I’ve Got Colitis and I Feel Alone

kerrys colitisIntroduction:

I’m Kerry. I was born in New York but currently live in Pennsylvania, USA. I’m 32 years old, and was just diagnosed with colitis three weeks ago.

Symptoms:

Urgent chronic Diarrhea, bloody stools, mucous in stool, joint pain, slight fever

I’ve Got Colitis and I Feel Alone:

I’m Kerry and I have suffered with UC for twelve years, I believe (I’m 32), but was diagnosed three weeks ago. I had the same symptoms 12 years ago, mucousy, bloody diarrhea, fever, belly pain, and joint pain. Went to the E.R. in Pittsburgh and got diagnosed with arthritis at the age of 20. No tests, no nothing(probably because no insurance either, at the time.) I then went back to the doctor and he told me there was nothing wrong. So I dealt with it.

Right before Christmas, I got the worst diarrhea ever.

  It was like the uncontrollable urge to throw up,

but out of the other end.

 

There was no “holding it.” So I had a colonoscopy , the doc took biopsies and found out it was Chronic Active Colitis (is this different from UC?), although the doctor said my colon looked beautiful, probably because there was still stool in it and he couldn’t see it right away, which he should have just told me he didn’t know. I was prescribed Lialda, and have been taking it for three weeks. I called two days ago to tell the gastroenterology people it wasn’t working and the secretary said to me,

” I thought I told you not to call until three months had gone by

and tell us how you were doing.”

That’s it. No explanation, no diet to follow, no nothing. If I hadn’t researched it, I would know nothing about what I have. Anyway, so no one seems concerned about my colitis but me. Everyone else thinks it’s no big deal. My husband came home and told me so-and-so from work has it. He takes pills. He’s fine.  When I was explaining to people about it at church this morning I was interrupted and told that what they were interrupting me with was more important. I’m not dramatic or a hypochondriac, but is it too much to ask for someone to listen to me??

Colitis Medications:

I’ve only been on Lialda, and so far I can tell you that it is very expensive and it doesn’t work, and no one is listening to me that it doesn’t.

written by Kerry

submitted in the Colitis Venting Area




23 Responses to I’ve Got Colitis and I Feel Alone

  1. iman February 22, 2012 at 8:15 am #

    Hi Kerry,

    Im so sorry for what you’re going through. I Have crohns and I’ve felt like that for a very long time. We can talk private if you want.

    • Kish June 7, 2015 at 9:59 am #

      I’m going thru the same thing n worse I’m so scared.i have 4 kids n I feel bad not being able to do the normal things with them. I’m in the bed n bathroom all the time.. I wish there was a cure

  2. ronne February 22, 2012 at 12:02 pm #

    Hi Kerry,
    Trust me your are definatly not alone. I got dianosed in March of 2011, and i had no idea what crohns or colitis was. Im in the army and deployed, before my deployment i was healthy as a horse. but when i came back a few months later my body did a 360 and landed me in the hospital. like you I kept going to my sick call(hospital) and they would not take me serious. After like 20 times going they finaly took me serious and got emited to find out i have ulcerative colits. they spoon fed me steroids witch when i was in the hospital they worked. when i got sent home it was ten times worse, i lost so much blood i needed a blood transfusion. then landed myself back in the hospital. so they gave me even more steroids and they kinda worked, i was still in massive pain.
    But finaly the doctor sugested humira, i was reluctent to take it cause all the proposed side affects. but i finaly did, and after about 4 weeks i began feeling beter… well anyway, i hope you find what works for you. let me know if maybee i can help…ronnie

    • ronne February 22, 2012 at 12:06 pm #

      sorry did not relize how badly i wrote that, if you want more info just ask..

  3. DTA February 22, 2012 at 12:08 pm #

    Hi Kerry!

