I have had several people talk to me about my health lately and have said "I can't believe Crohn's gave you aHUS"....or "I can't believe you had to get your thyroid removed due to aHUS."
The above are not the case AT ALL. So I wanted to take a few minutes to tell you the differences in these and my health history with the 3 of them.
Let me first start this by saying, ALL THREE DISEASES ARE DIFFERENT!
Crohn's Disease - diagnosed 2012.
https://www.nlm.nih.gov/medlineplus/crohnsdisease.html
Crohn's disease causes inflammation of the digestive system. It is one of a group of diseases called inflammatory bowel disease. Crohn's can affect any area from the mouth to the anus. It often affects the lower part of the small intestine called the ileum.
When I was diagnosed with Crohn's Disease, I had been ignoring it for a very long time. It wasn't until I had bleeding for more than a week before I contacted a GI and ended up at the ER.
Because of this, I had a lot of scar tissue in the small intestine, which caused narrowing in the intestine. I got MANY obstructions.
In 2013, I underwent a lower right colectomy. This basically means they removed about 18 inches of my small intestine, my ileocecal valve, my appendix, and a few inches of my large intestine.
I do still have some issues with my Crohn's, but for the most part....I follow the diet I know works for me and I keep up with my symptoms and see my GI regularly.
This is something that has no cure.
Grave's Disease (autoimmune hyper thyroidism) - diagnosed 2013.
https://www.nlm.nih.gov/medlineplus/ency/article/000358.htm
Graves disease is the most common cause of hyperthyroidism. It is due to an abnormal immune system response that causes the thyroid gland to produce too much thyroid hormone. Graves disease is most common in women over age 20. But the disorder can occur at any age and can affect men as well.
After having crazy moments (literally), high heart rates, hot flashes, hair loss, drastic weight loss, major swelling on my neck; I went and got checked out. After multiple blood tests, it was confirmed that I had Grave's Disease.
For 2 years, I tried the medications. I failed the medications. My Grave's was not treatable with medication. So June 2015, I had a total thyroidectomy. Since, I am on medication because I now have no thyroid to produce the hormones needed.
atypical Hemolytic Uremic Syndrome (aHUS) - diagnosed October 2014.
http://www.ncbi.nlm.nih.gov/books/NBK1367/
Atypical hemolytic uremic syndrome (aHUS) is a rare syndrome of hemolysis, thrombocytopenia, and renal insufficiency. Genetic mutations in the alternate pathway of complement are well recognized as the cause in more than 60% of patients affected by this thrombotic microangiopathy.
September 2014, I was on a medication for Crohn's (a low dose chemo drug) and had liver failure from it. Because of this, it triggered the genetic mutation I didn't know I had, called aHUS. This put me in kidney failure. Caused my platelets to crash. Blood counts dropped, etc.
I currently get treatment for aHUS every 10 days via IV. This is something that has no cure.
So, please take note that while there are some similarities in my diseases, they are not causing each other. They are all very different and are treated very differently.
Showing posts with label Crohn's disease. Show all posts
Showing posts with label Crohn's disease. Show all posts
Thursday, December 10, 2015
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, 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.
Saturday, September 22, 2012
Life
It's been a while since I have had a post.
What's going on in our world?
I am back on the Humira shots and *crosses fingers* so far, I am doing well. I go to my GI this week and hopefully he will start weening me off of the Prednisone. I still have some days where I feel like absolute poo, but overall, I am doing well. I have had some sickness since I gave the ole immune system the boot again. I had a sinus infection and a stomach flu within a week of each other. YUCK!!!!
Other news? hmm.
I got a promotion at work. WOOHOO!!! I am the lead over my department now. I have taken on more responsibility and I am busy ALL day. Which I prefer. Makes the days go by faster.
Other than that, nothing really new with us. Declin is turning 5 this week. I can't believe it!!!!
Well, there is my update. Hope everyone is doing well!
What's going on in our world?
I am back on the Humira shots and *crosses fingers* so far, I am doing well. I go to my GI this week and hopefully he will start weening me off of the Prednisone. I still have some days where I feel like absolute poo, but overall, I am doing well. I have had some sickness since I gave the ole immune system the boot again. I had a sinus infection and a stomach flu within a week of each other. YUCK!!!!
Other news? hmm.
I got a promotion at work. WOOHOO!!! I am the lead over my department now. I have taken on more responsibility and I am busy ALL day. Which I prefer. Makes the days go by faster.
Other than that, nothing really new with us. Declin is turning 5 this week. I can't believe it!!!!
Well, there is my update. Hope everyone is doing well!
Thursday, August 23, 2012
root canal and GI visit
Well today was definitely an exciting day. (insert sarcasm)
The tooth that was giving me problems a few weeks ago, well it requires a root canal and crown. Today was the first step of that process. Root canal is complete, I have a temporary filling until I go back for the crown fitting and placement.
Anyone that knows me, knows I would rather have my head cut completely off than even step into a dentist office. However, I must admit, I think I found a great dentist this time. He is so understanding to my fears and worries. It didn't hurt at all today. If anyone is looking for a good dentist in the DFW area, look up Sam Koo in Irving. I highly recommend him.
