Highway to Hell

To be honest I don’t even know how I am writing this because I am so weak and sick. Ive been sick now for a while unfortunately beyond the help of drugs,alternative medicines and diet I have even tried silver water. Nothing works! I don’t know how I came to this when I was going so well.It’s like taking 1 step forward and 20 steps back. I’m sick, disorientated, possibly anaemic at this point seeing as im losing twice the amount of blood and I havnt eaten in the last few days because it is just not worth the pain and misery.

I just started back to work two weeks ago after proving how much better I was and then this happens so now Im back to square one with no job again while I sob my heart out on the toilet and cry out in pain trying not to vomit. I cannot see my GI doctor until the 19th but I dont think I can last that long. I tried bringing the appointment further but there are too many people waiting. I just have this horrible feeling by next week Il be back in hospital on god knows what bawling my eyes out because Im completely lost as to what to do. Did I mention it’s my birthday the 30th of May? so AGAIN i will probably be in hospital celebrating my 25th with a feeding tube and iv steroids.

It’s finally getting to me just how much it has affected my life over the past four years and what it has prevented me from doing and preventing me from doing. I cant even joke about it at all its just not funny! So far since I have wrote this I have gone five times and since Im surviving on just water its pure brown liquid with ALOT of blood and mucus. Wow! appealing! And just before I wrote it i had a dreaded accident where i just didnt make it on time. It’s just humiliating! Sorry about the rant but this is the only place I can rant that people know exactly what I’m going through. I rant all day to my friends and family but they dont understand the pain and misery along with it. :( What do I do? Help me! :'(




accident, anaemic, blood, misery, mucus, pain

13 Responses to Highway to Hell

  1. Adam
    Adam May 7, 2010 at 5:54 pm #

    Hi Jen,
    Definitely we are all pulling for you out here in the Bay Area of California. There’s absolutely nobody who deserves to be dealt all the nasty crap that colitis can dish out, especially not you. After having gone to hell and back a few times, it is starting to make me feel guilty for not being hunched over in pain with blood dripping out my tailpipe. Thanks for sharing your current thoughts, rants whatever you want to call it. To me, its quite simply the reality of the ulcerative colitis disease. No easy way to sugar coat it. Colitis can literally make anyone go crazy.
    We have been and will continue to hope for a quick return to a state of normalness, which you so much deserve. Feel free to email/skype whenever you want.
    One final thing
    “Hey colitis man, get the hell out of Ireland! NOW!”
    Adam

  2. jared May 8, 2010 at 7:36 pm #

    Jen-
    Don’t give up! as we all know this condition is the pits. your family and friends probably will never understand what you’re going thru (and that’s ok). Just know that you’re not alone out here and that you can beat it. Our bodies will heal themselves, it sometimes takes a little bit longer to figure out how to do it. I’m still trying to figure it out for myself! But we got to believe–in ourselves and each other. i know what it feels like for your body to be a fast food joint: easy in, quick out.

    As far as alternative treatments go, what have you pursued? on my list are colon hydrotherapy, enemas, and acupuncture. i’ve also read that probiotics may help (although some are dairy). my feeling is that everyone’s body is different, but that with the right diet, a positive mental attitude and some experimentation that we all can get over the hump.

    Be Strong and Good Luck!

    Midwest J

  3. Kieran May 9, 2010 at 12:59 pm #

    Hi Jen just after reading your message and my heart goes out to you, but you, I, and everyone with UC cannot let it beat us, we can and we will survive this…..

    Kieran

  4. Paul Willoughby May 10, 2010 at 5:21 am #

    Hang in there, Jen. I am hoping you get some relief. Good luck.

    Paul

  5. Brad May 11, 2010 at 1:48 pm #

    Sorry Jen, My 24th bday is on the 30th of May. Im not in the condition your in at the moment, but my bday wont be much better, at home within a close range of the bathroom. Ive tried almost everything even looked at the silver water myself didnt try it tho. Your not alone on the not making it to the bathroom humiliation feeling, other than to the Dr’s office over the past year ive been bowling once and to the movies once, nowhere else I’ve moved back in with my mom and prettymuch shut myself off from the world, I just sit here and waste away hoping one day I’ll wake up and things will be different. Online classes for a degree in business are the only thing that keep me from going completly insane. Sorry your in such a terrible rut right now and hope it ends soon. Dont feel alone. I know the comprimises made to suffer through this disease are overwhelming at times, just stay positive thats all we really have. Hope this message finds you in a better condition.

    Brad

  6. Jen May 14, 2010 at 4:13 pm #

    Hey guys thank you so much for the support! really appreciate it! I dont feel so alone during this hoorrible time

  7. Angelica Spurigo May 14, 2010 at 7:22 pm #

    I hope my message isn’t too late,
    Similar thing happened to me a few days after I turned 21 in march, I couldn’t see anyone for awhile. I thought I was going to have to drop the semester, but then I randomly had cranberry juice at a friends house and it made a big difference. It kept me hydrated and I kept it my refrigerater since. For me drinking water during a flare doesn’t help me and can be very painful. Every morning and night I have activia yogurt that has living cultures and helps me get outta bed in the mornin and before I go to bed I keep cranberry juice with some water in it next to me and for the burning through the night I take a pepperment gel supplement called peppermint plus, before I go to bed and a heating pad on my stomach. It really helped me alot and I hope it helps you. I’m sorry that happened to you no one deserves this ;(

