Crohn's Mom
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- Joined
- Mar 9, 2011
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my daughters story...
Hi all..
I am a "Crohn's Mom". My sweet daughter was officially diagnosed in February 2010; however she has been symptomatic since 9 years old when she was suspected of having Crohns; she just turned 18 last week.
I will try and keep this relatively short. My girl is very sick right now and is waiting to have surgery on the 21st of this month. She has been on prednisone, 6mp, Apriso, protonix, and Iron supplements for the past year. And Cipro since her hospitalization in November for severe pain caused by a high grade stricture and abscess. Since being released from the hospital (on 120 mg of prednisone....then 80, and so on..) she has been progressively getting worse. We have had soo many problems with doctors being "afraid" of her because of her being a minor, and others being "afraid" to treat her disease. Finally, in January I had enough of other's recommendations and got her into the Mayo Clinic here. After the 2 years she has suffered, with her symptoms getting worse and all other doctors seemingly confused, one trip to the Mayo clinic and they (seem) to have the answers.
They ran numerous blood tests, tried to do another colonoscopy ( couldn't get in there due to the severe blockage), upper endoscopy and a MR enterography (sp?).
Sadly the MR test showed that she is nothing short of a mess inside. From what I remember off the top of my head, she has a ton of inflammation in the lower right side, illeum, and part of her colon. She also has a very large mass, kind of mid right side,.. from the way the surgeon explained it; it is a bunch of intestines basically twisted, turned, torn and glued itself together. The doctors have said there is no other choice except surgery. We were also informed that is a good possibility that she will loose her right ovary as well due to all the infection that has surrounded it for so long.
Right now she has tapered down on the steroids to 15 mg to get her ready for the surgery and allow the resection to have a better chance of staying together after wards. When she went down from 20mg to 15mg her body began swelling terribly; especially her knees. It was so severe that, overnight, it looked like she had tumors growing out of the sides of her knees and now there are terrible stretch marks all over
I was so scared that her kidney was failing so we took her to the local ER for blood and urine tests. Her kidney function is normal, thankfully! Her doctor called and said that she just needs that surgery so badly and needs to be off those nasty steroids sooner than later.
So that's our story in short. I am scared out of my mind quite frankly as to what this surgery entails and praying with everything I have that it is successful in every way! The doctor wants her to start Remicade infusions (or something similar) as soon as she is healed from her surgery, before this nasty disease has a chance to attack her again.
I am happy to have found this forum; I feel so alone sometimes because people really do not understand that Crohn's is not just a bad case of diarreah , and it can be so debilitating to the one's who have it, and also the care takers who love them so much and feel so helpless.
Hi all..
I am a "Crohn's Mom". My sweet daughter was officially diagnosed in February 2010; however she has been symptomatic since 9 years old when she was suspected of having Crohns; she just turned 18 last week.
I will try and keep this relatively short. My girl is very sick right now and is waiting to have surgery on the 21st of this month. She has been on prednisone, 6mp, Apriso, protonix, and Iron supplements for the past year. And Cipro since her hospitalization in November for severe pain caused by a high grade stricture and abscess. Since being released from the hospital (on 120 mg of prednisone....then 80, and so on..) she has been progressively getting worse. We have had soo many problems with doctors being "afraid" of her because of her being a minor, and others being "afraid" to treat her disease. Finally, in January I had enough of other's recommendations and got her into the Mayo Clinic here. After the 2 years she has suffered, with her symptoms getting worse and all other doctors seemingly confused, one trip to the Mayo clinic and they (seem) to have the answers.
They ran numerous blood tests, tried to do another colonoscopy ( couldn't get in there due to the severe blockage), upper endoscopy and a MR enterography (sp?).
Sadly the MR test showed that she is nothing short of a mess inside. From what I remember off the top of my head, she has a ton of inflammation in the lower right side, illeum, and part of her colon. She also has a very large mass, kind of mid right side,.. from the way the surgeon explained it; it is a bunch of intestines basically twisted, turned, torn and glued itself together. The doctors have said there is no other choice except surgery. We were also informed that is a good possibility that she will loose her right ovary as well due to all the infection that has surrounded it for so long.
Right now she has tapered down on the steroids to 15 mg to get her ready for the surgery and allow the resection to have a better chance of staying together after wards. When she went down from 20mg to 15mg her body began swelling terribly; especially her knees. It was so severe that, overnight, it looked like she had tumors growing out of the sides of her knees and now there are terrible stretch marks all over
I was so scared that her kidney was failing so we took her to the local ER for blood and urine tests. Her kidney function is normal, thankfully! Her doctor called and said that she just needs that surgery so badly and needs to be off those nasty steroids sooner than later. So that's our story in short. I am scared out of my mind quite frankly as to what this surgery entails and praying with everything I have that it is successful in every way! The doctor wants her to start Remicade infusions (or something similar) as soon as she is healed from her surgery, before this nasty disease has a chance to attack her again.
I am happy to have found this forum; I feel so alone sometimes because people really do not understand that Crohn's is not just a bad case of diarreah , and it can be so debilitating to the one's who have it, and also the care takers who love them so much and feel so helpless.
