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I Hate My Guts

JuneMeet June:

I was diagnosed with UC in 1999 while pregnant with my son. I still had a fairly “normal” life, only flaring maybe twice a year. My first hospital stay was in the summer of 2008 because nothing else was working to get my flare under control. I remember that was a very stressful time in my life, and it’s been downhill since.

Some more about June:

I am a homebody/loner even before I was diagnosed with UC, but with the progression of this disease I have become a Hermit. I fear leaving the house or not being near a toilet, and only have contact with family. I have absolutely no social life, and feel like a horrible mother because I can’t even take my kids out for shopping, movies, the park, etc.

Symptoms:

Currently, I am being referred to a specialist that is 3 hours away (why hasn’t teleportation been invented yet?) because my Gastroenterologist doesn’t know what to do anymore. I am in the bathroom every hour (or more) with cramping, and bloody diarrhea for a good part of my days. I seem to do better at night, until I go to bed, and then I’m up at least 3 or 4 times. I am exhausted and frustrated and I don’t know what to do anymore either.

I Hate My Guts

I am a single mother of three amazing children aged 16,14 and 3, who have had to lose out on a lot because of my UC. I have shared custody with my two eldest children’s father, and get to have them every other week. My youngest does not know her father because he left us while I was pregnant with her. I am unable to work because of my UC, and have had to move in with my parents. This has been difficult as well, because my parents want to be grandparents, and find this to be hard to do while having to step in so much when I am feeling too weak or sick.

I just want be “normal” and live my life! I want to be able to take care of my children myself, and not be a burden on anyone! I want to work a regular job, and have friends again, and be able to take my children out and do fun things! I am feeling more discouraged and hopeless with every passing day. Next week I am seeing a specialist in Orlando (3 hours away), and though I have a great fear of traveling, it has given me some hope that maybe something else can be done. I have tried all the different diets, supplements, blah- blahs and yada-yadas…NOTHING WORKS! I thought I would NEVER be able to do the Humira self-injections, but now I am(even though they don’t seem to be making any difference). I thought I’ll never be able to do surgery, but now if that’s what this new Dr. wants, then bring it! I will do anything to get my life back. To give my children the mother they deserve! I am trying to find the silver lining in all of this, and not let this disease beat me down…but if there was a scoreboard…right now, UC is winning.

Medications:

I just finished a Prednisone taper, and of course without it it’s like I’m right back where I was. I know I can’t always be on the dreaded Pred, but it’s the only thing that controls the urgencies and frequencies. In the meantime, I am on 40mg Humira injections every week, 50 mg Azathioprine, Zoloft (for anxiety), and Delzicol- because my insurance won’t approve my Lialda, but because I have insurance I can no longer do Lialda patient assistance.

written by June

submitted in the colitis venting area




34 Responses to I Hate My Guts

  1. Adam
    Adam October 19, 2014 at 12:42 pm #

    Hi June,

    I hope you have a great visit with the new GI, and please keep us posted on how things go. I know its hard, but you’ve got to realize that you’re going to get out of this UC funk you’re in one way or another. And once things start to calm down, I suspect you will be like so many others who find happiness once again (even with having UC, amazing right:) its gonna happen to you soon. So hang in there and thanks again for sharing your story:)
    -Adam

  2. Bev October 19, 2014 at 1:32 pm #

    Man…this is so discouraging…WHEN WILL A CURE BE FOUND FOR UC???

    I’ll tell you all…if every doctor’s husband or wife had it, well, then we might see some action!

    June outlines and explains beautifully (even tho that is too nice a word for what UC is like to live with) exactly how helpless and hopeless UC can get us feeling. I am so very fortunate at the moment to be in a 3 year remission with absolutely NO symptoms, and I want that for all of us.

    This is getting ridiculous that day after day, more and more people are getting this godforsaken condition. There MUST be a way out of UC. It has got to be one of the WORST things to try and live with.

    All I can say, June, is, here we go with the cliché…hang in there. I don’t know what this specialist in Orlando can offer you, if anything, but I do believe that better NATURAL treatments are on the horizon. Shit, they HAVE to be, don’t they??? Ask about fecal transplants in a pill form. You are in the US, so perhaps you can get in on a trial? Screw the harsh drugs…they do not seem to work anyway.