After spending an hour or so at the dentist, it was time to head over to my GI specialist.
It was decided that now that all my infections are cleared up, I am able to go back on Humira. I will start my injections again this Sunday. I am honestly excited to get the ball rolling. I know that I will be down and out for a while, but I have to look at the big picture and pray for remission.
We also decided to go from 20mg to 10mg per day on my Prednisone. This makes me SUPER happy. In the 2 weeks that I have been back on 20mg, I have gained probably 10 pounds and have not been sleeping AT ALL.
I did also learn from some blood work done recently, that my Hepatitis B vaccination is NOT active. The Hep A vac is active, but apparently the Hep B didn't work with me. So I will be doing the 6 month series for the Hep C vac again. How strange!!!
So, that's where I am at today. Fun stuff, right? :)
The tooth that was giving me problems a few weeks ago, well it requires a root canal and crown. Today was the first step of that process. Root canal is complete, I have a temporary filling until I go back for the crown fitting and placement.
Anyone that knows me, knows I would rather have my head cut completely off than even step into a dentist office. However, I must admit, I think I found a great dentist this time. He is so understanding to my fears and worries. It didn't hurt at all today. If anyone is looking for a good dentist in the DFW area, look up Sam Koo in Irving. I highly recommend him.
After spending an hour or so at the dentist, it was time to head over to my GI specialist.
It was decided that now that all my infections are cleared up, I am able to go back on Humira. I will start my injections again this Sunday. I am honestly excited to get the ball rolling. I know that I will be down and out for a while, but I have to look at the big picture and pray for remission.
We also decided to go from 20mg to 10mg per day on my Prednisone. This makes me SUPER happy. In the 2 weeks that I have been back on 20mg, I have gained probably 10 pounds and have not been sleeping AT ALL.
I did also learn from some blood work done recently, that my Hepatitis B vaccination is NOT active. The Hep A vac is active, but apparently the Hep B didn't work with me. So I will be doing the 6 month series for the Hep C vac again. How strange!!!
So, that's where I am at today. Fun stuff, right? :)
Tuesday, August 21, 2012
Crohn's disease and Gluten Free
I have decided that I really want to track my progress and disease on my blog. So that I can keep up with what is going on and look back on my progression, or series of events. But also so that if I can help anyone else through this battle of Crohn's disease and going Gluten Free, I can. Please feel free to share my blog address with anyone who you might think would be interested.
I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.
This is my personal experience thus far:
I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.
I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.
This is just what I am doing right now, as recommended by my GI specialist.
Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.
I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.
NO POPCORN.
As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.
Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.
www.Allergyfreegirl.com
http://www.katzglutenfree.com/Default.asp
http://glutenfreehomemaker.com/
https://sugarandspicemarket.com/
http://betterbatter.org/
http://www.glutenfreesaver.com/
If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.
I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.
I am going to start with an email that I sent someone with Crohn's disease and Celiac disease today.
This is my personal experience thus far:
I have Crohn’s disease (was just diagnosed in May, but they believe I have had it for 15 years or more without treatment and/or diagnosis). I have an ilium stricture and have not been able to get in remission since being diagnosed. I am hopefully going to start Humira again soon, as I had to stop because I got several infections after the initial loading doses.
I was tested for Celiac disease, and it came back negative. However, my GI specialist feels that I should try to reduce gluten in my diet as much as possible. I am not 100% gluten fee.
This is just what I am doing right now, as recommended by my GI specialist.
Also, eating out and being GF is extremely hard. Unless they have a totally separate GF kitchen, there will be cross contamination.
I do not eat any raw vegetables.
I do not eat any seeds or nuts.
I do not eat any peelings on fruits or vegetables.
I do not eat anything leafy. (spinach, lettuce, etc)
I do not eat anything stringy (no stalks on broccoli or cauliflower. No celery. No string beans. No okra.)
I do not eat any type of beans or peas.
I only eat raw fruit that can be easily broken down (bananas, peeled peaches, peeled apples, peeled pears)
I have found that regular potatoes do not work for me. any recipe with regular potatoes, I substitute with sweet potatoes.
I can eat broccoli florets and cauliflower florets, but they must be cooked to death.
I can eat squash and zucchini, but they must be peeled and have no seeds.
I eat a lot of chicken and fish.
I have tried to cut out red meat as much as possible.
Pork makes me sick almost instantly.
NO POPCORN.
As far as GF, I have found several websites were you can buys GF ingredients for way cheaper than the stores. I buy a lot of mixes and flours and cookies, etc through these sites.
Each person is different on what they like as far as GF. Personally, I am not a fan of the rice pasta, but a lot of people seem to like it. To me, its too much like rice to be pasta. haha.
www.Allergyfreegirl.com
http://www.katzglutenfree.com/Default.asp
http://glutenfreehomemaker.com/
https://sugarandspicemarket.com/
http://betterbatter.org/
http://www.glutenfreesaver.com/
If you add me on Facebook, I have “liked” a ton of GF pages, and they often advertise sales, etc on FB and you can sign up for their email lists to get email updates, recipes as well. I try to always “share” the deals, good recipes, etc on FB.
