I Hate My Guts But I Keep On Keeping On

Me on the left, my wife on the right...

Me on the left, my wife on the right…

Meet Ashley:

My name is Ashley. I am 35 years old and I live in Memphis,Tn. I am somewhat still a newlywed. My wife and I were married April 13, 2012 in Decorah, Iowa. I have joined this sight looking for support and advice on coping with what I may or may not have. Any advice you guys can offer would surely help and hopefully help with the stressing, worry and lack of understanding that I have with what is going on with my body….

Some more about me:

I am not the most interesting person in the world. I have a small obsession with Spiderman and Wonder Woman. Lol… I keep to myself alot and have a very small group of friends that I have had for years. I try to be caring and understanding and sometimes that can be used as weakness against me instead of a strength. I have ADHD so naturally, I am a little spastic and random but I keep it under control with my good old Adderall. I love tattoos and everything about them. I live in the city but I am from the country and from time to time, my countryness comes out! I enjoy spending time with my wife and best friend but for the most part, I am a homebody. I guess that may or may not be enough to describe me for the most part. There really isn’t alot to tell…

Current Symptoms I’m Feeling:

I am not certain yet if I have UC but according to alot of people, I have every symptom if it. Nausea, bloody diarrhea, or extreme constipation with a swollen 8 month pregnant looking stomach, dizziness, weak, my body aches but mostly my bones and joints. I am either in the bathroom all day or feel like I can’t go at all. IT SUCKS! But mostly it sucks not having a definate diagnosis. This all started in 2008 after having my gallbladder removed and has since escalated. Before my colonoscopy in October of last year, I was told I had ulcers, then pancreatitis, then right sided colitis. After my colonoscopy, I was told diverticulitis but after being discharged after a week in the hospital on I.V. meds including [but not limited to the Adderall and Celexa I have been on for years] Levaquin, Cipro, Zofran, Flagyl, Dilaudid, Prevacid, Tramadol and LOTS of fluids. I went back to the ER multiple times and evrytime, they gave me Loratabs, phenergan , cipro and flagyl. I ahd been onmost of these meds for a week at home prior to being hospitalized. Then for a week in the hospital prior to my colonoscopy. So if I had a flare, I am afraid that it went undetected because all the medicine could have got it under control.

I Hate My Guts

I have lost my job due to the doctors telling me that I didn’t need to work which was hard for me to hear at my age. I applied for disability/ssi but my case is still pending. Needless to say I have no insurance and all my medicines have put a financial strain on us. I contacted the manufacturers about helping feel my medicine but I never get a response. My white cell count is usually off and I am anemic but they say my xrays and CT’s come back good. My family helps me as much as possible but they are not rich so sometimes its not always easy financially.

I am worried that I am going to go undiagnosed forever!

It is so frustrating! I am waiting for my GI referral from my primary care doctor. I was given a definitive diagnosis for UC from my psychiatrist/Nurse practitioner and PC doctor. They put me on asacol but I am out of it now. I did ok the first half of the day while taking it but around the 2nd half, I fellt horrible, in pain a nd weak. Now that I am out of it, I feel even worse., Luckily I had flagyl and cipro on hand so I started those today. Does things get better? I don’t feel like my doctors understand. My patience is wearing thin and I just need help coping with all the changes to my body and life. I hate all the same test being done over and over and they keep scratching their heads and acting like they have no idea what’s wrong with me! I am patient for the most part but I am getting a slight bit irritated and feeling like I have no control over my life. Any positive input will be greatly appreciated…

Current Medications:

One a day vitamin
Ensure because food sometimes kills me!
Adderall 10 mg twice a day
Asacol 400 mg once a day (ordered from Canada so its the generic)
Flagyl 500 mg 3x a day
Cipro 500 mg Twice a day
Celexa 40mg Once a day
Fleaxril (as needed)
Loratab 5mg Every 4-6 hours
Phenergan 25mg Every 4-6 hours

