allieinwonder
Moderator
Hey everyone,
this is an update and a rant, all in the same post!
My last thread, "Pill can results", ended with the pill cam coming back normal. I want to get a copy of photos from this, because it was really hard to believe that is was normal, but I haven't been able to get that done since I am in the states right now and the pill can was done in Germany.
After the pill cam was normal, I decided to go the Rheumy route. My good GI in Germany (the one that knew something is wrong, and kept working with me and decided it must be crohn's despite the normal colonoscopy and SBFT and ordered the pill cam) told me that a lot of my symptoms were autoimmune related, and he thought it might be lupus. I have joint pain in my wrists, cracked corners of my mouth, hair loss (on head, eyebrows, legs, even my lady parts, and rashes all over my body), etc. I didn't believe him at first, because I didn't think my symptoms matched lupus, because of the severe D and abdominal pain.
A week and a half ago I saw my new primary care here in Georgia, and she was amazing. Best primary care I have ever had. I brought documents with all of my symptoms, pictures of symptoms, and a complete medical history, and she spent 45 minutes going over everything with me. She said she has had patients like me before: I am very sick, but it is very hard to say why or what it is. She said the last girl she treated like me took 3 years to get blood tests to be positive for her autoimmune illness, and she kept going with her the entire time. She said going to the Rheumy was the best thing to do and gave me a refferal. She tested my B12 levels again, since they were low in April and my GI thought it was nothing, and said if they were low again I was going to be put on supplements. they were low, so I'm on B12 tablets right now, and if my B12 is low again later I will be put on B12 shots. She did a culture of one of my mouth ulcers, but she only tested for herpes, and it was negative.
My Rheumy appt is Monday. I am hoping and praying he can help me finally figure out whats wrong. I know it isn't crohns at this point, how could it be with EVERYTHING coming back normal? But i know its not IBS. I posted a thread on a forum for lupus (I have loved the feedback I have gotten here), and someone that responded has lupus and IBS, and her lupus makes her IBS severe, mimicking crohns. I also had listed my severe pain I get when I have sex with my husband, and she said she has the same thing because her lady parts are inflammed from the lupus.
I think I have finally found my answer. But I am so tired of this journey I have gone through. I am now taking 1-5 tramadol a day, every day, to not scream in pain and stay in bed. I have not seen a solid bowel movement in months. I'm pretty sure I have an anal fissure because I bleed heavily every time I have a BM (and it is very painful). My hemmie is three times the size it used to be. I sleep 10 - 12 hours a day. And with all of this, and not having a name for whats going on, I feel like a complete loser. what if the rheumy can't help me? What if all of that comes back normal too? What will I do then? I'm also really upset that I pursued crohn's for so long, to only look like an idiot in the end. What if the same thing happens with the Rheumy? I watch medical mysteries sometimes, and I am one of those people. When will I get my happy ending?
With my husband and I being in two different countries, with the time differences and him being in the Army, we don't get to talk much. When we do talk, we talk about my illness. When can that stop? He says he is burned out on being a "caregiver", and he has been reading this book (the tough and tender caregiver), and he has become very bitter and angry about the entire situation. I can tell he has not accepted my illness, and he agrees. But how can he accept an illness that doesn't have a name to it?
I am just basically burning out. I am trying to be a normal college student, and right now I just look forward to the times where I can be in bed watching tv. My sorority sisters are starting to yell at me for not being more active in the sorority. We have a dance competition coming up, and I am a professional dancer, so they are requiring me to be in it. But it hurts too bad right now to dance. My abs especially. And my tramadol isn't working as well anymore. They keep telling me if I don't participate in certain things I wont get enough "participation points" and I wont get to go to semi-formal at the end of the semester. I feel guilty, but I am wanting to give up! And I have two and a half months more of this to go! :yfrown:
OK, I think I am going to stop there. I am just so tired of being the sick girl that doesn't know whats wrong, so she is probably crazy. I'm just so tired of being strong and being patient. I want this over NOW. Lupus has the same treatment as crohns...can someone just give me some %^$# pred and get it over with already???
:sign0085:
this is an update and a rant, all in the same post!
