The Woes of Diagnosis #crohn'ssucks
I just returned home from yet another hospital stay. This time I chose Scott & White Hospital in Temple, Texas to check out their ER and all their available testing equipment. I figure I've already met my insurance deductible this year, might as well have some fun.
On January 22nd I checked in with all the usual symptoms of dehydration, vomiting and diarrhea. My in-laws are very active with S&W through their board and various charitable organizations and were instrumental in helping us get the best care possible there. I will forever be grateful for their help.
S&W hooked me up with a team of no less than 5 GI's and consults from the head of the GI department. All were wonderful guys with great bedside manners and a thirst to find what was slowly trying to kill me. I do have to say this though--several looked to be about the same age as my kids... I'm not sure one could even really shave yet. Is this because I am staring 42 in the face? Will I be that "old lady" who thinks all the doctors are 12?
OK, sorry I digress.
To make a long story short, I under went several various tests. I drank endless amounts of barium and movi-prep (gallons of laxative solution) and rolled into big machines in order to light up the technician's computer screens with my unruly gut. I did a special MRI test that I have now forgotten the name of which found an area of inflamed intestine so a scope was the next plan of action. There were 3 scope procedures, 1 down the throat and 2 through my ileostomy. The first 2 scopes were not able to get to the inflamed area of my innards so the docs conversed for a bit and decided a 3rd scope was in order. The last scope required a special doctor with a special extra long scope to try to sneak a peak at a problem area in my gut. He is not located at S&W so an arrangement was made for him to come after his regular practice at another clinic was finished and scope me for my team of GIs. The scope which was done under sedation (thankfully) wound a camera through a huge portion of my intestines looking for the culprit of my illness in hopes of snatching a biopsy. No luck was had. It wasn't long enough to reach the area and therefore no biopsies were made. So back to the drawing board we went.
I must add here, after one of the MRIs the team told us they were almost certain this was Crohn's disease because it fit some of the criteria. I was in no mood to hear this and told them so. I think it stumped them when I was so adamant that it not be Crohn's. I am familiar with Crohn's after 10 years of living with UC and I didn't want ANY part of it. My poor hubby was at a loss too, we desperately wanted answers and here was a possible answer and I was refusing to acknowledge it. The GI team came up with a plan that I could live with, if they would prove it was Crohn's some way I would be willing to consider it. (Ha, like I really had any kind of choice in the matter.)
When the scopes failed to produce evidence that Crohn's had indeed taken up residence in my small bowel the Camera Pill was introduced. This is a small camera enclosed in a capsule that takes 50 thousand or so pictures of the intestines as it makes it's way through the maze. It's honestly quite amazing and a little bit sci-fi with a flashing blue light like a beacon at sea in the dark of night. This little booger worked. It located 2 pretty nasty ulcers just hanging quite happily in my gut. These uninvited guests were the reason I spent 40+ days in the hospital over the last 10 weeks. The reason I've lost 12 pounds and look like death. I hate them. No, I loathe them.
This was the proof needed to officially write "Crohn's Disease" at the top of my chart.
It broke my heart.
It broke the last of my strength.
I feel very defeated.
I am lost and have no sense of direction anymore.
The happy ending to this story is that we know what is wrong and why my body was not behaving. The real ending is that I feel like the villain won.
I began a steroid treatment called Entocort which is designed to target the bowel only and rarely has side effects like those of Prednisone. I hope this is true, I HATE Prednisone. This little drug should help get control of the ulcers and send them packing. I think it's already working because many of my symptoms have lightened up and I am feeling better as well. I also will begin Humira injections every 2 weeks to control the Crohn's and supposedly "return to normal life." Like life will ever be normal again, no-I'll have to find a new normal to live normally with this stupid Crohn's diagnosis. I know how this roller coaster goes, I've been on one similar to it called Ulcerative Colitis. It's not fun. You sit next to the scary clown as you wind through the dark creepy tunnels.
Here's a great info site on Crohn's Disease. I don't have the energy to explain it because I'm still in denial.
This is where I'm at: I'm mad. I'm broken. I'm saddened by the fact that my body has turned on me once again. I don't feel like fighting...again. I was just so happy before all this started. I felt healthy. I ate right. I exercised. I took supplements to replace what my stupid messed up digestive system refused to absorb from food. I took care of my body and it still turned on me. WTH?
Now that I'm finally home I need to get a game plan together. Yeah, what I really want to do is crawl into bed and not surface again. This has to be a bad dream right? What else can I possibly do that I wasn't doing before to stay well? Oh right, I can add a big gun biologic medicine to be injected into my body every 2 weeks that will "hopefully" keep the disease in check. And as a bonus there is a whole list of wonderful possible side effects that go with this medicine. YAY ME.
Pardon me for my lack of enthusiasm, I'm just not feeling the love right now.
I'm finding to hard to respond to all the well wishes and words of love and encouragement I have been showered in by family and friends. I want to, I really do. My fingers hover over the keys but the words needed to respond just don't come right now. It's an incredibly beautiful thing to know you are so loved and supported but I'm finding it very overwhelming at the same time. I hate that I feel this way too. Please, please don't be offended, I really do love and appreciate it. I read every one and I am storing all of it up like a hoarder. I need the support, love and encouragement but my mind is incapable of fully grasping it right now. Plus, I'm a little pissed and in denial of the stupid diagnosis and that's not helping matters. Please forgive me if I seem distant and cold. I'm having a moment. I'm processing. I'm lost at sea swimming in an armored suit. I'm sorry for when I behave badly, it's no excuse I know, but my mind is trying to digest what my gut can't.