  8. Carol May 15, 2010 at 9:47 am #

    Hi Jen, so sorry to hear this news.
    Have you been sticking to the SCD diet and taking probiotic supplements?, That’s really helped my bowel problems a lot, but I have to be REALLY strict for it to work, but it’s worth it, try and really go for it and rest , cos the first 10 days of the diet can make you feel quite ill.
    The probiotics I take with no yeast ir starch in are “Nature’s Biotics” from http://www.kiki-health.com
    My thoughts are with you :-)

  9. Pat May 20, 2010 at 3:36 pm #

    I was diagnosed in 1991 and did the meds, hospital stays, insensitive doctors and down time where the mind is active but the body feels like HELL!!
    I went on a mission to find other ways to deal with this extremely painful, embarrassing and costly disease. I tried many things, but in the end I have found alternative ways to deal with this disease.
    I have not had a flair in over 8 years. Alternative maynot always be the least expensive, but in the long run it does cost less when you consider the cost of a hospital stay, the high cost of meds and the real pain of being this sick.
    I had a colonoscopy today…my 14th since being diagnose. The last one was 5 years ago. Today I got a great report. They showed me the pics and the doctor didn’t even mention when I have to come back again. I mentioned what I was doing and she knew. My primary doctor is an alternative medical doctor. The doctor that did the colonoscopy to me to tell him the medical community is coming around. These two doctors know each othe.
    Anyway there are other ways to deal with this debilitaing disease. I hope you too can find the way.
    Pat

    • mark July 26, 2010 at 10:29 pm #

      Pat,

      I want the name of your alternative medicine doctor please? I feel so so bad for some of the/experiences I’m reading here. As I sit here and sob about my situation looking for answers with UC its not near as bad as some of these other experiences I’m reading and I pray for all of you going through this. The most humiliating thing for me lately is being at work and having to go 4 to 8 times a day I finaly had to tell my boss what was going on. Stay strong and keep positive everyone

      Mark

  10. Sharalee May 23, 2010 at 4:21 am #

    Dear Jen

    Unfortuanately when we get flare ups that seems to add to our stress and make us sicker. Its hard to get control again. I myself have been wearing depends because I never make it to the bathroom anymore. Its usually alot of puss and blood. It does change our lives. I dream up my ideal house somedays and somehow it would have a toilet in every room because that is where we spend our time. I myself find that a warm bath helps my crampng quite a bit so when I can I just lay in a bath to feel better that and it feels good on the old pooper too. I usually have hemroids or something happening down there that stings and burns. I know what you mean that friends and family don’t understand and unfortunately the only way that would is if they had it too. We don’t wish that on anyone. I often say my next relationship will be with someone who has UC because I think its the only way it would work. I would need two bathrooms though. Good luck and I hope you feel better soon. I myself end on prednisone its the only thing that works.I want to take Remicade but I can’t afford it.

  11. Jen June 4, 2010 at 2:07 pm #

    I’m so sorry that you are going through this. I feel your pain. I am having the exact same problem. Always so much blood. It’s always so scary. I’m not throwing up as much as I have in the past during other flares though (but I did last night). I remember about 10 or 11 years ago where I sat on the toilet and threw up in a bucket in front of me for what was a least 2 or 3 months. I lost so much weight and my heart would just race going from the couch to the bathroom. But you know what, I got better. I had a few flares in between and was symptom free for almost 3 years before this flare. And if I had paid attention to the little changes in how I felt I probably wouldn’t have gotten this flare as bad as it is now. YOU WILL GET BETTER. It takes time, but you will. Don’t give up and feel helpless. Rest, keep hydrated, keep a journal of all the foods you will eat when you feel better, watch cooking shows. And as much as you might just feel like laying there crying. Put a funny movie on, eat a healthy popcycle and laugh. Can’t wait to hear when your better again.:) jen in america

  12. Ralph W December 29, 2011 at 7:54 pm #

    Jen I pray you are on your road to healing. I suffered 3 yrs with heavy bleeding, anemia, and crazy meds. Have had UC for 4 yrs and this past year has been the better of these 4 yrs of hell. Look into taking a probiotic with food. I have also been taking 2 teaspoons of aloe vera in a glass of water. Aloe has natural healing properties for the digestive system. It has helped me. Some other things I did was cut out anything with high fructose syrup, milk/dairy, processed prepackage foods, any kind of fast food, sodas, all the junk food out there… It makes a difference. Also try to get plenty of rest, force yourself to get out and walk, excercise in some way,, get sunshine, you’ll be surprised how the body responds when you push it. Focus on deep breathing, pray, meditate on what a healthy future looks like to you… Keep your mind positive. I say thus because all these things and more I contribute to this being in remission in, my body. Not to knock drugs or doctors, but they really have no clue how it feels. And most of the drugs I took were causing havok on me, like acne and my hair was falling out. I think they made me worse. I still take them, but have cut back to just 1 pill instead of 12 a day… It was gradual. The better I got the more I weaned off it. We don’t want this disease to take control of our lives and force our body to become dependent on pills. Look into natural healing. God put and made everything on this earth and he said it was good, and when you think about it you are just flesh and blood that has the same chemical makeup found in the earth. So there must be things here that are natural and can help to heal.

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