30 Things You May Not Know About My Invisible Illness
(this is normally shared during invisible illness week. It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there.
1. The illness I live with is: Crohn's Disease
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: My doctors believe that I have had Crohn's for 15 to 20 years. I can remember symptoms for much longer than that though.
4. The biggest adjustment I’ve had to make is: that I have changed so much that my friendship circle is no longer the same.
5. Most people assume: I'm exaggerating about my pain, symptoms.
6. The hardest part about mornings are: Waking up. Insomnia is terrible for me. So when I finally get to sleep, I feel like the alarm clock goes off minutes later.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my phone and/or Kindle Fire HD
9. The hardest part about nights are: insomnia. I just would like to be able to lay down and fall asleep. Not toss, turn, toss, turn.
10. Each day I take: 4 pills. This is down from 32 that I was originally taking.
11. Regarding alternative treatments I: do take pro-biotics and other supplements.
12. If I had to choose between an invisible illness or visible I would choose: I don't want to choose. If I had a wish, it would be to have neither.
13. Regarding working and career: I work in mortgage. I work full time.
14. People would be surprised to know: I am so worried about "the other shoe dropping". I am terrified of the if/when with this disease.
15. The hardest thing to accept about my new reality has been: The limitations!
16. Something I never thought I could do with my illness that I did was: become an admin for a great IBD group on FB. (ibdjourneys). I have made so many close friends with IBD.
17. The commercials about my illness: irritate me. I mean, why does that chick look so lost all the damn time? someone get her navigation on her phone.
18. Something I really miss doing since I was diagnosed is: just being able to jump up and go. To hold plans and not have to cancel at the last minute.
19. It was really hard to have to give up: SALAD!!! I still can't get up the courage to try it.
20. A new hobby I have taken up since my diagnosis is: I do a lot of reading. A LOT!!!
21. If I could have one day of feeling normal again I would: go to a party and not leave early, or go on a fun date with my husband.
22. My illness has taught me: That I have more strength than I ever could have imagined, and that while I may be sick, I will NOT let it take over my life.
23. Want to know a secret? One thing people say that gets under my skin is: Try this supplement, or that supplement. I hear it cures Crohn's. really? there is no damn cure! UGH!
24. But I love it when people: reach out to me, just to see how I am, or just to say hi.
25. My favorite motto, scripture, quote that gets me through tough times is: Phil 4:13 and/or "This too shall pass" I repeat these to myself quite often through out each day.
26. When someone is diagnosed I’d like to tell them: to do their research. Research the hell out of it. Ask questions. Don't be shy. Find an excellent specialist.
27. Something that has surprised me about living with an illness is: my pain tolerance. I have an unbelievable tolerance for pain.
28. The nicest thing someone did for me when I wasn’t feeling well was: just hugged me. Sometimes that is all it takes. or a simple text. or email.
29. I’m involved with Invisible Illness Week because: we need awareness (It is not currently invisible illness week, but I thought it had been a while since I updated and it feels good to get my thoughts out there).
30. The fact that you read this list makes me feel: Like you care to learn more about this disease and care to learn more about myself.
Tuesday, October 15, 2013
Thursday, September 5, 2013
A to Z because I am bored
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
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
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
Tuesday, May 7, 2013
May 9th, 2012
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.
"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.
Wednesday, March 6, 2013
And just like that……a decision is made.
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.
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.
Tuesday, March 5, 2013
Crohn's/Health Update
I feel like all I post on this blog now is about my health, and to be honest, that is what my life revolves around right now. It’s fun times for sure (insert sarcasm here).
I have had a few setbacks lately.
I am awaiting appointments from a few GI doctors for a 2nd opinion on my condition as my current GI has requested this. Hopefully those will come soon.
On Friday, Feb 22, I started experiencing some extreme pain and ended up with vomiting and a fever.
I had an appointment with my current GI doctor yesterday, March 4th.
