Wednesday, October 27, 2010

Where do I go from here?

Where to begin?

The past couple of weeks have been eventful to say the least. I went to the dermatologist and told her I had lost a third of my hair, she immediately starts pulling chunks of hair out from various places. Hello?? I need that!! Luckily she did agree with me that I had a hair loss issue going on. The following Saturday, I gave in and got my hair cut. I had worked so long on growing my hair out and I just had it chopped off into layers. The negative side is I doubt I will ever get it to grow to that length again, the positive however is that my hair looks much thicker.

I started prepping on Monday, October 11th for the Sitz Marker test. The test involves swallowing a capsule that contains twenty-four to twenty-six rings that run your GI tract. During this time you are not to take any laxatives, I can’t function without them. I had to go a total of eleven days without any laxatives (a.k.a. no magnesium citrate). To recap, five days of prep and on the fifth day take the capsule. You then have to let this wonderful capsule run your GI tract for five days. On the fifth day, you go to the hospital for a series of x-rays to see if all of the rings have cleared your tract. A “normal person” will have zero to five rings left in their tract.

I had to endure another test call an anorectal manometry. Out of all the tests that I have been through, this was the worst. It wasn’t painful, it was just unpleasant and I couldn’t do parts do parts of it. When I was diagnosed with Gastroparesis, my dignity went out the window.

The last two days before the test were the worst. I stayed home from work and just stayed on the couch. I looked pregnant and it got to a point that almost every time I moved I hurt internally from being so full of food. I was telling Jacob and mom “Never again will I have this test!” Let’s be real here, I’ll probably have that test again in the next two years with how things go with me.

Thankfully Friday came and I stayed home from work to clean out, I was miserable. I had this feeling that two weeks of food and a bottle of magnesium citrate would make me feel horrible and probably take a while to work. It was Friday afternoon and I had been asleep in the recliner and I woke up in really bad pain. I thought to myself that it was just a cramp, it would go away but it never did. The pain kept intensifying so I had my brother call my mom. By the time she got home, I was regretting everything, who needs test results anyway?! I called and left a message for my doctor and then I got this “feeling”. I got up out of the recliner and slowly poked my way to the bathroom when I started getting hot and everything started going black. I made it to the bathroom and I was going down for the count. I could hardly hold myself up as I yelled for help. My mom, who is great in any situation walks in and takes over. Again, my dignity out the window as I’m sick passing out in the bathroom and there’s my mom “Oh, it’s okay.” You got to love your mom.

For the rest of the day that was pretty much the routine. Cramping, nausea, get out of the recliner-feel like you’re going to pass out. My doctor’s office did call back and tell me to come to the emergency room because I had some issues going on from the x-rays on Thursday and they would ease the pain but I was too sick to make it to the emergency room.

As for my test results, I received those today. The Sitz Marker test showed that I had twenty-six rings in my GI tract which my doctor said was not good. He said the anorectal manometry showed that my muscles were weak and I would need to do some physical therapy to maintain or possibly improve their capabilities. To make life a little more “interesting”, I now have Gastroparesis in my intestines and my colon. I have three organs that have paralysis. My doctor said that it was not a good situation. He said there was a possibility that I have an underlying auto immune disease/condition that is yet to be diagnosed but I am not ready to deal with that. He wants to do a breathing test to see what kinds of bacteria are lurking in my intestines and colon since the food tends to stay there for long periods of time.

So after the past few weeks, especially today, it would be so nice to be child again – no major health issues.

15 comments:

  1. you poor thing!!!! i feel so bad for you :( gastroparesis on its own is bad enough! i also have a bit of the intestinal problems you talk about, but oh i can only imagine! i know how annoying advice can be, but things you may want to look into (they work for me):
    (1) this biomedical researcher gives lots of recommendations for minimizing inflammation (which would happen if you have an autoimmune disease or if your stomach/intestines are irritated).
    http://coolinginflammation.blogspot.com/search/label/anti-inflammatory%20diet
    (2) try some yoga or other exercises to strengthen your muscles from the outside in
    (i have some on my blog: primalbattlegastroparesis.blogspot.com)
    (3) take more probiotics and limit fiber
    (4) hypnotherapy / self-acupressure (also on my blog)
    I really hope you get to feeling better soon!!

