Donny, Alex, and I hope that you enjoy your Mother's Day video! You have been an awesome mom and incredibly understanding wife this past year.
Love,
Don
Sunday, May 13, 2012
Saturday, January 28, 2012
Everyone is doing much better!
Good news to report!
Alex is doing much better. He is no longer needing breathing treatments and is acting and playing like himself.
Donny has been a champ since his nose surgery. He's only had one minor nosebleed from when he bumped himself in the nose! Yay!
Don has responded well to his second dose of remecade and his bowels are getting back to nearly normal.
Steph still has a cold but it's hard to complain with everyone else doing so well!
Thanks to all for your prayers and well thoughts sent our way! God is good and we are thankful for his healing hands to our family!! We are so blessed!
Alex is doing much better. He is no longer needing breathing treatments and is acting and playing like himself.
Donny has been a champ since his nose surgery. He's only had one minor nosebleed from when he bumped himself in the nose! Yay!
Don has responded well to his second dose of remecade and his bowels are getting back to nearly normal.
Steph still has a cold but it's hard to complain with everyone else doing so well!
Thanks to all for your prayers and well thoughts sent our way! God is good and we are thankful for his healing hands to our family!! We are so blessed!
Doctor Donny
Donny brought in his doctor kit for show and tell at daycare this past Friday. Here he is: 
Friday, January 20, 2012
Alex is home!
Tonight I have good news to report.
While Alex still isn't 100% he is significantly better than he has been the last few days. He is eating better, breathing easier (though still needing breathing treatments every 4-6 hours and oral steroids for the next few days at least) and playing more.
He hasn't had fever in over 24 hours. We are hopeful this trend continues and are so very glad to have him home, especially his big brother Donny.
Thanks to all for the prayers and support. Please keep them coming because Alex still has a little ways to go before getting back to his old self.
While Alex still isn't 100% he is significantly better than he has been the last few days. He is eating better, breathing easier (though still needing breathing treatments every 4-6 hours and oral steroids for the next few days at least) and playing more.
He hasn't had fever in over 24 hours. We are hopeful this trend continues and are so very glad to have him home, especially his big brother Donny.
Thanks to all for the prayers and support. Please keep them coming because Alex still has a little ways to go before getting back to his old self.
Thursday, January 19, 2012
The Alm Family Just Cannot Seem to Get Well!
So there has been a lot going on, to say the least, at the Alm Household in the last several weeks. Here is an update on all that has been going on in the last few weeks:
Early November: Don start with a colitis flare. He visits his gastroenterologist who ups several medications and checks several tests to rule out infection all of which were negative. We start with our watch and wait to see if the meds will work as an outpatient.
Just before Thanksgiving: Alex develops his 2nd ear infection - this time with a 104.5 degree fever. He fails oral antibiotics and requires a dose of rocephin (injectible antibiotic - one in each leg) just as he did for his first ear infection a few weeks prior.
First week of December: Alex develops his 3rd ear infection on the heels of his 2nd. This time he also has very high fevers. This time it takes 3 days of rocephin to clear (for a total of 6 shots in 3 days.. poor baby!). On the third day of Rocephin we get in with the ENT doctor to discuss ear tubes and we all agree these need to be done for both frequent resistant infections as well as some mild hearing loss due to the fluid buildup behind the ears. He can schedule him to have this done the following Monday.
Monday December 12th: Alex goes under anesthesia to get his tubes placed and to drain the fluid from both ears. Overall he does really well and only really takes the morning to get over his anesthesia. The ears end up draining for 2 weeks (which is longer than typical) and he sees the ENT again who states all looks good. Alex's hearing was tested again at the ENT appointment and it has already improved.
December 19th: Steph's 30th birthday
December 25th: Christmas Day - Alex and Donny have a blast and we spend the remainder of the weekend in Lenoir, NC with Steph's family. On the way home to Greensboro from Lenoir from Christmas Donny has 6 nosebleeds in one day (he's had trouble with frequent night time nose bleeds and occasional daytime nose bleeds for some time but this is the worst by far). At least 2 of the nose bleeds take more than 5 and one nearly 15 minutes to stop.