My last thread, "Pill can results", ended with the pill cam coming back normal. I want to get a copy of photos from this, because it was really hard to believe that is was normal, but I haven't been able to get that done since I am in the states right now and the pill can was done in Germany.
After the pill cam was normal, I decided to go the Rheumy route. My good GI in Germany (the one that knew something is wrong, and kept working with me and decided it must be crohn's despite the normal colonoscopy and SBFT and ordered the pill cam) told me that a lot of my symptoms were autoimmune related, and he thought it might be lupus. I have joint pain in my wrists, cracked corners of my mouth, hair loss (on head, eyebrows, legs, even my lady parts, and rashes all over my body), etc. I didn't believe him at first, because I didn't think my symptoms matched lupus, because of the severe D and abdominal pain.
A week and a half ago I saw my new primary care here in Georgia, and she was amazing. Best primary care I have ever had. I brought documents with all of my symptoms, pictures of symptoms, and a complete medical history, and she spent 45 minutes going over everything with me. She said she has had patients like me before: I am very sick, but it is very hard to say why or what it is. She said the last girl she treated like me took 3 years to get blood tests to be positive for her autoimmune illness, and she kept going with her the entire time. She said going to the Rheumy was the best thing to do and gave me a refferal. She tested my B12 levels again, since they were low in April and my GI thought it was nothing, and said if they were low again I was going to be put on supplements. they were low, so I'm on B12 tablets right now, and if my B12 is low again later I will be put on B12 shots. She did a culture of one of my mouth ulcers, but she only tested for herpes, and it was negative.
My Rheumy appt is Monday. I am hoping and praying he can help me finally figure out whats wrong. I know it isn't crohns at this point, how could it be with EVERYTHING coming back normal? But i know its not IBS. I posted a thread on a forum for lupus (I have loved the feedback I have gotten here), and someone that responded has lupus and IBS, and her lupus makes her IBS severe, mimicking crohns. I also had listed my severe pain I get when I have sex with my husband, and she said she has the same thing because her lady parts are inflammed from the lupus.
I think I have finally found my answer. But I am so tired of this journey I have gone through. I am now taking 1-5 tramadol a day, every day, to not scream in pain and stay in bed. I have not seen a solid bowel movement in months. I'm pretty sure I have an anal fissure because I bleed heavily every time I have a BM (and it is very painful). My hemmie is three times the size it used to be. I sleep 10 - 12 hours a day. And with all of this, and not having a name for whats going on, I feel like a complete loser. what if the rheumy can't help me? What if all of that comes back normal too? What will I do then? I'm also really upset that I pursued crohn's for so long, to only look like an idiot in the end. What if the same thing happens with the Rheumy? I watch medical mysteries sometimes, and I am one of those people. When will I get my happy ending?
With my husband and I being in two different countries, with the time differences and him being in the Army, we don't get to talk much. When we do talk, we talk about my illness. When can that stop? He says he is burned out on being a "caregiver", and he has been reading this book (the tough and tender caregiver), and he has become very bitter and angry about the entire situation. I can tell he has not accepted my illness, and he agrees. But how can he accept an illness that doesn't have a name to it?
I am just basically burning out. I am trying to be a normal college student, and right now I just look forward to the times where I can be in bed watching tv. My sorority sisters are starting to yell at me for not being more active in the sorority. We have a dance competition coming up, and I am a professional dancer, so they are requiring me to be in it. But it hurts too bad right now to dance. My abs especially. And my tramadol isn't working as well anymore. They keep telling me if I don't participate in certain things I wont get enough "participation points" and I wont get to go to semi-formal at the end of the semester. I feel guilty, but I am wanting to give up! And I have two and a half months more of this to go! :yfrown:
OK, I think I am going to stop there. I am just so tired of being the sick girl that doesn't know whats wrong, so she is probably crazy. I'm just so tired of being strong and being patient. I want this over NOW. Lupus has the same treatment as crohns...can someone just give me some %^$# pred and get it over with already???
:sign0085:
I really hope you're able to feel that way soon too (or at least feel like like a normal human being again!).