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10-06-2011, 05:31 PM   #1
allieinwonder
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My Journey Continues

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!

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???

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DXed with Behcets disease December 7th, 2012. Behcets disease is a very rare autoimmune disease that mimics both Crohns and Lupus, attacking blood vessels all over the body, causing inflammation and damage.
www.behcets.com

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10-07-2011, 12:21 PM   #2
Cat-a-Tonic
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Allie, I *do* have some leftover pred that I could send to you... probably not a good idea though, as it'd likely skew test results. I wasn't allowed to be on pred for any of my tests, neither bowel tests nor blood work.

Hopefully the new rheumy will let you at least try out pred after the diagnostic tests are over with. And I hope the rheumy is reallly good and can get you some tests right away so that you don't have to wait any longer. Personally, trying pred was the turning point for me, as you probably know. I felt like my doctors really sat up and started taking me more seriously when I told them that I responded to pred. If you get to try it, I hope it works as well for you as it did for me! It was so nice to feel so awesome and have tons of energy all of a sudden. I really hope you're able to feel that way soon too (or at least feel like like a normal human being again!).

Hang in there, not long to go now until the rheumy appointment. Rest up as much as you can until then. And if your sorority sisters don't understand, well that's their problem! You've had them read the Spoon Theory, right? There's only so much you can do, if they don't understand then they never will (unless they get an illness like this themselves).
10-07-2011, 04:46 PM   #3
allieinwonder
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Thanks for the response.

Oh no, I would never ask you to send me that. My husband keeps asking me if he can just get some online (because you can get RX drugs online, it is illegal, but I'm pretty sure he doesn't care at this point). I agree with you, I think I am going to ask my Rheumy to try out pred after all the tests are done so that it wont get in the way. That way, if I do respond to it, we know its something autoimmune, including IBD and lupus.

I am going to rest as much as I can. I have had my sisters read the spoon theory, but they still don't understand. I went to dance practice yesterday after I wrote this, and decided I wouldn't do that part of the dance, so I sat down. I had someone come up to me and ask me if I wasn't motivated. >.< It was very insulting. I'm suppose to go to dance practice tonight at 9pm but I really don't think I'm going to make it, and I am just going to rest all weekend.

Thanks for the kind words Cat! I've just basically burned out here. It sucks!
10-07-2011, 05:01 PM   #4
Cat-a-Tonic
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I know it sucks. I've been there, I've been horribly depressed over this illness, I got burned out and was so sick of being sick all the time, of having people ask how I am and only being able to say "the same" or having people ask if I've been diagnosed yet and having to tell them no. It's frustrating, depressing, spirit-crushing, life-altering, just a horrible experience. All I can tell you is my own experience, which is that it CAN get better, even when you're at your darkest time. Do whatever you can to distract or cheer yourself up during this time - watch favorite movies, call your hubby, take bubble baths, cuddle your dog, crochet, play video games - whatever you can do to distract from the pain and make the time go by quicker. That rheumy appointment is coming up quick, just a couple more days to go. Just take it one day, one hour, one minute at a time until then. Hang in there, and if you need to chat I'll be around. I'm not on the forum so much on the weekends, but I'll make sure to check the forum when I can, and I am on Facebook fairly regularly too. Hang in there, and big (((HUGS!!!)))
10-07-2011, 05:11 PM   #5
allieinwonder
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Thank you so much Cat. You are so right. It will get better. I'm trying not to get my hopes up over this Rheumy appt, but I do hope that he can at least help me a little bit with this first appointment. I'm just going to rest until then!

I hope you have a WONDERFUL weekend! I'm so glad you are feeling so great lately, it shows us all that it is possible even without a diagnosis.
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