December 27th: Don is admitted to the hospital as his flare has gotten significantly worse and isn't being controlled with oral medications thus needing IV medications (see blog posts). Unfortunately we have to cancel our planned trip to NJ for the New Years Holiday (but thankfully Steph had a few days off because of the planned vacation to take care of the kids while Don is in the hospital)
December 28th: Don's 32nd birthday. - Don still in the hospital
December 29th: Donny has an ENT appointment - at least one large blood vessel that was close to the surface of the nose passage is found and is the likely source of his nosebleeds. To treat this they can do a procedure called cautery or "burning" of the vessel to make it close off. This requires anesthesia to be done.
December 30th: Don and Steph's 6th wedding anniversary - Don still hospitalized
January 1st: New Years Day. - Don still hospitalized
January 3rd: Don comes home after receiving a new medication called Remicade to try to treat his flare. He still isn't feeling great and still having copious bloody bowel movements - at one point 23 BMs in 19 hours. There isn't anything more in the IV they can give him though and thankfully he is doing a good job keeping up with fluids, etc to keep him hydrated and not needing an IV for hydration so they decide to continue therapy as an outpatient for now and keep a close eye on his symptoms.
January 7th: Alex develops a 102.8 fever - Steph thinks it's probably a virus and in just 48 hours his fever has gone down significantly and Alex is acting normally so he can go back to daycare after missing 2 days.
January 13th: Donny has his procedure under anesthesia. While under anesthesia they find that he actually has a large blood vessel on both sides of his nose so both are cauterized. Donny wakes up and does really well. All day he is hilarious - like he's had funny brownies or something - he's talkative, goofy and got the munchies!
January 14th: Donny and Alex's Birthday Party. Both boys are acting well overall, and a good time was had by all at the party but by the evening Alex starts coughing
January 15th: Alex spikes a fever and starts coughing harder and starting to have some trouble breathing. Fever gets to upper 101s this day. Steph calls one of her doctor friends and gets Alex started on Azithromycin (the same medication as a Zpac)as she listened to his lungs and they sounded like there could be infection in them.
January 16th: Alex is acting more puny and fever is now in the 102s. One of Steph's Colleagues graciously states she will see Alex to see if he needs more/different antibiotics or steroids or both. In clinic his fever gets to the highest it has been: 102.8 and he is having more trouble breathing. His O2 sats in the office are in the mid 80s and Alex is sent to the ER. In the ER he gets a chest xray and albuterol nebulizer treatment. Chest xray reveals possible very early pneumonia in the right middle lobe of his lung. He is started on oral antibiotics and sent home as he is able to keep his Oxygen saturation (O2 sats) in the low to mid 90s. He was given a prescription to continue Albuterol nebulizer treatments at home every 4 hours.
January 17th: Alex has a decent morning but still doesn't feel well. Since his ER visit he has been getting nebulized treatments every 4 hours as well as a 2nd antibiotic. He continues to work pretty hard to breathe. By evening despite having 2 antibiotics his fever spikes to 103.8 and he vomits a large amount. Steph takes him back to the ER where his sats are again in the 80s and his fever is very high still. They decide to admit him for IV antibiotics, fluids, steroids and to rule out some infections.
January 18th: Despite getting these medications he continues to work hard to breathe and he is placed on oxygen to keep his O2 sats in the low 90s. Fevers have gone down thankfully. Unfortunately though Alex acts pretty pitiful all day. Alex vomits again x2. Don gets his 2nd dose of his special IV medication down stairs at the hospital this morning and this pretty much wipes him out for the rest of the day.
January 19th: O2 sat seem to start improving and Alex seems to have a little more energy. They are able to during the day wean him off of his oxygen so that he is just on room air. His sats are in the low to mid 90s but no longer in the 80s.
And this is where we stand with Alex still in the hospital - We will have to see how the night goes and how his breathing is doing before we will know when he will come home. If he has a good night, Alex may get to come home on January 20th but only time will tell. Thankfully Don seems to be doing better with his bowels (though not 100% but under 7 BM/day and he's had blood only once in his loose stools in 3 days). Donny also has been doing great since his procedure - no more significant nosebleeds! And while as Alex got sick Steph developed a cold it really is a blessing this is the first time she has gotten sick throughout this.