I am honestly not sure if mymeds help. Sometimes I think so and then their are times that I feel worse and it is almost impossible to function throughout the day…
I hope someone can help guide me in the right direction because I am still trying to accept everything but most days I am miserable.
Thank you for listening to my story…

written by Ashley

submitted in the colitis venting area





8 Responses to “I Hate My Guts But I Keep On Keeping On”

  1. Richele
    RicheleFebruary 4, 2013 at 6:39 am #

    Hi Ashley!
    How frustrating for you and your wife! I’m so sorry you haven’t gotten any answers yet, seems like a long time to wait. Have you tried diet changes and or probiotics? If you’ve been pumped full of antibiotics over and over it probably killed off all of the beneficial bacteria in your poor, inflamed guts :( Probiotics are relatively inexpensive and you can order them online or find them at health food stores. I know a lot of people swear by living gluten free. I read a book called “Wheat Belly” and it goes into great detail about the ill effects of wheat on our bodies. Do you qualify for medicaid?
    I too cannot work, I’ve been “unemployed” for about seven years, but I am a stay at home mom so I still have a lot on my plate. Sometimes it feels like there is no end in sight and the days can be pretty bleak, but when it all gets to be too much I try to step back and just think…this is what’s happening right now. I give myself a break and try to be very gentle with myself. Treat your body and mind like you would treat your wife or a family member if they were sick. You most likely wouldn’t be hard on them as you are with yourself.
    Hang in there and I hope hope hope you find answers and relief soooon!!
    Be well,
    Richele

  2. bevFebruary 4, 2013 at 2:37 pm #

    Start taking a good 50+ billion strain probiotic right wawy…every morning first thing, on an empty stomach, and then don’t eat for an hour. Give this some time to work, like a week, and you just might find that you feel alot better and also that alot of your symtoms disappear!

    Trust me! I never believed in probiotics or anything natural, but after 15 years on UC meds that never really worked, this did work for me…and it’s NATURAL!

    I am a believer now!!

    Cheers
    :)

  3. shelly in maineFebruary 4, 2013 at 4:16 pm #

    Wow, that’s alot of meds for a sketchy diagnosis. Some of those meds may be contributing to your issues. Did they check for cdiff?? You need a gastro doc!
    The flagyl just about did me in not to mention antibiotics deplete ALL your gut flora-good and bad, hence, the probiotics! The ensure may not be so helpful either. Look at diets like SCD and gaps to help calm your system. Soups and Smoothies are easier on your system-just be careful what you put in them…stay simple and mellow. Even milk, cheese and eggs can be bothersome. Keep track of all you eat and bm’s, etc…a journal is extremely helpful.
    Keep reading and researching…knowledge is power. Do yourself a favor and look up all the side effects of the meds you are taking…you will be greatly surprised to find many of them cause the symptoms they are trying to fix!
    Congrats are your marriage…Maine just passed!
    Now take care of your health/you so you can get back to living!
    Best, Shelly

  4. KimberlyHI
    KimberlyFebruary 5, 2013 at 12:01 am #

    Hi Ashley, wow I’m sorry you have been feeling so bad. When I first started having symptoms my primary care doctor tried to figure out for a year what was wrong with no succcess. I finally was referred to a gastro doc and he knew right away it was UC. Geez all that time, a whole year, and this guy already knows what is going on? After a colonoscopy with some biopsies he confirmed the UC and we started treatment. But it was very frustrating. I hope that you see someone soon who can help you more!
    Well, if you are flaring diet might help like the previous comments mention, a lot of times docs say to eat rice and potatos and a bland diet. But in researching the SCD and GAPS diets according to them breads and grains and potatos can make us worse! Accoring to the SCD diet plan we should be avoiding grains, sugars, and dairy (except a homemade yogurt) and we should be eating meats, fish, fruits and veggies. It seems to help a lot of people.
    I am on a medication called remicade because asacol and other meds stopped working for me. Remicade is working for me, it shuts down the immune system which helps reduce the inflammation. But in addition to this medication I am trying the SCD and it is not as bad as I thought it would be. Remicade is very expensive and not something that seems good long term! So hoping diet will help, I know the diets don’t work for everyone but maybe try? Also probiotics, and some people say olive oil helps! If you research this site and look at other stories there are lots of things to try that are no side effects and less expensive.
    Last time I was hospitalized it was 4 days, I was being pumped with meds in the IV, when I left to go home I was soooo bloated I could barely walk because of all that IV crap. That makes a flare even worse too! I’m on celexa too, I went on it in 2007 thinking it would help with my UC, because UC is so stress related it seems and I have always been a pretty anxious person. I thought maybe with Celexa it would help me not stress so much and that would help the UC. Well it definately helps a lot with the anxiety and stress I was having, although my UC hasn’t changed. But I keep taking it because it helps me a lot with the anxiety.
    I hope you are feeling better soon!! Hang in there!!