    I’m the mom of a 17 year old son who is currently in a flare. He was diagnosed 3 years ago. Please e-mail me. I’d be happy to chat. So sorry you feel alone. :(

  4. sandra February 22, 2012 at 3:27 pm #

    Asacol is the same drug you are taking just more pills and cheaper.

  5. Bev February 22, 2012 at 4:53 pm #

    You are not alone…I promise. There are a ton of us, and together, we are not alone! We have all felt that way at times, though, I’m sure. I know that I have. It was very rude of the doctor’s office to treat you the way that they did when you phoned. Obviously, somebody there was having a bad day and took it out on you. Very unproffessional, and inhumane.

    Please email privately, all the people who want to be there for you. You should not feel alone, because I promise you…you aren’t!!

    You take care, and welcome to the IHAVEUC family. You are one of us now!!

    Thank goodness Adam started this wonderful place for us all to lean on each other.

    Bev:)

  6. Paul Willoughby February 22, 2012 at 4:59 pm #

    There’s a lot of us out there. I think you might need to find a new doctor.

    Paul

  7. Kathy Prieto February 22, 2012 at 5:21 pm #

    Unfortunately ur story is not unusual. Change Drs! Or, do what many here have done- look into diet and a lot of probiotics. My husband got worse after he came out of the hospital. He was in so much pain that if I moved a little in bed he would moan in his sleep. 1 week of doing kinda scd and a lot of probiotic- VSL #3, he started to improve. Of course, we were told diet has nothing to do with it and we had to ask for the prescription for VSL (insurance may cover this strength or u can order it online- the non prescription strength of VSL.
    We did change Drs but the types of suggestions were the same. However, the new dr was a lot nicer, but still- we pretty much did it on our own.

  8. Maggie February 22, 2012 at 5:24 pm #

    Sometimes people you talk to like you before you had it, don’t know or understand what you’re talking about so it’s easier to change the subject. It’s great to have a site where you can talk to lots of people who are going through it. Hope things get better for you and you get more understanding, at least you will on this site.

  9. Jessica February 22, 2012 at 7:19 pm #

    Hey Kerry,
    I get when you say that you have chronic active UC. I do too and it really sucks! It just doesn’t quit and that makes me so mad. Shire medications can suck it because Lialda is VERY expensive and it doesn’t work. I’ve been on their over-priced mesalamine for 6 months and it works like a placebo. I had to put up with horrible office people as well. They don’t suffer like we do and so they don’t realize that its BAD to ignore people that are bleeding out of their *sshole. I did find a good doctor eventually and she put me on prednisone and Lialda both. The steroid worked like a charm but now she is weening me off of it. Now I’m down to one pill a day of the steroid and 4 pills of the Lialda and the UC is back. Full on sick to my stomach, tons of blood, pain in the belly, feeling like all I do is sh*t. Ulcerative Colitis is like an angry God, it makes you feel like if you don’t obey it will make an awful mess all over. For many people it does.

  10. Trina
    Trina February 22, 2012 at 10:46 pm #

    You poor thing. I can’t believe that was your response from the doctors office. I would change your diet to a low residue diet. Get on some probiotics and Fish oil too. I know that there’s support grOups out there. I’ve had colitis for approx 9 years and have felt alone many times. Maybe you should print out the side effects and maybe your husband will read it SEVERl times until he finally gets it. Some things work for one person but may not work for another. You should also keep a food log. I wish I would have done that when I first got diagnosed. When I first got diagnosed I was in denial for several of years. Hang in there and try to surround yourself around positive people. It really helps.

  11. Debby February 23, 2012 at 9:22 am #

    So sorry you feel alone. I felt the same way when first diagnosed thirty years ago.I have had many of the same encounters you have had. Please take time to read more about UC on a good quality website like http://www.mayoclinic.com.It will help greatly in terms of understanding UC.