Whew! It's been the month from hell but hopefully things will start turning around soon. We aren't looking forward to the hospital bills coming up but are thankful for the doctors, nurses and staff that have taken excellent care of everyone and for the prayers of so many family, friends and even strangers - they are making a difference. We appreciate each and every one of you for reaching out to us during these difficult times and providing us with support in so many ways - physically, mentally, emotionally, spiritually. We don't understand why our little family is going through this test but we are sure it's in God's plan somehow. We will keep things updated here and/or on facebook about how Alex is doing over the next few days. A special thank you goes out to Steph's Mom Susan Morgan for taking some time off of work to help us with the boys as all of this has been going on - we can never thank you enough for all of your help and love. Keep the prayers coming... God is good and he continues to heal in his time.
Here are some pics of Alex while he was in the hospital:
Early November: Don start with a colitis flare. He visits his gastroenterologist who ups several medications and checks several tests to rule out infection all of which were negative. We start with our watch and wait to see if the meds will work as an outpatient.
Just before Thanksgiving: Alex develops his 2nd ear infection - this time with a 104.5 degree fever. He fails oral antibiotics and requires a dose of rocephin (injectible antibiotic - one in each leg) just as he did for his first ear infection a few weeks prior.
First week of December: Alex develops his 3rd ear infection on the heels of his 2nd. This time he also has very high fevers. This time it takes 3 days of rocephin to clear (for a total of 6 shots in 3 days.. poor baby!). On the third day of Rocephin we get in with the ENT doctor to discuss ear tubes and we all agree these need to be done for both frequent resistant infections as well as some mild hearing loss due to the fluid buildup behind the ears. He can schedule him to have this done the following Monday.
Monday December 12th: Alex goes under anesthesia to get his tubes placed and to drain the fluid from both ears. Overall he does really well and only really takes the morning to get over his anesthesia. The ears end up draining for 2 weeks (which is longer than typical) and he sees the ENT again who states all looks good. Alex's hearing was tested again at the ENT appointment and it has already improved.
December 19th: Steph's 30th birthday
December 25th: Christmas Day - Alex and Donny have a blast and we spend the remainder of the weekend in Lenoir, NC with Steph's family. On the way home to Greensboro from Lenoir from Christmas Donny has 6 nosebleeds in one day (he's had trouble with frequent night time nose bleeds and occasional daytime nose bleeds for some time but this is the worst by far). At least 2 of the nose bleeds take more than 5 and one nearly 15 minutes to stop.
December 27th: Don is admitted to the hospital as his flare has gotten significantly worse and isn't being controlled with oral medications thus needing IV medications (see blog posts). Unfortunately we have to cancel our planned trip to NJ for the New Years Holiday (but thankfully Steph had a few days off because of the planned vacation to take care of the kids while Don is in the hospital)
December 28th: Don's 32nd birthday. - Don still in the hospital
December 29th: Donny has an ENT appointment - at least one large blood vessel that was close to the surface of the nose passage is found and is the likely source of his nosebleeds. To treat this they can do a procedure called cautery or "burning" of the vessel to make it close off. This requires anesthesia to be done.
December 30th: Don and Steph's 6th wedding anniversary - Don still hospitalized
January 1st: New Years Day. - Don still hospitalized
January 3rd: Don comes home after receiving a new medication called Remicade to try to treat his flare. He still isn't feeling great and still having copious bloody bowel movements - at one point 23 BMs in 19 hours. There isn't anything more in the IV they can give him though and thankfully he is doing a good job keeping up with fluids, etc to keep him hydrated and not needing an IV for hydration so they decide to continue therapy as an outpatient for now and keep a close eye on his symptoms.
January 7th: Alex develops a 102.8 fever - Steph thinks it's probably a virus and in just 48 hours his fever has gone down significantly and Alex is acting normally so he can go back to daycare after missing 2 days.
January 13th: Donny has his procedure under anesthesia. While under anesthesia they find that he actually has a large blood vessel on both sides of his nose so both are cauterized. Donny wakes up and does really well. All day he is hilarious - like he's had funny brownies or something - he's talkative, goofy and got the munchies!
January 14th: Donny and Alex's Birthday Party. Both boys are acting well overall, and a good time was had by all at the party but by the evening Alex starts coughing
January 15th: Alex spikes a fever and starts coughing harder and starting to have some trouble breathing. Fever gets to upper 101s this day. Steph calls one of her doctor friends and gets Alex started on Azithromycin (the same medication as a Zpac)as she listened to his lungs and they sounded like there could be infection in them.
