Monthly Archives: June 2013

Specialist Appointment = Epic Fail

Well, I’m not going back there!  The Gastroenterologist I saw had her assistant ask me some questions for about 10 min., then she saw me for about 3 min. total. She did not give me time to tell her any of my symptoms, such as the fact that (WARNING: TOO MUCH INFORMATION TO FOLLOW…) when the spasms are super-bad I’ve actually passed intestinal tissue after stool, and tons of blood, and being a girl, and having had C.Diff., I know internal tissue when I see it. She wouldn’t look at the picture I brought of my abdomen at it’s most distended. She didn’t read my file. And after spending exactly 13 min. on me, she looked at me condescendingly and said, “I think you just have a little IBS. That can happen after an infection.” When I asked her how simple IBS could be so painful and debilitating, she proceeded to tell me that while everyone deals with “discomfort” differently, I could be dealing with it better. She then attributed the extreme pain, etc., to “negative thinking” and said that (and I quote)  if I just told myself everyday “I’m going to be okay. I’m fine” then soon, I will be.

Yup. She thinks my symptoms are all in my head. Why? Because she noticed on the basic form I filled out in her waiting room that I take antidepressants. “You have a history of psych problems, right?” she asked. “No,” I replied, “I just have depression from feeling so sick all the time, watching my sister struggle through the aftermath of a traumatic brain injury, and losing the ability to live my life to the fullest due to the aftereffects of the C.Diff. infection.” She gave me a blank stare, and then proceeded to feed me that “positive thinking” line. She then said to try probiotics for three months (even though I explained I’ve been taking them for years now) and to come back if my problems still “exist” in three months. Then, she might consider ordering some imaging tests. But then there’ll be a waitlist for that, so all told, I won’t get any help until at least six months from now.

I was speechless. After she left, as a sort of consolation prize, her assistant ordered some blood work and stool samples. I’d told him in the few min. I was able to speak with him, that I’d moved thousands of miles across the country to be able to get this specialist appointment.

I’m usually a very level, easy-going person. I very, very rarely get mad. But I have to admit, I really wanted to break something. Like maybe her face. I sobbed all the way home. And now I’m back to square one. I’m really hoping my dr. will consent to referring me to another, different specialist.

So all told, the appointment was an epic fail. The dr.’s waiting room was over-crowded and far behind schedule (even though my appointment was at 8:45 in the morning) and I think she just didn’t want to take me on. I think she’s overworked and doesn’t want a hard-to-figure-out-case like myself.

My response to all this (besides the sobbing and despair, and all that jazz) was to get my most favourite comfort food – one that I’ve denied myself for three years because of how nasty it’d make my digestive system feel. I said “screw it,” took two gravol and a buscopan, and ordered a Taco Salad. It was heavenly. And yes, it was worth the 6 hours of agony I endured about two hours later. It was worth every second.

So what did all this teach me? 1: Dr.’s can be discriminatory if you have even a slight history of hum-drum mental health problems like depression. Dr.’s can also discriminate if you are not the weight they think you should be (I was told people who have intestinal problems “are always very thin”, and I’m curvy and “look healthy”, so I must be fine) 2: Dr.’s can take the easy way out by saying “it’s all in your head” and knowingly screw you over, and can carry on with their day just fine, thank you very much. 3: I have to shake it off and carry on and keep pushing. I have to demand help, and I have to keep demanding it until someone gets tired of hearing my voice and gives me the help I cannot provide for myself. And 4: when life gives you lemons, order a Baja Taco Salad to go with them.

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C.Diff. Survivors Forum

Hi Everyone,

We now have a forum! This makes chatting easier, organizing our information easier, and you can also pm (private message) other members. Our forum address is:

 

http://cdiffsurvivors.lefora.com/

 

We’re open for business! Hopefully many C.Diff. survivors will find us and we can all support each other. I’ve created several categories on our forum to help organize our information.

If you feel comfortable with it, I’d appreciate it if anyone who has posted their C.Diff. story here on my blog, would copy the text from here and paste it into a new post under the “Our C.Diff. Stories” category on the forum. If you’ve posted helpful links, there is a category for those too! Moving all of the information we’ve collected together from this blog site to the forum would take a long time if I tried to do it all myself, so a little help would be much appreciated, if you’re able. Thanks everyone!

Lady P

 

Anyone Want A Forum?

Hi Everyone,

Since so many people are finding their way to this blog and are finding help (or at least support and reassurance) from others here, I’m considering putting together a forum site for C.Diff. survivors. This would make posting and chatting more organized, and finding and sharing information much easier, and it may help in coordinating our efforts to promote awareness and change. If people are interested, I’ll go ahead and put the site together, so let me know by replying to this post with a “yes” and with any suggestions you might have for the site, such as sections you’d like to see.

Thanks everyone – you’re a really special bunch, you know that? You may not feel it, but you’re all so strong 🙂

Luv Lady P

I Thought I Was Going To Die

Well, I didn’t die. But for a while, I was kinda wishing I would.

I spent the other morning (woke at about 5 am) crouched over an ottoman in my living room, unable to do anything but rock, and whimper, and cry. I broke some of my nails because I was clutching the fabric of the ottoman so hard. The abdominal pain and nausea were unbelievable. It felt like my body was trying to reject my stomach and my spine at the same time – one out the front of my body and the other out the back. That was probably due to the abdominal swelling. Unproductive vomiting and writhing ensued. Eventually, I was able to keep down two Gravol pills, one 8mg Zofran (an anti-emetic), a 10mg Buscopan pill, and 1mg of Clonazepam (because the gravol has the side-effect of making my Generalized Anxiety Disorder intensify, as all antihistamines do).

After about an hour the pain was a little diminished, and I was no longer heaving. Taking this as a good sign, I used an old standby trick to try to reduce the pain further: I ate ice. Yup – just regular old ice cubes. I crunch them up and swallow them down. The cold seems to help with whatever inflammation is going on in there.

The reason I’m posting this is to show how weird life can be for C.Diff. survivors. I don’t know what happened, but I think I might have had some kind of a stomach virus that made my insides sit up and scream. Maybe it was just the “post-infection IBS” having a party in my abdomen. I have no idea. My doctor has no idea. And there’s no way to really know. That seems to be the refrain for us survivors.

But, on the 13th, I’m going to see someone who might know, or who might at least have a way to find out. I’m going to make it a point to ask about pain relief options, because I’m currently experiencing a real energy low due to exhaustion from constant, never-ceasing pain. I’m really reluctant to take anything that could slow my digestion down (which is why I take even my Buscopan really sparingly). So that pretty much rules out the whole codeine/narcotics family of pain relievers. And anti-inflammatory drugs always seem to be hard on the stomach, but maybe there’s something else. If there is, I’ll post it here, because I know a lot of us are experiencing debilitating pain.

For now, I’m going to go eat more ice cubes.