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  2. Hi Claire,

    I hope you are gastroparesis is treating you well today. I will check out your blog, I am always open for suggestions.

    Jennifer

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  3. Jennifer, I haven't dropped in to read your blog in a while, but I thought you had probably gone to Philly by now so I thought I would see what they had to say, so I was surprised to see what was going on with you. I sure can relate. I have had hair almost to my waist all my life and this summer had it cut it because of it falling out so badly. It now is above my shoulders, I just don't know if I'll get use to it this way.
    When I had my sitz marker test done I had 25 out of the 26 markers left. I am going on the first week in Dec. to have a anorectal manometry done. I'm really nervous about it. I didn't know anyone that had had it done. So, not painful? I googled it (of course) it sounds terrible. And they can retrain those muscles? Really? They didn't tell me anything about eating food, I only do liquids. I will die if I have to put food into my stomach and then try to pass it. I only have 3% motility in my stomach and 0 in my lower digestion. I have Chronic Intestinal Pseudo-Obstruction. I too, do "clean out" on Fridays, every Friday.
    You are so lucky to have family to help you. I am home alone on Friday when I do my clean out, my hubby is at work, kids are grown (I'm 52yrs) and my family lives in Ia.and I in Va. My youngest son is a Pre-Med student so is here a couple weeks during the summer and at Christmas. When I'm almost crawling to the bathroom I sure wish I had someone here.
    It was time for my bloodwork this last week and my vitamin D came back at a all time low, normal is between 30-80. And at 21 they conside it dangerously low. My was a 16! So I am on a liquid vitamin D, along with everything else.And am getting another bone density scan done,it showed my bones deteriating last time. So they are afraid of what is happening now. I wasn't surprised because my bones and joints hurt all the time now. Do you have that problem, your bones hurting?

    Happy Tummy Days to you,
    Jeannie

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  13. Jennifer,
    I know your wondering about all the removed post. When I posted, it came up 10 times! So I removed them. Don't know how that happened, but didn't want them on here.
    Sorry...

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  14. Hi Jeannie,

    No worries. I got sooo frustrated the last week with my hair because there wasn't enough of it to do anything with that I was late for work. It sounds stupid but after dealing with it day in and day out, it gets old. It thought about just cutting it off into some type of bob hair style. I don't think you ever get use to it because every time you wash or brush your hair you're reminded, "There goes much needed hair that won't be coming back."
    As for the anorectal, I'll be praying for you girl. It was mostly uncomfortable. For me, I had all of that pressure, cramping and nausea to deal with. If you've read about the balloon, I had to push it out (deflated) to test my muscles and to see how strong they were. I couldn't do it. I worked for five minutes and they had to take it out themselves. Overall, the experience would of been better if I could have relaxed but I can't. My urologist is constantly telling me "You have to relax." If you want to talk to me about it, send me an email and we exchange numbers (mylifewithgp@gmail.com). I wish you the best.

    Jennifer

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  15. Jennifer, I'm having one of "those" days. So am having a hard time going to bed. So thought I would check to see if you had been on here and see if you answered me. I will be sending you an email, thank-you!
    You are soooo right about the hair. As I brush through my hair I can feel it falling on my shoulders and back. If I run my fingers through my hair I have hair between my fingers, not just one or two, several. When I look into the mirror I wonder who that person is. With the short hair and now I am having trouble wearing my contact lenses. I have worn contact lenses since I was a young teenager. But now they bother my eyes and we have tried several different kinds and I just can't seem to wear them. OMG!!!

    I read what you wrote about your Father. It broke my heart.I do relate. My Father has Lymphomia Cancer. He is now 84yrs.old. The only other time he has ever been in the hosiptal was 10 yrs.ago he had a 4 way by pass. Other wise he has never been sick.....ever. But he has done so well with is. When this started, like over night, they put him in the hosiptal and he did chemo for a week straight. His dr. told us he did better than alot of 30 yr.olds. That was 2 years ago. He is doing great, of course he still has it, but doing great.

    I'll be in touch with you soon. Thank you,
    Jeannie

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