January 16th: Alex is acting more puny and fever is now in the 102s. One of Steph's Colleagues graciously states she will see Alex to see if he needs more/different antibiotics or steroids or both. In clinic his fever gets to the highest it has been: 102.8 and he is having more trouble breathing. His O2 sats in the office are in the mid 80s and Alex is sent to the ER. In the ER he gets a chest xray and albuterol nebulizer treatment. Chest xray reveals possible very early pneumonia in the right middle lobe of his lung. He is started on oral antibiotics and sent home as he is able to keep his Oxygen saturation (O2 sats) in the low to mid 90s. He was given a prescription to continue Albuterol nebulizer treatments at home every 4 hours.
January 17th: Alex has a decent morning but still doesn't feel well. Since his ER visit he has been getting nebulized treatments every 4 hours as well as a 2nd antibiotic. He continues to work pretty hard to breathe. By evening despite having 2 antibiotics his fever spikes to 103.8 and he vomits a large amount. Steph takes him back to the ER where his sats are again in the 80s and his fever is very high still. They decide to admit him for IV antibiotics, fluids, steroids and to rule out some infections.
January 18th: Despite getting these medications he continues to work hard to breathe and he is placed on oxygen to keep his O2 sats in the low 90s. Fevers have gone down thankfully. Unfortunately though Alex acts pretty pitiful all day. Alex vomits again x2. Don gets his 2nd dose of his special IV medication down stairs at the hospital this morning and this pretty much wipes him out for the rest of the day.
January 19th: O2 sat seem to start improving and Alex seems to have a little more energy. They are able to during the day wean him off of his oxygen so that he is just on room air. His sats are in the low to mid 90s but no longer in the 80s.
And this is where we stand with Alex still in the hospital - We will have to see how the night goes and how his breathing is doing before we will know when he will come home. If he has a good night, Alex may get to come home on January 20th but only time will tell. Thankfully Don seems to be doing better with his bowels (though not 100% but under 7 BM/day and he's had blood only once in his loose stools in 3 days). Donny also has been doing great since his procedure - no more significant nosebleeds! And while as Alex got sick Steph developed a cold it really is a blessing this is the first time she has gotten sick throughout this.
Whew! It's been the month from hell but hopefully things will start turning around soon. We aren't looking forward to the hospital bills coming up but are thankful for the doctors, nurses and staff that have taken excellent care of everyone and for the prayers of so many family, friends and even strangers - they are making a difference. We appreciate each and every one of you for reaching out to us during these difficult times and providing us with support in so many ways - physically, mentally, emotionally, spiritually. We don't understand why our little family is going through this test but we are sure it's in God's plan somehow. We will keep things updated here and/or on facebook about how Alex is doing over the next few days. A special thank you goes out to Steph's Mom Susan Morgan for taking some time off of work to help us with the boys as all of this has been going on - we can never thank you enough for all of your help and love. Keep the prayers coming... God is good and he continues to heal in his time.
Here are some pics of Alex while he was in the hospital:
Tuesday, January 3, 2012
Don Is Home from the Hospital
I just returned home from the hospital at 8:30 tonight!
Since the IV steroids were not working to control my ulcerative colitis flare, I was given my first dose of Remicade this afternoon/evening. My ulcerative colitis flare is not completely under control yet, and it may take some time for the Remicade to take effect. However, there is no need for me to stay in the hospital with this new medication. I will need to go to the hospital periodically (next dose is in 2 weeks and eventually once every 2 months) to get more doses of Remicade, but I will only need to be in the hospital for a few hours.
It is a relief to be home with Steph, Donny, and Alex, and I hope that things will start getting back to normal now. Thank you all for your support, thoughts, and prayers!
-Don
Since the IV steroids were not working to control my ulcerative colitis flare, I was given my first dose of Remicade this afternoon/evening. My ulcerative colitis flare is not completely under control yet, and it may take some time for the Remicade to take effect. However, there is no need for me to stay in the hospital with this new medication. I will need to go to the hospital periodically (next dose is in 2 weeks and eventually once every 2 months) to get more doses of Remicade, but I will only need to be in the hospital for a few hours.
It is a relief to be home with Steph, Donny, and Alex, and I hope that things will start getting back to normal now. Thank you all for your support, thoughts, and prayers!
