Hey everyone, my name is Bethany and im new here. I decided to join because I really could use some extra support as well as advise. So here's my story for anyone interested. Be prepared its long and probably pretty boring to most. I just need to let it out, even if no one reads it. Ya know
When I was 15 I started to get sick. I was sick all the time. Chronic fatigue, stomach cramps, nausea, vomiting, diareia, weigh loss, then weight gain then weight loss. It was so frustrating to say the least. I went to many doctors but was told the same thing time and time again, "there's nothing wrong with you" its all in your head, your just a hypochondriac or my favorite, your just depressed". So years went by of this and eventually I just stopped going to the doctor. It wasn't getting me anywhere. Although I did find myself depressed after some time. I thought maybe they're right.
So jump forward about 8 or 9 years. At this point I'm now a mother of two. My daughter whom is 4 and a new little baby boy. Life was normal. Well my normal anyway. Until 3 months after my sons birth when I got dissintary and was sicker then I'd ever been. I lost 60lbs in a matter of 2 months. After that it was like all my other crap decided to intensify. I became sicker and sicker. Always being tired and weak. Even still though no doctor could give me a reason. So I just tried to keep moving forward as best I could.
In the next several years I would have 2 more children and many miscarriages. My 3rd child was born 8 weeks early and my 4th pregnancy had many complications. Both times after giving birth I would get horribly sick. Finally I had enough of no answers from my doctors and decided to do my own research. That's when I learned about Crohn's Disease. I took all my findings to my doctor and demanded to see a GI. Well within 2 weeks time I had my appt, had a colonoscopy and was finally diagnoised with Crohn's.
Since then it's been even more of a battle and I thought it would have gotten better. First 2 meds they put me on gave me pancreatitis. Landing me 2 hospital stays. One for 3+ weeks and another for 6+ weeks and I left with a feeding tube that stayed in for another 4 weeks.
After that it was remacaid, which I became highly allergic to. Then Humira until I move to a new country and my insurance would no longer cover it. So then they tried a couple more things all of which I either became allergic to or just weren't working at all for me. My crohn's has spread from my small intestine and colon through allot of my large bowel and now in my esophagus. Recently my insurance finally approved Humira. So I started that backup. But within 3 weeks I had an allergic reaction called serum sickness. That was the worst of all my allergies by far and I pray I never go through that pain again.
So then what's left? I ask my GI and he says well there's only have 2 medications left available for you. Both being biological instead of immune suppressants. Also neither have as good of results as Humira or remacaid.
In my journey of madness I've also been diagnosed with Raynauds, Fibromyalgia, Chronic Anemia, HS, Chronic Pancreatitis and I've had 4 blood test that are ANA Positive and on the high positive. Chronic Migraines and Seizures. I'm currently being tested for Lupus. Which is so frustrating because of how hard it is to diagnose. Those are only my medical problems. Believe I have developed many mental problems as well over the years.
So how do I find the positive outlook on what seems to be such a bleak over all situation? What happens if these last 2 medications don't work or I become allergic to them as well?
I have tried many of different life style changes. From diet and exercise, to mental and spiritual. Giving every change a good amount of time to take affect with no really positive results. I'm sad frustrated and allot of times I find myself doing the "why me's". I just don't know what to do to make my health much better if even at all. Last week I had a mediport placed in to help with my infusions since my veins are all but gone due to my Raynauds and many IV's hospital stays and infusions. So at least I now have that peace of mind. One poke every time from here on out.
So that's my story. Sorry to all that made it to the end of this. I know it's been ridiculously long.
When I was 15 I started to get sick. I was sick all the time. Chronic fatigue, stomach cramps, nausea, vomiting, diareia, weigh loss, then weight gain then weight loss. It was so frustrating to say the least. I went to many doctors but was told the same thing time and time again, "there's nothing wrong with you" its all in your head, your just a hypochondriac or my favorite, your just depressed". So years went by of this and eventually I just stopped going to the doctor. It wasn't getting me anywhere. Although I did find myself depressed after some time. I thought maybe they're right.
So jump forward about 8 or 9 years. At this point I'm now a mother of two. My daughter whom is 4 and a new little baby boy. Life was normal. Well my normal anyway. Until 3 months after my sons birth when I got dissintary and was sicker then I'd ever been. I lost 60lbs in a matter of 2 months. After that it was like all my other crap decided to intensify. I became sicker and sicker. Always being tired and weak. Even still though no doctor could give me a reason. So I just tried to keep moving forward as best I could.
In the next several years I would have 2 more children and many miscarriages. My 3rd child was born 8 weeks early and my 4th pregnancy had many complications. Both times after giving birth I would get horribly sick. Finally I had enough of no answers from my doctors and decided to do my own research. That's when I learned about Crohn's Disease. I took all my findings to my doctor and demanded to see a GI. Well within 2 weeks time I had my appt, had a colonoscopy and was finally diagnoised with Crohn's.
Since then it's been even more of a battle and I thought it would have gotten better. First 2 meds they put me on gave me pancreatitis. Landing me 2 hospital stays. One for 3+ weeks and another for 6+ weeks and I left with a feeding tube that stayed in for another 4 weeks.
After that it was remacaid, which I became highly allergic to. Then Humira until I move to a new country and my insurance would no longer cover it. So then they tried a couple more things all of which I either became allergic to or just weren't working at all for me. My crohn's has spread from my small intestine and colon through allot of my large bowel and now in my esophagus. Recently my insurance finally approved Humira. So I started that backup. But within 3 weeks I had an allergic reaction called serum sickness. That was the worst of all my allergies by far and I pray I never go through that pain again.
So then what's left? I ask my GI and he says well there's only have 2 medications left available for you. Both being biological instead of immune suppressants. Also neither have as good of results as Humira or remacaid.
In my journey of madness I've also been diagnosed with Raynauds, Fibromyalgia, Chronic Anemia, HS, Chronic Pancreatitis and I've had 4 blood test that are ANA Positive and on the high positive. Chronic Migraines and Seizures. I'm currently being tested for Lupus. Which is so frustrating because of how hard it is to diagnose. Those are only my medical problems. Believe I have developed many mental problems as well over the years.
So how do I find the positive outlook on what seems to be such a bleak over all situation? What happens if these last 2 medications don't work or I become allergic to them as well?
I have tried many of different life style changes. From diet and exercise, to mental and spiritual. Giving every change a good amount of time to take affect with no really positive results. I'm sad frustrated and allot of times I find myself doing the "why me's". I just don't know what to do to make my health much better if even at all. Last week I had a mediport placed in to help with my infusions since my veins are all but gone due to my Raynauds and many IV's hospital stays and infusions. So at least I now have that peace of mind. One poke every time from here on out.
So that's my story. Sorry to all that made it to the end of this. I know it's been ridiculously long.