Two diseases, no cures. My story so far.

I felt like writing tonight. This is part of my story. Sorry if it doesn't make sense I wrote it with my phones note pad


As I reach my 23rd birthday. I can't help but wonder what I've done with my life. Sure I graduated high school with over a 4.0. I attended one year of a private woman's college. I've met my wonderful and amazing boyfriend of 4 years. I have a good car, good job, amazing house. A 6 year old step son. But I still feel like I haven't accomplish much. That is. In the last ten years I had hope to learn to get over my trich. I had always told myself it was just my way of relieving stress and I could stop any time. But the truth was, I was addicted. I have never told anyone about it. Only my boyfriend and he still doesn't understand. As a teenager. It freaked my mom out and I was at the doctors at least once a month trying ti figure out why I was "losing my hair". I could never tell them the truth. I was embarrassed. I didn't want anyone to think I was a nutcase. But the tested never showed up what could be causing this hair lose and it always remained a mystery.Cookie
I have been pulling my hair, picking my skin for almost a decade. It amazes me. I can't believe I do this to myself. it's not that I want to. I just have to. I get into a trance and can't stop myself. It's worse when I'm stressed out.Cookie
As I grew more curious about trich I began to do research. Trichotillomania has no cure. Wait. You mean I'm stuck with this? For the rest of my life? How am I supposed to do this? I can't control myself and I'm going to look hideous for forever.
Speaking of no cure. Since I've moved away from home (5 years ago) I have been hospitalized twice. 2009 and 2011. ( I almost had my appendix rupture in 2005... I'll get back to that) 2009. Without realizing it I was constipated for a month. Meaning in a month, I don't recall pooping. When miralax didn't work and actually made me throw up I began to worry. And sure enough I got horrible pain in my lower right abdomen. It was worse than when I had my appendix out. I went to the ER in serious pain and they didn't know what to do. They said exploratory surgery and I freaked out ( had to up my pain meds to calm me down) then they decided to admit me. When then they monitored me pumped me full of antibiotics and pain relievers and what not. That's when this thing called "Crohn's Disease" was first mentioned. I brushed it off as soon as I was well. I didn't have health insurance. So follow up visits were out of the question. After that visit, I was better and thought nothing of it. I didn't have Crohn's, I wasn't sick. Who would have known in less than two years I'd be in the same position. 2011. It was a different pain. My back pain was horrible. Just in one spot. And this burning sensation underneath my ribs. I thought it was my gallbladder ( thank you webmd). I had my boyfriend drive me out to the ER( a different one. This time I had health insurance). What started out as a burning sensation/ extreme pain under my ribcage turned into the normal lower right. They did a CAT scan. And told me they thought I had another appendix ( magically I grew another one?) but the area was so inflamed they wanted to admit me and monitor me. So they did. This time I had more help and this Crohn's disease was looking like the suspect. After five days in there, I was released. But this time I followed up with a GI doctor. He was pretty awesome. Told me I have a 99% chance of having Crohn's. Said I was one of his least whinny patients( little does he know now!!!). We did a colonoscopy he said it was too inflammed to see small intestine but looks like Crohn's (BTW I woke up in the middle of it. Still have nightmares) . I also had a small bowel series done with I was never told the results of it. Since then I have lost my health insurance. I am taking no medications except for a multivitamin, vitamin d and b12.
I still have a lot of questions. Was my appendicitis really a flare up? I was actually supposed to have a colonoscopy done a week after that happened ( they found blood in my stool) but that never happened. I was hospitalized for 4 days after having my appendix out which wasn't normal.
What do I do? I have no direction. I'm in constant pain. If its not my guts, my joints are acting up. Or both.
I have no insurance no guidance. And no one seems to understand. My "best friend" was really supportive in the beginning. And now she doesn't want ti talk about my pain (but her pain is ok). I'm a baby, I complain all the time. She thinks she has the same issues as me. My boyfriend has read up on the disease, supports me, understands. I'm not feeling well, he helps me out.
So. As I reach my 23rd birthday. Here it is. I am who I am. I wouldn't change a thing. I am 23 and I have two diseases with no cures.

Thanks for reading,
Ashley

Hi Ashley and welcome to the forum! I'm really glad you joined With pleasantries out of the way, it's time to get serious. Because if you don't get serious, you're going to end up in a heap of trouble. It is absolutely imperative that you get this disease under control and very fast. And based upon what you're saying, it is already reasonably advanced. So:

1. You need to get some sort of medical attention/evaluation. Find a free clinic, get state or federal assistance, whatever. This is really important Ashley.

2. I'd strongly suggest going on total enteral nutrition in the meantime. Studies have shown that it can induce remission as well as steroids which is amazing. However, it will be very hard for you to stick to. But if you're not getting conventional treatment, it is imperative that you not so much as have an additional cracker, go on the total enteral nutrition and stick to it.

PLEASE do this. I'm really concerned about you. I've literally read thousands of personal accounts of Crohn's Disease and countless studies and everything else I can get my hands on. I know what comes next for you if you don't get this under control. The clock is ticking. Get serious. We're happy to help in any way we can.

*hugs*

Ashley,

I got my diagnosis of Crohn's like a late 23rd birthday present. It was awful and things spiraled into a really dark place for me for a while. There may be no cures for what we're dealing with but that doesn't mean there's no hope! Things will get better, but it may take a while. What really helped me was starting to do research into Crohn's, treatments and other peoples' experiences. It made me feel like I was finally in control again.

I'm so glad that you found your way to this forum. There are some incredible folks here and some great information. If you need help or support this is the place to ask for it! Welcome.

Thank you both for your input.
David, I have thought about doing a liquid diet, but I think it would be hard for me? I do physical labor for a living and I've noticed when I used to just drink ensure, my energy levels were always low. I tried apply for the Oregon health plan when I first moved up here (4 years ago) but had no luck. I was lucky both times I was admitted into hospitals that I received 100% charity to cover the expenses. Since there are only a few hospitals in the area, my plan was to wait until I'm double over in pain before going to another one. There is OHSU here which is a school and have lower rates than say a normal hospital. I'm just afraid if going in. It seems like whenever I go in for help I get admitted for a week! And I cannot afford to miss that much work. I know it serious and I need to get better control of it. I just don't know how sometimes.

With all due respect Ashley, your plan is a terrible one I say that lovingly and with compassion.

Yes, the liquid diet would be hard and you might need to drink more than most due to your work, but I promise you that you're going to be missing MUCH more work when they remove a foot of your intestines (there are worse scenarios).

Please have a peak at our enteral nutrition forum.

Ya I'm well aware my plan is stupid and will not work out in my favor. I'm hoping to get this job that will offer full benefits but even then I would have to wait for three months to get it. I'm going on a vacation this weekend, just to our wonder Oregon coast and after that I plan on contacting someone for help.