-Don
Monday, January 2, 2012
Monday Hospital Update from Don
Thank you all for keeping me and my family in your thoughts and prayers!
Monday, January 2nd
- Continued IV steroids
- Frequency of bowel movements increased from 4 to 6, and some bleeding and cramping has resumed
- Continued exercise routine by walking the halls for 30 minutes, stretching, and doing a few exercises like calf raises, squats, push ups, and curl ups in my room
- Energy level low - fatigue
What Happened Today?
Today started out promising, but it seems to be ending with a set back. This morning, the doctor decided to keep me on the IV steroids for another day, which means that the earliest that I can go home now is Wednesday instead of Tuesday. Bummer!
Steph, Donny, and Alex came to the hospital to visit me shortly after I saw the doctor this morning, and they hung out in my room for about 3 hours and ate lunch with me. We had some good family time together playing with some of the boys' toys from Christmas, watching some TV, and eating lunch. It was definitely the highlight of my day!
Unfortunately, about an hour after Steph and the boys left, my flare started back up. The doctor didn't seem overly concerned about it, but he ordered some blood tests for this afternoon and tomorrow morning. The flare isn't as bad as Friday, but now I'm not sure if I'll be out of the hospital by Wednesday. Trying to get back into a positive state of mind, I continued my exercise routine this afternoon, which helped raise my energy level temporarily.
By dinner time, I started feeling fatigued, and I dozed off during part of the Rose Bowl game on TV. Right after I publish this post, I'll probably go to sleep early and get some extra rest.
Please continue to keep us all in your thoughts and prayers. I can't wait to get out of the hospital so I can be home with Steph, Donny, and Alex and resume living again! It would especially be nice to be back home for at least a couple of days before my classes start back up on Monday the 9th.
-Don
Monday, January 2nd
- Continued IV steroids
- Frequency of bowel movements increased from 4 to 6, and some bleeding and cramping has resumed
- Continued exercise routine by walking the halls for 30 minutes, stretching, and doing a few exercises like calf raises, squats, push ups, and curl ups in my room
- Energy level low - fatigue
What Happened Today?
Today started out promising, but it seems to be ending with a set back. This morning, the doctor decided to keep me on the IV steroids for another day, which means that the earliest that I can go home now is Wednesday instead of Tuesday. Bummer!
Steph, Donny, and Alex came to the hospital to visit me shortly after I saw the doctor this morning, and they hung out in my room for about 3 hours and ate lunch with me. We had some good family time together playing with some of the boys' toys from Christmas, watching some TV, and eating lunch. It was definitely the highlight of my day!
Unfortunately, about an hour after Steph and the boys left, my flare started back up. The doctor didn't seem overly concerned about it, but he ordered some blood tests for this afternoon and tomorrow morning. The flare isn't as bad as Friday, but now I'm not sure if I'll be out of the hospital by Wednesday. Trying to get back into a positive state of mind, I continued my exercise routine this afternoon, which helped raise my energy level temporarily.
By dinner time, I started feeling fatigued, and I dozed off during part of the Rose Bowl game on TV. Right after I publish this post, I'll probably go to sleep early and get some extra rest.
Please continue to keep us all in your thoughts and prayers. I can't wait to get out of the hospital so I can be home with Steph, Donny, and Alex and resume living again! It would especially be nice to be back home for at least a couple of days before my classes start back up on Monday the 9th.
-Don
Sunday, January 1, 2012
Why is Don in the Hospital?
On Tuesday, December 27th, I was admitted to Moses Cone Memorial Hospital in Greensboro, NC. Several people have seen posts on Facebook and have heard through the grapevine that I have been in the hospital over the past couple of days, and I know that many people have been asking questions about why I am in the hospital. Today, I decided that it would be helpful to lay out all of the information to help answer some questions that you have in this blog post.
What's Wrong with Don?
I have an inflammatory bowel disease (IBD) known as ulcerative colitis (UC). Ulcerative colitis is a disease in which the lining of the colon (large intestine) becomes inflamed and develops sores (ulcers), leading to bleeding and diarrhea. I was initially diagnosed with the disease when I was 20 years old as a junior at Bucknell University. It is fairly common for the disease to manifest itself in young adulthood, and you don't know that you have it until you start experiencing symptoms. There is some history of the disease in my family, but doctors are not sure why the disease develops in some people and not others. Since the beginning of November, I have been experiencing a severe ulcerative colitis flare, which consists of frequent (8-10) bowel movements per day consisting of bloody diarrhea and moderate to severe stomach cramping.