    I cannot imagine having three children and dealing with the dreaded UC! You deserve a freaking medal, my friend.

    :)

    • Ana Paula October 19, 2014 at 1:53 pm #

      Wow Bev… it is impressing to be in the 3rd year of remission. I started my son on the Ultimate Flora 30 billion and yesterday I started the L-Glutamine. He has been off the Prednisone for 13 days now but yesterday had 2 bowel movement with a little bit of blood. He is not on a flare per say,; and dont want to think one is on its way. He is not feeling sick, and using the restroom about 2 times a day.
      Bev, if itnis not too personal to ask, do you have UC in the entire colon? I pray that soon I can see my son in real remission.

      • Bev October 19, 2014 at 2:23 pm #

        Hi Ana,

        That is not too personal a question to ask, at all. I do, apparently, have pancolitis, which is the entire colon. I say ‘apparently’ because I am not sure what to believe any more. I was first diagnosed with proctitis, but within 5 years, it was ‘upgraded’ to pancolitis.

        I am not so sure about this condition at all…what causes it…why it does not go away once you have it. I am not sure whether it is autoimmune or a bacterial imbalance, or a combination of both. I almost feel like I know less about UC itself these days than I used to think I knew. I do know so much more about treating and managing it, now though, thank goodness. I don’t know where I would be if I had not gotten off the meds. Thank goodness I discovered the probiotics and the L-glutamine, etc.

        For some reason, I have not bled in quite awhile, but there have been times (many) over the past 3+ years in remission that I have seen blood. Sometimes just a little…sometimes a bit more. It does not mean that I am in a full blown flare, but rather, I take it to mean that perhaps a certain food has not agreed with me, or perhaps even a bit too much stress every so often? I don’t even worry about it any more. I know when I am in a real flare…the pain, the urgency, the fatigue. It’s hard to miss that! That never seems to happen to me any more, especially now that I am off the meds. I am so fortunate right now and I want to remain that way forever…

      • Bev October 19, 2014 at 2:29 pm #

        Ana, I guess what I am trying to convey is that a bit of blood, while worrisome for so called ‘normal’ people without UC, can, unfortunately, be ‘normal’ for us. It should not be a lot, though. Just a bit.

        There are some, including the doctors that maintain that ANY blood is not good. That may be, but after living with UC for almost 20 years, I beg to differ. I do not panic at the first sight of it. I just plug away and try and figure out what may have caused it that day. Then, I think about something else!!

        :)

    • Mary October 19, 2014 at 2:26 pm #

      Hi June,
      It upsets me that so many people are like you with this dreadful disease. You are lucky to have wonderful parents and understanding children!
      My son who is 23 has had ulcerative colitis for the last 7 years. His journey with this disease was shocking – many serious side effects with the medications and originally diagnosed with proctitis which not long after, turned into pancolitis. I wont go into his story, but we have hopped from gastroenteroligist to gastroenterologist etc and are now in the hands of a wonderful doctor (Sydney, Australia) who has given my son his life back! This doctor believes ulcerative colitis is bacterial. He is behind a recent study in Boston which successfully treated patients suffering from C-diff with the FMT Pill and the FMT Pill is going to become available to treat ulcerative colitis in the future. In the meantime, he put my son on an antimicrobial, non-absorbable antibiotic called Rifaximin. This is long term until the FMT Pill becomes available – my son has been on it since June this year. Before that my son was doing the 40mg prednisine taper (kept going back up after he reached 15 mg as he would go into a bad flare). He was prescribed 50 mg 6 mp early last year and it simply doesn’t work and he can’t go above 50 mg as he doesn’t tolerate it, but for the time being he has decided to keep taking it (it comes from the fear the previous gastroenterologist planted).
      The success my son has is with Rifaximin, 1 scoop l glutamine and astaxanthin. He eats organic food, no dairy (couldn’t tolerate gluten but enjoys it now!), he doesn’t take a probiotic and feels 100%. He swims 2500 metres daily, is a medical student and is able to enjoy a great social life.
      June, it is always helpful to go to doctor’s visits armed with knowledge. One thing I have noticed with doctors is that they are always quick to say other doctors ideas do not work. When in fact most of their ideas do not work as people are not getting better!