I hope all this helps. Please feel free to comment and/or email me with any questions. We are all in this together and I would love a new Crohn’s/GF friend.
Wednesday, August 1, 2012
Humira side effects - week 1
I would like to use this blog as a diary of my side effects, etc.
After speaking with my GI's nurse today, I am experiencing some of the side effects associated with the Humira injections.
1. I have exhaustion at a level that I cannot even explain. If I sit too long without talking, working, occupying my brain....I could literally fall asleep wherever I am. It's like the exhaustion takes over and I can't even think straight. This is described as my immune system starting to lower and shut down, then my body goes into protection mode.
2. I am having very vivid, weird dreams when I am sleeping. The dreams will carry over from night to night and continue on. I have never had dreams like this before.
3. I am in a brain fog. I forget that I have done things, etc. Its like it completely is gone from my memory.
While these are VERY normal side effects, they keep me on my toes. I am having to learn to listen to my body more and relax (lay down, etc) when I feel like I need to. I am writing things down more so that when I don't remember, I can look back.
This is all very real and scary for me at times....and other times, I am realizing this is just a way of life for me now and that's what I need to adjust to. I am praying like no other and asking for God to guide me through this new journey of what my life is becoming.
After speaking with my GI's nurse today, I am experiencing some of the side effects associated with the Humira injections.
1. I have exhaustion at a level that I cannot even explain. If I sit too long without talking, working, occupying my brain....I could literally fall asleep wherever I am. It's like the exhaustion takes over and I can't even think straight. This is described as my immune system starting to lower and shut down, then my body goes into protection mode.
2. I am having very vivid, weird dreams when I am sleeping. The dreams will carry over from night to night and continue on. I have never had dreams like this before.
3. I am in a brain fog. I forget that I have done things, etc. Its like it completely is gone from my memory.
While these are VERY normal side effects, they keep me on my toes. I am having to learn to listen to my body more and relax (lay down, etc) when I feel like I need to. I am writing things down more so that when I don't remember, I can look back.
This is all very real and scary for me at times....and other times, I am realizing this is just a way of life for me now and that's what I need to adjust to. I am praying like no other and asking for God to guide me through this new journey of what my life is becoming.
Tuesday, May 29, 2012
medical follow up appointment/Crohn's Disease
Today was the follow up for all of my lab work, colonoscopy, scans, etc over the last few weeks. To say that I am overwhelmed, would be the truth.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
The polyp that was removed during the colonoscopy, came back pre-cancerous. They removed all of it during the colonoscopy, but with my family history of GI cancers, I will have to have a colonoscopy at least every 2 years if not sooner. Cancer is a scary freaking word and it hit me to the core when he said it. Thankfully, it was caught before it turned into anything major and we will be able to monitor it closely.
Next!!! The tests came back postive for autoimmune disorder (which means that my body is attacking itself), positive for Crohn's disease, and positive the ilium stricture.
What this means is that I will continue the 3000 mg of Pentasa a day, 20mg of Prednisone a day, and will be closely monitoring my diet to see what affects foods/drinks have on me.
If I have another flare up, the dr is saying that I will more than likely be put on Humira (which means giving myself injections in the stomach several times a week). He would like to do everything possible to avoid this, as there are MANY risks to Humira and such drugs.
This is life changing for me and something I am not taking lightly at all. I am scared. I am nervous. I am in shock.
I will be doing several more blood tests, skin lab work (for TB, etc), and a bowel xray with barium over the next few weeks. More than likely I will also be reporting to the GI specialist every 2 weeks for a while.
Below is a link that helps explain Crohn's disease for those that are aware (just as I wasn't until a few weeks ago):
http://www.ccfa.org/info/about/crohns
We would like to ask that everyone continue to prayer for us during these times.
Also, I would like to hear opinions, thoughts, prayers, recommendations from anyone that wants to offer about Crohn's disease, etc.
Thursday, May 24, 2012
Medical update/life update
Life has taken a definite spin for us this month.
Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.
Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.
I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.
If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.
Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.
Beginning the first weekend in May, I started having some pretty serious personal health issues. After seeing, my regular dr, a GI specialist, an ER visit, more GI specialist appointments, an ultrasound, and a colonoscopy later…..it is determined that I have Crohn’s disease. And a pretty serious case of it.
Right now, they have me taking 6 anti-inflammatory pills a day and 4 steroid pills a day to try to get everything under control and into remission.
I feel ok, but I am constantly tired and very worried/scared about the outcome of all of this and where this will take us on our journey that WE had planned. We should have known, this isn’t our journey, but it is His journey for us. I am putting all of my trust in our Lord and know that he has a plan for us.
If you guys (if anyone even still reads this blog) don’t mind, please just keep Ben and myself in your prayers. We would love to be covered in prayer during this time in our lives.
Does anyone have any experience with Crohn’s that could give me diet recommendations or any other advise. It would be greatly appreciated.
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