    I hate this disease and wish I did not have it. I hate the fact that it makes me physically weak and prevents me from fully engaging in life when the disease is active. UC is much more than bloody diarrhea. There are meds that can help,though. Please take time to read about the various options you have and discuss them with a pharmacist.Today pharmacists are all graduating with their doctorates in pharmacy, and the plan is for physicians to diagnose illness and pharmacists to precribe meds.Pharmacists are underutilized in terms of disesase management.

    I hope this helps you and others. Do keep a journal and remember that you know your body best.Do share your feelings with your husband. He can be of help if you share honestly what you are going through. My UC was active for 18 months the last time, and there were some months my husband was buying me Ensure and diapers. Although it was humiliating,I needed both products. I had no appetite due to constant nausea and diarrhea and I got down to 83 pounds. So I needed nourishment-and diapers!

    Hang in there, and know that others are concerned about you and want you to be restored to good health! I am currently strong and well(azathioprine/Imuran finally worked for me) and enjoying life again. I wish you the same.

  12. Juliette
    Juliette February 23, 2012 at 2:40 pm #

    Kerry!
    I’m so so so sorry to hear what you have been going through. I’ve had colitis for 2 years now and here is my advice. DO NOT LISTEN TO YOUR DOCTORS. They really don’t want to help you, they just want to have you as a patient to use you for your money. I do not understand the doctors of today anymore. They are are all retards! You must do this on your own. Do your own research and change your DIET. That’s the cure. Diet! The doctors say it’s not because they don’t want to lose you as a patient because they want your $$$$. I finally changed my diet and for the first time ever am having no symptoms. This changed my life. Hope it helps you too! Best of luck. I know it’s hard but you can do it. Do it for your LIFE!

    Check this out: http://www.youtube.com/watch?v=tGKn7JC_ch8&feature=youtube_gdata_player
    What you should be eating: http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html

    Tips: Start slow and listen to your body. Start with the “healing foods” as mentioned in the video. Healing is the first step. Also daily probiotic pills without additives and a multiple enzyme pill to take with every meal worked wonders on me and will help your colon and digestion a lot!
    Hope this helps you the way it has and is helping me. Xoxo
    Juliette

  13. Bronny February 25, 2012 at 7:34 pm #

    Sounds like it is the gastroenterologist’s office that has treated you badly from what I understand. Sometimes you will get better service from your GP with respect to adjusting your medications. Chronic UC is a total pain. Never having times where it goes away is the worst.

    And yes, people do think that we are whinging. I found that when I was finally very direct about the fact that I was regularly shitting blood, then they understood that it was a serious ilness.

  14. George in Napa February 26, 2012 at 1:24 am #

    I’m sorry to hear that you are having such a rough time with your UC. I agree with what some of the others said…. its time for you to start looking for a new doctor. Please keep us posted as to how you’re doing.

  15. John Harmala February 28, 2012 at 7:15 am #

    Kerry,

    Diagnosed with ulcerative colitis over ten years ago, I also lived with the disease for several years before consulting a doctor. If I had recognized the symptoms sooner, I would not have waited because my gastroenterologist has been an essential partner through the process. Not only does has my doctor listened to me about my condition, he has taken the time to know me personally. Even the receptionist at his office remembers the birthday for my oldest daughter.

    Over the years, I have seen my GI more than any other doctor and I expect this will likely be true for you. Try to find one who is compatible with you. You might try contacting a local CCFA chapter support to get some references from people also suffering from UC.