What Happened?
My flare started out mildly in the beginning of November, but progressively got worse near the end of November. It is not known what triggered the flare, but once it started, it didn't stop. I have had flares in the past, but I have usually been able to get them under control within a few weeks by taking various kinds of medication prescribed by my GI doctor (doc who specializes in the digestive system). Unfortunately, this time my flare was not responding to the medications that I was taking from home, and I was maxed out on my doses about a week before Christmas. My symptoms got worse during Christmas weekend, and I saw my GI doctor on Tuesday, December 27th. Since my flare was not improving, he admitted me to the hospital right after my appointment so I could receive some different medicine via an IV to try to stop my flare.
What's Been Going on in the Hospital?
I went to the hospital on the afternoon of Tuesday, December 27th, one day before my 32nd birthday. Am I still in the hospital, but I'm hopeful that I can be released as early as Tuesday, January 3rd.
Tuesday, December 27th
- Appointment w/ GI doctor early afternoon - ordered to be admitted to the hospital right after my appointment
- Several tests performed to rule out infections as the source of my symptoms (chest/abdominal x-rays, blood tests, and c-diff tests administered) - found out next day that all tests came back negative confirming that I am having an ulcerative colitis flare
- Started IV steroids
- Frequency of bowel movements reduced from 10 to 6 for the day
- Energy level low
Wednesday, December 28th
- Continued IV steroids
- Frequency of bowel movements reduced from 6 to 4 for the day with no blood
- Feeling much better and optimistic about leaving the hospital by Friday
- Energy level high
Thursday, December 29th
- Stopped IV steroids in the morning
- Started back on prednisone (oral steroids) in morning
- Frequency of bowel movements reduced to 1 for the day with no blood
- Energy level high
Friday, December 30th
- Ulcerative colitis flare started again at midnight with bloody diarrhea and cramping
- Frequency of bowel movements increased from 1 to 9 for the day with moderate to severe abdominal pain
- Stopped taking prednisone and placed back on IV steroids later in the afternoon
- Additional tests (chest x-ray, blood tests, and tuberculosis test) administered to prepare for a new medication called Remicade next week if my symptoms don't improve over the weekend - test results came back on Sunday and confirmed that I should be able to take Remicade if needed
- Felt pretty down and depressed throughout the day
- Energy level very low
Saturday, December 31st
- Continued IV steroids
- Frequency of bowel movements reduced from 9 to 2 with blood and cramping going away
- Started an exercise routine by walking the halls for 20 minutes, stretching, and doing a few exercises like push ups and curl ups in bed
- Energy level high
Sunday, January 1st
- Continued IV steroids
- Frequency of bowel movements increased from 2 to 4, but there is no blood or cramping
- Continued exercise routine by walking the halls for 30 minutes, stretching, and doing a few exercises like calf raises, push ups, and curl ups
- Energy level high
When Does Don Get To Go Home from the Hospital?
I am hopeful that I will be able to go home from the hospital as early as Tuesday, January 3rd. This will only be the case if I do not have any more bloody diarrhea. Most likely I will be taken off of the IV steroids on the morning of Monday, January 2nd and put back on prednisone (oral steroids). If I make it 24 hours without a flare, I should be able to go home on Tuesday (Wahoo!!!).
What Happens If Don Gets Worse Again?
If I have another flare after going off of the IV steroids, I will most likely be starting a new medication called Remicade which has some pretty serious side effects and risks. Fortunately, most patients respond well to the medicine, and it is generally very good at putting and keeping ulcerative colitis in remission. To receive the medicine, I will have to go back to the hospital for a few hours to receive it through an IV, but I shouldn't have to stay in the hospital overnight.
What Can You Do To Help?
Please continue to keep me and my family in your thoughts and prayers. Especially keep Steph in your prayers. Caring for a loved one with a chronic illness takes a tremendous emotional toll, especially when you are juggling the responsibilities and worries of being a wife, mother, and doctor at the same time.