I am still have a lot of lower right abdominal pain (which is mainly where my Crohn’s is and where my stricture (narrowing) is located). I am on 2 different types of steroids (currently 15mg of Prednisone and 9mg of Entocort), 8 anti inflammatory pills (Pentasa, each pill is 500mg), potassium (20mEq), and multiple supplements (6 multi-vitamins, 4 GI vitamins) a day, plus my Humira injections every 2 weeks. This is not helping the pain.
My current GI believes that my stricture (narrowing) is getting smaller, which makes it difficult for anything to pass through, thus a blockage in my small intestine could occur at any time. If this were to happen, it would result in emergency surgery to remove the narrowed part of my small intestine. This is something we obviously would like to prevent for as long as possible. When a surgery takes place like this with Crohn’s…..normally the Crohn’s just comes back in a different place, thus requiring multiple surgeries.
My current GI also believes that although the Humira worked almost immediately the first time I took it; it is not working as well this time around. He asked me to research and think about and pray about adding another immuno suppressant to the Humira. This one is known as 6-MP or Mercaptopurine. (you can read more about it here: http://www.gihealth.com/html/education/drugs/purinethol.html )
While Humira already has black box warnings from the FDA on the side effects, 6-MP would increase my risk of getting lymphoma. I have accepted the risks with Humira and know that the benefits for now, outweigh the side effects or potential risks. Adding another immuno suppressant to this makes me more nervous.
So I need advice, prayers, thoughts.
Do you take 6-MP? Have you ever taken it with Humira? What side effects have you had? What are your thoughts on it?
Please, please keep myself and Ben in your prayers as we pray, research, and think about this next step.
I have had a few setbacks lately.
I am awaiting appointments from a few GI doctors for a 2nd opinion on my condition as my current GI has requested this. Hopefully those will come soon.
On Friday, Feb 22, I started experiencing some extreme pain and ended up with vomiting and a fever.
I had an appointment with my current GI doctor yesterday, March 4th.
I am still have a lot of lower right abdominal pain (which is mainly where my Crohn’s is and where my stricture (narrowing) is located). I am on 2 different types of steroids (currently 15mg of Prednisone and 9mg of Entocort), 8 anti inflammatory pills (Pentasa, each pill is 500mg), potassium (20mEq), and multiple supplements (6 multi-vitamins, 4 GI vitamins) a day, plus my Humira injections every 2 weeks. This is not helping the pain.
My current GI believes that my stricture (narrowing) is getting smaller, which makes it difficult for anything to pass through, thus a blockage in my small intestine could occur at any time. If this were to happen, it would result in emergency surgery to remove the narrowed part of my small intestine. This is something we obviously would like to prevent for as long as possible. When a surgery takes place like this with Crohn’s…..normally the Crohn’s just comes back in a different place, thus requiring multiple surgeries.
My current GI also believes that although the Humira worked almost immediately the first time I took it; it is not working as well this time around. He asked me to research and think about and pray about adding another immuno suppressant to the Humira. This one is known as 6-MP or Mercaptopurine. (you can read more about it here: http://www.gihealth.com/html/education/drugs/purinethol.html )
While Humira already has black box warnings from the FDA on the side effects, 6-MP would increase my risk of getting lymphoma. I have accepted the risks with Humira and know that the benefits for now, outweigh the side effects or potential risks. Adding another immuno suppressant to this makes me more nervous.
So I need advice, prayers, thoughts.
Do you take 6-MP? Have you ever taken it with Humira? What side effects have you had? What are your thoughts on it?
Please, please keep myself and Ben in your prayers as we pray, research, and think about this next step.
Sunday, February 3, 2013
My first time being admitted to the hospital 1/23/13
The week started off strange. We were off work that Monday due to MLK day.
Tuesday, I went to work as usual but felt like I had a stomach bug, so I went home ill around 10:30am. Wednesday rolls around and I still don't feel right but went to work anyway. Through out the day, I was extremely fatigued, felt very dehydrated, no energy, light headed, etc. I called my GI to see what to do next. The nurse suggested that I drink lots of Gatorade over the next 2 hours to try and get hydrated, then call her back.