On January 22nd I checked in with all the usual symptoms of dehydration, vomiting and diarrhea. My in-laws are very active with S&W through their board and various charitable organizations and were instrumental in helping us get the best care possible there. I will forever be grateful for their help.
S&W hooked me up with a team of no less than 5 GI's and consults from the head of the GI department. All were wonderful guys with great bedside manners and a thirst to find what was slowly trying to kill me. I do have to say this though--several looked to be about the same age as my kids... I'm not sure one could even really shave yet. Is this because I am staring 42 in the face? Will I be that "old lady" who thinks all the doctors are 12?
OK, sorry I digress.
To make a long story short, I under went several various tests. I drank endless amounts of barium and movi-prep (gallons of laxative solution) and rolled into big machines in order to light up the technician's computer screens with my unruly gut. I did a special MRI test that I have now forgotten the name of which found an area of inflamed intestine so a scope was the next plan of action. There were 3 scope procedures, 1 down the throat and 2 through my ileostomy. The first 2 scopes were not able to get to the inflamed area of my innards so the docs conversed for a bit and decided a 3rd scope was in order. The last scope required a special doctor with a special extra long scope to try to sneak a peak at a problem area in my gut. He is not located at S&W so an arrangement was made for him to come after his regular practice at another clinic was finished and scope me for my team of GIs. The scope which was done under sedation (thankfully) wound a camera through a huge portion of my intestines looking for the culprit of my illness in hopes of snatching a biopsy. No luck was had. It wasn't long enough to reach the area and therefore no biopsies were made. So back to the drawing board we went.
I must add here, after one of the MRIs the team told us they were almost certain this was Crohn's disease because it fit some of the criteria. I was in no mood to hear this and told them so. I think it stumped them when I was so adamant that it not be Crohn's. I am familiar with Crohn's after 10 years of living with UC and I didn't want ANY part of it. My poor hubby was at a loss too, we desperately wanted answers and here was a possible answer and I was refusing to acknowledge it. The GI team came up with a plan that I could live with, if they would prove it was Crohn's some way I would be willing to consider it. (Ha, like I really had any kind of choice in the matter.)
 |
| pill cam |
This was the proof needed to officially write "Crohn's Disease" at the top of my chart.
It broke my heart.
It broke the last of my strength.
I feel very defeated.
I am lost and have no sense of direction anymore.
The happy ending to this story is that we know what is wrong and why my body was not behaving. The real ending is that I feel like the villain won.
I began a steroid treatment called Entocort which is designed to target the bowel only and rarely has side effects like those of Prednisone. I hope this is true, I HATE Prednisone. This little drug should help get control of the ulcers and send them packing. I think it's already working because many of my symptoms have lightened up and I am feeling better as well. I also will begin Humira injections every 2 weeks to control the Crohn's and supposedly "return to normal life." Like life will ever be normal again, no-I'll have to find a new normal to live normally with this stupid Crohn's diagnosis. I know how this roller coaster goes, I've been on one similar to it called Ulcerative Colitis. It's not fun. You sit next to the scary clown as you wind through the dark creepy tunnels.
Here's a great info site on Crohn's Disease. I don't have the energy to explain it because I'm still in denial.
This is where I'm at: I'm mad. I'm broken. I'm saddened by the fact that my body has turned on me once again. I don't feel like fighting...again. I was just so happy before all this started. I felt healthy. I ate right. I exercised. I took supplements to replace what my stupid messed up digestive system refused to absorb from food. I took care of my body and it still turned on me. WTH?
Now that I'm finally home I need to get a game plan together. Yeah, what I really want to do is crawl into bed and not surface again. This has to be a bad dream right? What else can I possibly do that I wasn't doing before to stay well? Oh right, I can add a big gun biologic medicine to be injected into my body every 2 weeks that will "hopefully" keep the disease in check. And as a bonus there is a whole list of wonderful possible side effects that go with this medicine. YAY ME.
Pardon me for my lack of enthusiasm, I'm just not feeling the love right now.
I'm finding to hard to respond to all the well wishes and words of love and encouragement I have been showered in by family and friends. I want to, I really do. My fingers hover over the keys but the words needed to respond just don't come right now. It's an incredibly beautiful thing to know you are so loved and supported but I'm finding it very overwhelming at the same time. I hate that I feel this way too. Please, please don't be offended, I really do love and appreciate it. I read every one and I am storing all of it up like a hoarder. I need the support, love and encouragement but my mind is incapable of fully grasping it right now. Plus, I'm a little pissed and in denial of the stupid diagnosis and that's not helping matters. Please forgive me if I seem distant and cold. I'm having a moment. I'm processing. I'm lost at sea swimming in an armored suit. I'm sorry for when I behave badly, it's no excuse I know, but my mind is trying to digest what my gut can't.
Love you lady. YOU are truly an inspiration.
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