      • Mary October 19, 2014 at 2:51 pm #

        Also, I do worry about my son not keeping a probiotic in the mix, especially as he takes an antibiotic, but he follows a high fibre diet, which could be helping to build his good bacteria.

        • Bev October 19, 2014 at 3:16 pm #

          Yes.

      • Lynn October 19, 2014 at 11:01 pm #

        Mary –

        What is the dosage of rifaximin your son takes? Where can you order the meds? In the US very expensive.

        • Mary October 20, 2014 at 5:37 am #

          Hi Lynn,
          My son takes 500mg morning and night (1000 daily). We fill the prescription at a Compounding Chemist here in Sydney. Lynn, there must be a gastroenterologist in the United States who works closely with my son’s gastroenterologist and may offer the same style of treatment. I recall Ella is about to start her daughter on the antibiotics and I think she is also in the States. Otherwise, by ringing the Sydney Centre, they may be able to direct you to a gastroenterologist in the States.

          • Lynn October 23, 2014 at 10:07 am #

            Hi Mary –

            Getting the Rifaximin prescription soon. When did he take the probiotics? Important to take away from the antibiotics. I know he isn’t taking them now but initially what directions did Dr. Borody give him?

          • Lynn October 23, 2014 at 10:12 am #

            hi Mary –

            Also how long before he got results? Day, week month?

          • Mary October 23, 2014 at 1:54 pm #

            Hi Lynn, he took the probiotic (called Pro 200) at lunch time. Rifaximin is taken in the morning and at night which left a good gap between taking the antibiotic. He noticed a great improvement within a week and it enabled him to taper off prednisone without going back into a flare. I am so happy you are trying this for your son and I hope and pray will work. Prof Borody also said to us this dosage is a low one and can always be increased.

          • Lynn October 23, 2014 at 2:40 pm #

            Mary –

            Didn’t quite understand your last sentence. Are you referring to the probiotic or Rifaximin in a larger dose? You said 500mgs in the morning and 500mgs at night. Does he take the L-Glutamine away from the Rifaximin and in the am?

          • Mary October 23, 2014 at 3:04 pm #

            Hi Lynn, sorry I rushed through my last post as I am about to go out. At the time of my son’s appointment my son was on VSL 3 which was fine with Borody. When we filled the script at the compounding chemist, the pharmacist said pro 200 (200 billion) is better, so we decided to try that as my son thought it better to take a pill instead of VSL powder at Uni.

            Regarding Borody’s comments re dosage, I was referring to Rifaximin. The dosage he is on has been perfect though.

            At the time he started l glutamine he took 1 scoop am (same time as rifaximin ) and 2 scoops before bed (rifaximin is taken after dinner). He also takes astaxanthin in the morning with breakfast. He takes 500 mg am and 500mg pm rifaximin. The 6 mp is taken after dinner (50mg) (you know my thoughts in this drug!). Please feel free to ask me anything you wish.

          • Mary October 23, 2014 at 3:06 pm #

            Lynn, he down to 1 scoop l glutamine which he still takes in an empty stomach first thing in the morning.

          • Lynn October 26, 2014 at 8:24 am #

            Hi Mary-

            I have more questions, my e-mail is wegel@uwalumni.com

            Why do you think the 6mp is not working?

            Lynn

  3. Tom
    Tom October 19, 2014 at 1:57 pm #

    If surgery is what the new GI suggests I think you should go for it.

    I did and haven’t looked back since

    • Bev October 19, 2014 at 2:25 pm #

      I agree with Tom. here. Surgery is definitely a way OUT of UC!!

      At least we all have that knowledge. That is POWER!! Just knowing that we all have an ‘out’

      :)

  4. Kyle
    Kyle October 19, 2014 at 2:49 pm #

    Wow. I cannot even begin to express my apologies for what you are going through. I don’t know if u have had this conversation but have you ever considered looking at surgery. Not that I press it on anyone but with your current state I wouldn’t feel right not asking you if you have looked into it. I have two resources that I would encourage you to check out : Coloradoostomy.com and stolencolon.com these are two amazing stories about people who were truly given a second chance at life. No pressure but just want to get the resource in your hands. Best of luck.