History of Don's Ulcerative Colitis
If you are interested in learning more about ulcerative colitis, here a couple of links that contain some useful information. I have no problems talking to you about my disease if you have questions.
LivingwithUC - http://www.livingwithuc.com/
EverydayHealth - http://www.everydayhealth.com/ulcerative-colitis/ulcerative-colitis-basics.aspx
UpToDate - http://www.uptodate.com/contents/patient-information-ulcerative-colitis?source=search_result&search=ulcerative+colitis&selectedTitle=7~150
MedicineNet - http://www.medicinenet.com/ulcerative_colitis/article.htm
Thank you for all of your love and keeping me and my family in your thoughts and prayers. I am especially grateful for Steph's mom helping Steph out the past 5 days while I have been in the hospital. Also, thank you to Steph's dad and brother for getting some projects done around the house earlier this week.
-Don
What's Wrong with Don?
I have an inflammatory bowel disease (IBD) known as ulcerative colitis (UC). Ulcerative colitis is a disease in which the lining of the colon (large intestine) becomes inflamed and develops sores (ulcers), leading to bleeding and diarrhea. I was initially diagnosed with the disease when I was 20 years old as a junior at Bucknell University. It is fairly common for the disease to manifest itself in young adulthood, and you don't know that you have it until you start experiencing symptoms. There is some history of the disease in my family, but doctors are not sure why the disease develops in some people and not others. Since the beginning of November, I have been experiencing a severe ulcerative colitis flare, which consists of frequent (8-10) bowel movements per day consisting of bloody diarrhea and moderate to severe stomach cramping.
What Happened?
My flare started out mildly in the beginning of November, but progressively got worse near the end of November. It is not known what triggered the flare, but once it started, it didn't stop. I have had flares in the past, but I have usually been able to get them under control within a few weeks by taking various kinds of medication prescribed by my GI doctor (doc who specializes in the digestive system). Unfortunately, this time my flare was not responding to the medications that I was taking from home, and I was maxed out on my doses about a week before Christmas. My symptoms got worse during Christmas weekend, and I saw my GI doctor on Tuesday, December 27th. Since my flare was not improving, he admitted me to the hospital right after my appointment so I could receive some different medicine via an IV to try to stop my flare.
What's Been Going on in the Hospital?
I went to the hospital on the afternoon of Tuesday, December 27th, one day before my 32nd birthday. Am I still in the hospital, but I'm hopeful that I can be released as early as Tuesday, January 3rd.
Tuesday, December 27th
- Appointment w/ GI doctor early afternoon - ordered to be admitted to the hospital right after my appointment
- Several tests performed to rule out infections as the source of my symptoms (chest/abdominal x-rays, blood tests, and c-diff tests administered) - found out next day that all tests came back negative confirming that I am having an ulcerative colitis flare
- Started IV steroids
- Frequency of bowel movements reduced from 10 to 6 for the day
- Energy level low
Wednesday, December 28th
- Continued IV steroids
- Frequency of bowel movements reduced from 6 to 4 for the day with no blood
- Feeling much better and optimistic about leaving the hospital by Friday
- Energy level high
Thursday, December 29th
- Stopped IV steroids in the morning
- Started back on prednisone (oral steroids) in morning
- Frequency of bowel movements reduced to 1 for the day with no blood
- Energy level high
Friday, December 30th
- Ulcerative colitis flare started again at midnight with bloody diarrhea and cramping
- Frequency of bowel movements increased from 1 to 9 for the day with moderate to severe abdominal pain
- Stopped taking prednisone and placed back on IV steroids later in the afternoon
- Additional tests (chest x-ray, blood tests, and tuberculosis test) administered to prepare for a new medication called Remicade next week if my symptoms don't improve over the weekend - test results came back on Sunday and confirmed that I should be able to take Remicade if needed
- Felt pretty down and depressed throughout the day
- Energy level very low
Saturday, December 31st
- Continued IV steroids
- Frequency of bowel movements reduced from 9 to 2 with blood and cramping going away
- Started an exercise routine by walking the halls for 20 minutes, stretching, and doing a few exercises like push ups and curl ups in bed
- Energy level high
Sunday, January 1st
- Continued IV steroids
- Frequency of bowel movements increased from 2 to 4, but there is no blood or cramping
- Continued exercise routine by walking the halls for 30 minutes, stretching, and doing a few exercises like calf raises, push ups, and curl ups
- Energy level high
When Does Don Get To Go Home from the Hospital?