So it began, I would drink Gatorade, immediately run to the bathroom and pee it out. Something wasn't right. So after 2 hours, I called the GI back and the nurse recommended that I go to the ER to get some IV hydration. No big deal. Not my first go round. Went home to pick up Ben, change clothes, get phone chargers, then off we went to the ER.
In the ER, they hooked an IV up with saline hydration and did some blood work. Within 10-15 minutes they were back saying I had to be admitted immediately and they started hanging more bags on my IV pole. These were potassium.
I was told that they had gotten my blood work back and my potassium was at 2.3 (normal range is 3.5 to 5.2).
They called my GI and he told them to admit me immediately and get IV potassium going.
I have to tell you. Potassium burns like hell. I thought my arm might catch on fire until they were able to get it properly diluted to a strength I could handle. Not fun!!!
When I got into a room, I was given potassium pills on top of the IV and in the middle of the night given powdered potassium drinks as well. I was hooked up to heart monitors and put in the "step down" ICU unit. This was extremely scary for me!
The next morning, more blood work and the potassium came back at 2.6
It really wasn't budging much considering the amount of potassium I was being given.
So I continued with the IV and powdered potassium drinks. Eventually that day (Thursday), my GI came in. We went over a few things and it was determined that I was in a full Crohn's flare! I had NO clue. I honestly thought I was in remission. I guess I was ignoring the pain as I had gotten so used to it over most of my life. EEK!
The hospital also did a C Diff test on me to make sure nothing else was going on. This test came back negative.
So they continued with potassium and upping my normal prescriptions that I take for Crohn's.
I was now taking 40mg Prednisone daily and 4000mg of Pentasa daily. Fun times! NOT!
by afternoon of the 24th (Thursday) my potassium was to 3.5
and that evening to 4.1
By Friday morning, my potassium had crashed to 3.1
Saturday morning, it was decided that I was able to be released and I was going home with potassium powdered drinks for 3x a day for a week; then to report to my GI asap on Monday.
So off I went.
I worked only mornings at work (Monday 1/28 - Thursday 1/31) due to Doctors appts and lab work that had to be done.
I reported to my GI on Monday. After receiving clearance from my ENT (due to having surgery in December), it was determined that I needed to go back on Humira (immuno suppresant) immediately. One shot every 2 weeks. Luckily, I had 2 shots still in my refrigerator from the last go round. And it was determined that I needed to come off the Prednisone as fast as medically possible as I was beginning to develop other side effects from it that if stuck around, may not be reversed.
So, I came home Monday, injected myself with Humira and we are moving forward from there. I am on 4000mg of Pentasa. I am still on Prednisone, but reducing the dosage rather quickly.
Prednisone schedule:
Jan 25-28, 40 mg
Jan 29 -Feb 1, 30 mg
Feb 2- Feb 5, 20mg
Feb 6 - Feb 9, 10mg
Feb 10 - Feb 13, 5mg
Feb 14 - Feb 17, 2.5 mg
Then stop it all together.
Since I am weaning off of it so quickly, I have had some issues with headaches....and lower right ab Crohn's pains. But I need it out of my system.
While doing lab work twice this week, I learned that my potassium is now just slightly on the high side. and that my blood sugar (glucose) is a bit high for me as well at 119.
This is something we are watching very closely and I will report to my GI again this week, on Thursday, February 7th.
This has been a very scary time for myself, Ben, and those close to us. I am not out of the woods yet. Potassium is a scary thing to have crash on you.
I wanted to get this all written down so I would have it to look back on in the future.
Please continue to keep us in your prayers as we try to get this terrible disease somewhat under control. Also, please pray that I have no bad reactions to the Humira injections that I am once again taking.
