- Joined
- Nov 16, 2012
- Messages
- 10
I am new to this forum and I'm here because a of lately I have been extremely overwhelmed with the status of my Crohn's disease. I feel like I have a good support system but I need to reach out to those who might better understand me. I am a 27 year old woman and I was diagnosed a little over 5 years ago. When I first became ill my symptoms ranged from nausea, vomiting, severe diarrhea, cramping, fatigue, night sweats, weight loss of roughly 70 or more pounds, difficulty swallowing and mouth ulcers. I started with my primary care doctor when the symptoms were still tolerable and he treated me with Nexium for ulcers and GERD.
Eventually the symptoms worsened the weight loss became more severe along with worsening symptoms to the point I could barely swallow and what I did came almost immediately out. I finally had bloodwork done and an endoscopy and colonoscopy ordered. The morning of my scopes I briefly blacked out in the shower from I'm assuming lack of nutrition and dehydration. After the tests I was admitted in the hospital with a definite diagnosis of Crohn's disease of my esophagus, small intestine and large intestine and also gastritis and stomach ulcers. I was started on high doses of prednisone, potassium and other supplements I was lacking. After being released some of my symptoms had improved with the prednisone but the side effects were not exactly a good time either. I ballooned up gaining back all that weight in very quick amount of time. I was extremely anxious, mean and jittery. I broke out with acne and my face was so puffy. I would wake up in the middle of the night drenched in sweat.
My gastroenterologist weaned me off prednisone eventually and started me on 6mp and I was still on Zantac. The 6mp did nothing for me. I was then started on Flagyl and Rifampin, still couldn't get in a remission. Then came Entocort, which cost me almost $400 a month with insurance, still nothing. Then came Humira which my doc was reluctant due to possible lymphoma, I finally felt somewhat "normal" once I started but over the course of this time and medications each of my yearly scopes showed no improvement in my colon, my esophagus had healed fine. In October 2011 I came down with C. diff while on the Humira, it was one of the worst experiences ever and completely wiped me out. After the c. Diff cleared I basically had to start from scratch and had to increase my Humira which apparently was not ok with my insurance because my copay jumped to almost $500 a month. Due to lack of finances my doc then switched me to Cimzia my scopes still showed little improvement so then came Remicade. I received 2 doses of that which brings me to present time in which I started having abdominal cramps so severe I could barely stand, I was vomiting frequently and having bloody diarrhea. My gastro prescribed Donnatol and the symptoms still continued they ordered an abdominal ct scan which showed severe active crohn's worse thickening and an abscess near my ileum.
My gastro said medicine is not and probably will not help at this point and set me up to see a colorectal surgeon on Monday. I am overwhelmed, scared, relieved, tired and every other emotion you can possibly have. I have come to terms with the idea that surgery might offer me my health and a shot at normalcy again. I'm just worried if the surgery requires a bag how will it affect me mentally and physically at an age where I should be in my prime. I am not married and I don't have children. I have been dating someone for over a year and part of me says I should end the relationship before things get too serious so I don't make his life anymore complicated until I can get better. Sorry this is so long. It may not make sense, so if any part is not clear please ask. I'm emotional and running on little sleep and its hard to fit almost 6 years of health history on here. I appreciate any incite you all can offer me. I look forward to reading through others experiences and hopefully will be able to feel more secure knowing I'm not alone that others have fought this same fight.
Eventually the symptoms worsened the weight loss became more severe along with worsening symptoms to the point I could barely swallow and what I did came almost immediately out. I finally had bloodwork done and an endoscopy and colonoscopy ordered. The morning of my scopes I briefly blacked out in the shower from I'm assuming lack of nutrition and dehydration. After the tests I was admitted in the hospital with a definite diagnosis of Crohn's disease of my esophagus, small intestine and large intestine and also gastritis and stomach ulcers. I was started on high doses of prednisone, potassium and other supplements I was lacking. After being released some of my symptoms had improved with the prednisone but the side effects were not exactly a good time either. I ballooned up gaining back all that weight in very quick amount of time. I was extremely anxious, mean and jittery. I broke out with acne and my face was so puffy. I would wake up in the middle of the night drenched in sweat.
My gastroenterologist weaned me off prednisone eventually and started me on 6mp and I was still on Zantac. The 6mp did nothing for me. I was then started on Flagyl and Rifampin, still couldn't get in a remission. Then came Entocort, which cost me almost $400 a month with insurance, still nothing. Then came Humira which my doc was reluctant due to possible lymphoma, I finally felt somewhat "normal" once I started but over the course of this time and medications each of my yearly scopes showed no improvement in my colon, my esophagus had healed fine. In October 2011 I came down with C. diff while on the Humira, it was one of the worst experiences ever and completely wiped me out. After the c. Diff cleared I basically had to start from scratch and had to increase my Humira which apparently was not ok with my insurance because my copay jumped to almost $500 a month. Due to lack of finances my doc then switched me to Cimzia my scopes still showed little improvement so then came Remicade. I received 2 doses of that which brings me to present time in which I started having abdominal cramps so severe I could barely stand, I was vomiting frequently and having bloody diarrhea. My gastro prescribed Donnatol and the symptoms still continued they ordered an abdominal ct scan which showed severe active crohn's worse thickening and an abscess near my ileum.
My gastro said medicine is not and probably will not help at this point and set me up to see a colorectal surgeon on Monday. I am overwhelmed, scared, relieved, tired and every other emotion you can possibly have. I have come to terms with the idea that surgery might offer me my health and a shot at normalcy again. I'm just worried if the surgery requires a bag how will it affect me mentally and physically at an age where I should be in my prime. I am not married and I don't have children. I have been dating someone for over a year and part of me says I should end the relationship before things get too serious so I don't make his life anymore complicated until I can get better. Sorry this is so long. It may not make sense, so if any part is not clear please ask. I'm emotional and running on little sleep and its hard to fit almost 6 years of health history on here. I appreciate any incite you all can offer me. I look forward to reading through others experiences and hopefully will be able to feel more secure knowing I'm not alone that others have fought this same fight.