  5. AngelaFebruary 5, 2013 at 6:09 pm #

    Hi Ashley,

    Sorry to hear that! Not knowing is the hard part! Ask about the PROMETHEUS IBD sgi Diagnostic blood test. Its a new way to determine if you do or don’t have UC (my doctor had me doing their remicade antibody test which is how I heard about this). And Shelly is right! You need to see a gastroenterologist! I was diagnosed with an auto-antibody blood test and a colonoscopy (over 10 years ago). You should probably have one. Only way to really see what’s going on inside is to look. Also, ask for a lactoferrin stool test. It can help determine an active disease even if its not visible (it shows specific white blood cells from inflammation in the intestines, blood white blood cell tests just say that there’s inflammation somewhere in your body just not where).

    Here’s info on the test that you can print and take to your doctor.

    http://www.prometheuslabs.com/Resources/IBDDiagnostic/IBD-sgi-Product-Detail.pdf
    http://www.prometheuspatients.com/Conditions_IBD.asp

    Also, my sister had her gall bladder out. She gets all those symptoms when she’s not careful with her diet. Fatty foods are the worst for her as is caffeine.

    I wishing the best for you!

    Angela

  6. Single ParentFebruary 5, 2013 at 8:33 pm #

    Hey Ashley. First of all let me say that you are not alone!! I struggled with my symptoms for about 6 months before I was diagnosed. Like you, I was treated with all sorts of antibiotics at first. Once I was diagnosed my GI told me that antibiotics make UC worse. So if you had it then the flagyl and cipro, etc would only make it worse. Antibiotics work for Crohns Disease but not UC. I have been dealing with my flare up for about 5 months now. I was recently put on Imuran 50mg then upped to 100mg. I am on Prednisone 30mg and 4 Lialda a day. My flare up seems to be going away for now. The prednisone is just now making me gain weight because I have been on it for 4 straight months now and that is the longest I have been on it at one time without tapering off. I am lucky because the Imuran doesn’t make me sick as I have heard some people say in here. I haven’t tried the probiotics yet but I plan to very soon. I just want to tell you to be strong and hang in there. I have learned that what works for some doesn’t work for me. You have to learn and get familiar with your disease. I hope you find relief soon. I will be praying for you! God Bless

  7. zaynaFebruary 10, 2013 at 6:27 am #

    Hi Ashley,

    I am so sorry for what you are going through. During my flare ups I experience the same symptoms as you and even with the support of my doctors it is still so isolating and feels like there is no end in sight. I can only imagine what it is like for you without a GI doctor who you can feel confidence in.

    My best advice is keep reading this site and get information from people who have tried diet solutions; supplement solutions like probiotics, etc. I find even though I am under a doctor’s care I get just as valuable information from others on this site who have UC and know what they are talking about. Hang in there and know that all of us with UC are in this together and we know exactly what you are going through.

    For me what works: Prednisone is the only thing that gets me out of a severe flare up; Asacol/Lialda are maintenance medications and for many people with severe UC they won’t get you out of a flare. To stay healthy I am on SCD diet (I get out of control sick when I don’t follow this diet); 4000 Vitamin D3 daily; I am about to start on Probiotics and some of the other supplements that Bev recommends. Try just eating from the SCD diet for a week and see if it helps at all. The real change takes a month or two but you may feel a little relief after a week. All of us are different so reading each of the recommendations you will find one that works for you.

    Good luck and God Bless!

  8. Ashley L
    AshleyMarch 12, 2013 at 8:31 am #

    Hi everyone. I am sorry it took me so long to respond to any of you. My wife and little sister were hit head on by a ydrunk driver while sitting at a red light Jan. 20th. So. I have had a lot going on.
    My update:
    I stopped taking the asacol because I felt so horrible on it and it didn’t help. I have also stopped the flagyl and cipro. Of course I have some on standby just in case. My primary care doctor sent in for me a referral to a GI doctor the 1st of the year that was based on my income due to me not having insurance and being able to work but they were so overwhelmed with new patients that they couldn’t accept me any time soon. Which sucks because that was the only one in my area affordable for me.
    Now, I am on zero meds for anything. I am just trying to control it the best I can fro
    Sm reading and researching online.
    I am in my final stages for disability/ssi. I went to 2 appts. They scheduled for me and the medical examiner is reviewing everything now. I have a lawyer so hopefully I will hear something soon.
    thank you all for your responses and I hope all of you are feeling better or at least ok

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