Tuesday, I went to work as usual but felt like I had a stomach bug, so I went home ill around 10:30am. Wednesday rolls around and I still don't feel right but went to work anyway. Through out the day, I was extremely fatigued, felt very dehydrated, no energy, light headed, etc. I called my GI to see what to do next. The nurse suggested that I drink lots of Gatorade over the next 2 hours to try and get hydrated, then call her back.
So it began, I would drink Gatorade, immediately run to the bathroom and pee it out. Something wasn't right. So after 2 hours, I called the GI back and the nurse recommended that I go to the ER to get some IV hydration. No big deal. Not my first go round. Went home to pick up Ben, change clothes, get phone chargers, then off we went to the ER.
In the ER, they hooked an IV up with saline hydration and did some blood work. Within 10-15 minutes they were back saying I had to be admitted immediately and they started hanging more bags on my IV pole. These were potassium.
I was told that they had gotten my blood work back and my potassium was at 2.3 (normal range is 3.5 to 5.2).
They called my GI and he told them to admit me immediately and get IV potassium going.
I have to tell you. Potassium burns like hell. I thought my arm might catch on fire until they were able to get it properly diluted to a strength I could handle. Not fun!!!
When I got into a room, I was given potassium pills on top of the IV and in the middle of the night given powdered potassium drinks as well. I was hooked up to heart monitors and put in the "step down" ICU unit. This was extremely scary for me!
The next morning, more blood work and the potassium came back at 2.6
It really wasn't budging much considering the amount of potassium I was being given.
So I continued with the IV and powdered potassium drinks. Eventually that day (Thursday), my GI came in. We went over a few things and it was determined that I was in a full Crohn's flare! I had NO clue. I honestly thought I was in remission. I guess I was ignoring the pain as I had gotten so used to it over most of my life. EEK!
The hospital also did a C Diff test on me to make sure nothing else was going on. This test came back negative.
So they continued with potassium and upping my normal prescriptions that I take for Crohn's.
I was now taking 40mg Prednisone daily and 4000mg of Pentasa daily. Fun times! NOT!
by afternoon of the 24th (Thursday) my potassium was to 3.5
and that evening to 4.1
By Friday morning, my potassium had crashed to 3.1
Saturday morning, it was decided that I was able to be released and I was going home with potassium powdered drinks for 3x a day for a week; then to report to my GI asap on Monday.
So off I went.
I worked only mornings at work (Monday 1/28 - Thursday 1/31) due to Doctors appts and lab work that had to be done.
I reported to my GI on Monday. After receiving clearance from my ENT (due to having surgery in December), it was determined that I needed to go back on Humira (immuno suppresant) immediately. One shot every 2 weeks. Luckily, I had 2 shots still in my refrigerator from the last go round. And it was determined that I needed to come off the Prednisone as fast as medically possible as I was beginning to develop other side effects from it that if stuck around, may not be reversed.
So, I came home Monday, injected myself with Humira and we are moving forward from there. I am on 4000mg of Pentasa. I am still on Prednisone, but reducing the dosage rather quickly.
Prednisone schedule:
Jan 25-28, 40 mg
Jan 29 -Feb 1, 30 mg
Feb 2- Feb 5, 20mg
Feb 6 - Feb 9, 10mg
Feb 10 - Feb 13, 5mg
Feb 14 - Feb 17, 2.5 mg
Then stop it all together.
Since I am weaning off of it so quickly, I have had some issues with headaches....and lower right ab Crohn's pains. But I need it out of my system.
While doing lab work twice this week, I learned that my potassium is now just slightly on the high side. and that my blood sugar (glucose) is a bit high for me as well at 119.
This is something we are watching very closely and I will report to my GI again this week, on Thursday, February 7th.
This has been a very scary time for myself, Ben, and those close to us. I am not out of the woods yet. Potassium is a scary thing to have crash on you.
I wanted to get this all written down so I would have it to look back on in the future.
Please continue to keep us in your prayers as we try to get this terrible disease somewhat under control. Also, please pray that I have no bad reactions to the Humira injections that I am once again taking.
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