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 potassium. Show all posts
Showing posts with label potassium. Show all posts
Tuesday, May 7, 2013
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, September 30, 2012
10 Things you probably don't know about me and living with Crohn's disease
I thought I would make a list of things that most people don't know about me and my Crohn's disease.
1. I have a low grade fever about 5 out of 7 days of the week. Normally it starts in the late afternoon, early evening. My eyes will start burning and my energy is instantly gone.
2. I am achy most days as well. You know how your body aches when you are feverish? yeah, that's what I feel a lot.
3. I inject myself with Humira every other Sunday morning. For that whole day, I just mainly sleep as it is impossible to keep my eyes open.
4. I miss having a social life, but I don't miss those people that were just my party friends. Turns out, I don't hear from them at all now that I don't party.
5. I take 28 pills a day. That is 28 between my prescriptions and supplements.
6. My potassium sometimes gets so low that I get intense cramps in my legs and feet, that I have to try to walk off. most of the time this happens in the middle of the night and results in crying. Every time I go to the ER, my potassium is so low, they make me take a giant horse pill *barf*
7. I don't sleep at night, which means during the week, I get hardly any sleep. On average during the week, I sleep about 2-4 hours a night....and that is after taking sleep aids. I take many naps during the day on the weekend.
8. Due to my steroids (Prednisone), and the increasing/decreasing required to find a good dosage for me, I have gained 21 pounds in 2 months. NOT COOL!
9. I now know more about my body, more about side effects of meds, more about Crohn's than I really ever realized I could know.
10. At the age of 34, I feel most days like I have been hit by a truck, but I keep moving along. I have some really bad days and some really good days though.
1. I have a low grade fever about 5 out of 7 days of the week. Normally it starts in the late afternoon, early evening. My eyes will start burning and my energy is instantly gone.
2. I am achy most days as well. You know how your body aches when you are feverish? yeah, that's what I feel a lot.
3. I inject myself with Humira every other Sunday morning. For that whole day, I just mainly sleep as it is impossible to keep my eyes open.
4. I miss having a social life, but I don't miss those people that were just my party friends. Turns out, I don't hear from them at all now that I don't party.
5. I take 28 pills a day. That is 28 between my prescriptions and supplements.
6. My potassium sometimes gets so low that I get intense cramps in my legs and feet, that I have to try to walk off. most of the time this happens in the middle of the night and results in crying. Every time I go to the ER, my potassium is so low, they make me take a giant horse pill *barf*
7. I don't sleep at night, which means during the week, I get hardly any sleep. On average during the week, I sleep about 2-4 hours a night....and that is after taking sleep aids. I take many naps during the day on the weekend.
8. Due to my steroids (Prednisone), and the increasing/decreasing required to find a good dosage for me, I have gained 21 pounds in 2 months. NOT COOL!
9. I now know more about my body, more about side effects of meds, more about Crohn's than I really ever realized I could know.
10. At the age of 34, I feel most days like I have been hit by a truck, but I keep moving along. I have some really bad days and some really good days though.
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