I am hopeful that I will be able to go home from the hospital as early as Tuesday, January 3rd. This will only be the case if I do not have any more bloody diarrhea. Most likely I will be taken off of the IV steroids on the morning of Monday, January 2nd and put back on prednisone (oral steroids). If I make it 24 hours without a flare, I should be able to go home on Tuesday (Wahoo!!!).
What Happens If Don Gets Worse Again?
If I have another flare after going off of the IV steroids, I will most likely be starting a new medication called Remicade which has some pretty serious side effects and risks. Fortunately, most patients respond well to the medicine, and it is generally very good at putting and keeping ulcerative colitis in remission. To receive the medicine, I will have to go back to the hospital for a few hours to receive it through an IV, but I shouldn't have to stay in the hospital overnight.
What Can You Do To Help?
Please continue to keep me and my family in your thoughts and prayers. Especially keep Steph in your prayers. Caring for a loved one with a chronic illness takes a tremendous emotional toll, especially when you are juggling the responsibilities and worries of being a wife, mother, and doctor at the same time.
History of Don's Ulcerative Colitis
- Fall 2000 (age 20) - First sign of ulcerative colitis occurred during my junior year at Bucknell University
- Winter 2000 (age 20) - Diagnosed with ulcerative colitis in the end of my digestive tract (rectum) via a colonoscopy - Treated with some medicine for a month or two and symptoms went away
- Spring 2004 (age 24) - Had an ulcerative colitis flare while living in NYC - colonoscopy revealed that I my colitis had moved up my digestive tract into the first few centimeters of the colon (large intestine) - put on a medication called Asacol to keep my colitis in remission
- Spring 2008 (age 28) - Had a colonoscopy - ulcerative colitis was in remission, but it had progressed a few more centimeters up the bottom portion of the colon
- Spring 2009 (age 29) - Ulcerative colitis flared again - had a sigmoidoscopy and found that my ulcerative colitis progressed through the entire sigmoid colon (bottom portion of large intestine) - put on a different medication called Lialda and treated the flare with a medication called Rowasa - flare subsided within a few weeks
- Fall 2009 (age 29) - Ulcerative colitis flared again - added prednisone (oral steroids) to my medication for about a month to calm down the flare - about a month later, I began experiencing severe pain in my left hip due to an effusion which was later attributed to my ulcerative colitis, and I had the effusion drained with a very long needle (I swear that needle must have been at least a foot long)
- Winter 2010 (age 30) - Added a new medication to treat my ulcerative colitis called azathioprine over the long term in addition to taking Lialda
- Spring 2011 (age 31) - Had a colonoscopy in April which revealed that my ulcerative colitis had progressed through the entire left side of my colon. I had a minor ulcerative colitis flare shortly after my colonoscopy, and it was treated with prednisone (oral steroids) and a hydrocortisone enema for about a month when it eventually subsided
- Fall 2011-Present (age 31) - Severe ulcerative colitis flare - treatment with max doses of Lialda, prednisone, azathioprine, and Rowasa enemas could not get the flare under control - admitted to the hospital on December 27th since I was having 8-10 bowel movements a day with bloody diarrhea and moderate to severe abdominal pain - placed on IV steroids in the hospital - first round of IV steroids helped initially but flare resumed within 12 hours of being taken off of the IV steroids - put on a second round of IV steroids for twice as long
If you are interested in learning more about ulcerative colitis, here a couple of links that contain some useful information. I have no problems talking to you about my disease if you have questions.
LivingwithUC - http://www.livingwithuc.com/
EverydayHealth - http://www.everydayhealth.com/ulcerative-colitis/ulcerative-colitis-basics.aspx
UpToDate - http://www.uptodate.com/contents/patient-information-ulcerative-colitis?source=search_result&search=ulcerative+colitis&selectedTitle=7~150
MedicineNet - http://www.medicinenet.com/ulcerative_colitis/article.htm
Thank you for all of your love and keeping me and my family in your thoughts and prayers. I am especially grateful for Steph's mom helping Steph out the past 5 days while I have been in the hospital. Also, thank you to Steph's dad and brother for getting some projects done around the house earlier this week.
-Don
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