  16. Kerry
    Kerry March 22, 2012 at 7:45 am #

    Hi again, everyone! Wow, 16 responses from people I don’t know. On facebook, where I have 238 friends, a whopping 3 of them have shown concern for me. This especially hurts because I have seen where people have stuffy noses and get all kinds of comments saying people will pray for them and offering advice. Makes me want to cry. I switched gastros this morning, and asked if I could have an appointment with the new guy. But here we go again. The secretary had NO idea why I wanted an appointment since I already had my diagnosis. I told her I wanted some information, and I was out of medicine. She told me I couldn’t have another script because he hadn’t seen me yet. After I had to pull teeth to even get an appt. Then I told her I had some more questions, and she heaved this big sigh. Oh, yeah, and as soon as I called and she answered, I was put on hold for five minutes. I don’t understand. Are UC sufferers automatically blacklisted? Or is it just me? It can’t be me, they haven’t even met me yet. And I really am very easygoing and easy to get along with. THANK YOU SOOOO MUCH FOR YOUR RESPONSES!!!! I’m very frustrated and ready to take matters into my own hands. I think I know as much as the doctors anyway, and could probably diagnose and cure myself without their help. We’ll see how my appointment goes. If these people continue to be hateful to me, I will stop contact with them. As for my friends and family, well, I’m still alone. :(

    • Tena
      Tena March 27, 2012 at 2:44 pm #

      I don’t know where in PA you live but if it is close to the Ohio border, I have a great gastro about an hour from the border in cleveland. He is very compassionate and when I need an immediate appt his secretary gets me in within 2-3 days. When I call and have questions or need anything he calls me back personally. How many people can say that their specialist calls them back personally. Please feel free to email me with any questions or if you need someone to chat with. I was diagnosed 17 years ago.
      tena.nutting@yahoo.com

  17. Katie March 30, 2012 at 10:12 am #

    First of all, you need a new doctor! You a re dealing with a serious and frustrating disease and deserve attention and an explanation. I am 24 yrs old and was dignosed when I was 15. I have never been in remission and just recently had my colon removed. I have tried remicade(had a HORRIBLE reaction), prenisone, Asacol, sulfasalazine, Lialda, and the list goes on. You are not alone, there are so many people going through the same thing, probably even people you know, but because of UC’s nature people don’t like to openly talk about which just sucks. About once I month I would have a breakdown and just feel so bad for myself and think “why me?” but then I would immediatly think that it could be so much worse and that I was being dramatic. This just made me feel like I didn’t have a right to be upset about what I was going through. Even though I had support from my family I still have felt alone through most of it. Having UC through most of my teens and early twenties has put a damper on my social life, but I c=have a few things that I do to manage and keep things as normal as possible. Please Email me if you want to talk or want a few tips. I hope everything gets better, and just remember that you are not alone and that you have everyone here who understands.

    Hope to hear from you,
    Katie
    mccallum_katie@hotmail.com

  18. Kerry
    Kerry April 2, 2012 at 9:11 pm #

    Thanks, Tena and Katie! I live in Johnstown, PA, so that’s not close to Ohio, but YAY, I went to my new gastro today and I actually feel a lot better about things. He was very knowledgable and answered all my questions. He put my mind at ease when he said I would be closely monitored so that if they caught any cancer, which people who have uc are susceptible to, they would catch it really early and be able to do something about it. He was impressed with my knowledge about it, but when no one is telling you anything, that’s what you have to do-educate yourself, if you are able to, and thankfully, I am. I now have to see a skin doctor also though, because I have lesions which have shown up on my arm, in my mouth, and on my ear. Oh, well, like you said, it could be much worse. The skin lesions are called erythema nodosum, and I don’t think the link is well known. He also gave me the local chapter of the colitis and chrone’s disease organization. I walked out of his office on cloud nine! That’s all I wanted, just for someone to take me seriously and listen to me. So happy!

    • cory November 14, 2013 at 4:13 pm #

      What happened to you, no update? I live in j-town also and suspect my wife has symptoms of the same thing. She can’t go anywhere and has no quality of life. Doctors in this town just plain suck!

  19. William July 20, 2012 at 3:14 pm #

    I had some bleeding so I had a colonoscopy done. It was done today and all the doctor said was colitis, gave me script of asacol (which was $300 but cost me $129 with insurance) and said to come back in three months. He said he also removed to ulcers and is sending them for biopsy.

    I don’t suffer from any other symptoms other than the bleeding and even then its not every time I have to go.

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