time. I am doing what is required to survive at this point.
My biggest issue right now is that I have a stricture (narrowing) in my small intestine which is entirely scar tissue.
Honestly, no supplement I take is going to get rid of scar tissue.
So please don't take it personal when I say no.
Please don't make me explain my reasoning for saying no.
Last time I checked, no still meant no. LOL
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