    Blessings,

    Kyle

  5. June D
    June October 19, 2014 at 5:08 pm #

    Thank you all for your replies and suggestions! I do apologize for it being such a whiny sob story! But I am very grateful to this site, and to all of you because I do know I can no longer go through this alone and ashamed! My family has been wonderful, but it is so comforting to hear from others who really know what I am going through! I will be researching surgery more, and also the L-Glutamine and probiotics! Thank you all again!

    • Bev October 19, 2014 at 9:54 pm #

      No apologies, June. You are not a whiny sob story!!

      This is a mother***er of a condition to have, no??

      We’ve all been there.

    • Kyle
      Kyle October 22, 2014 at 11:19 am #

      Whiny Sob Story? We have all been there. You are not alone in the feelings you are feelings June. This is a great place to express and connect with people dealing with or who have dealt with the beauty that is UC. Hope things start turning around for you.

      Kyle

  6. k October 19, 2014 at 5:23 pm #

    June,
    I had surgery 39 years ago. It was emergency surgery, so it happened very quickly and I really didn’t have to ponder it. It made life possible again. I still consider it a miracle.
    My thoughts are with you and I hope one way or another you are returned to good health.
    k

    • Judith K
      Judith Kupstis October 20, 2014 at 3:02 pm #

      I am scheduled for surgery this Nov 6th and I am terrified but after 28 years dealing with UC, there does not seem to be another option for me. Congrats on 39 years post op. that’s really great to hear!!! JudyK

      • Tom
        Tom October 20, 2014 at 11:47 pm #

        Judith

        There are loads of great groups on Facebook with literally thousands of people with stomas. They are ate always eager to help with any questions or problems you have. One is called Illeostomy and another is My bag & I.

        I hope you will join

        All the best

        Tom

      • k October 25, 2014 at 6:52 pm #

        Hi Judith,
        I can’t imagine the courage it would take to live with uc for 28 years. I think you have already faced the hard part. I hope as November 6 approaches your fears lessen. Please begin to think of / focus on after the surgery and how much easier your life should be.
        k

        • Judith K
          Judith Kupstis October 26, 2014 at 12:09 pm #

          Thank you for your kind words. There are so many great stories on this site! I am not feeling so alone!! Judy K

          • Kira H
            Kira October 26, 2014 at 3:53 pm #

            Judith I know you saw my story and I just wanted to say hang in there. You must be a strong person since you have lived with UC so long!! This disease is much worse than the surgery, the ileostomy, and the bag!! Keep reading the stories here, they gave me the courage to go forward and at 5 weeks post surgery I feel so much better. And I know it’s just going to get better! Good luck to you. Hugs

  7. Kira H
    Kira October 19, 2014 at 8:15 pm #

    June your story sounds so similar to mine- diagnosed in ’95, did fine until the last 5-6 years and just got progressively worse. I also have 3 kida. I am 4 weeks post colectomy tomorrow and I am so glad I did it. My story is posted on the site and I just sent adam an update. But I will say it was the right decision- my colon was absessing and ready to perforate ( and at the time I really wasn’t feeling that bad). today I was able to take my daughter to the mall and I even ate a couple pretzel bites with her! That never would have happened before. I’m not saying there aren’t challenges, but the benefits outway them already! Good luck to you! Email me if you have any desire.
    Kira

  8. Manny October 20, 2014 at 11:27 am #

    Make sure the Zoloft you are taking is not the problem…it is known to be problematic for people with IBD. It was for me, as it caused severe diarrhea. There are many other options you can discuss with your doctor for anxiety. My prayers go out to you, and good luck with your new Gastro. :)

  9. June D
    June November 2, 2014 at 6:47 am #

    So..it looks like I’m going to have a Colectomy…I meet with with the surgeon next month. My Gastro put me back on a prednisone taper along with my other meds, and that has helped calm my flare for now. I have also switched from Zoloft to Wellbutrin because of some suggestions on here about Zoloft not being good for the tummy…thank you for that! Not sure if it makes a difference, but it’s not hurting so that’s really all that matters right now! I know for sure the Prednisone works! I wish there was some way to stay on that and not have the nasty side effects! I try to describe it to my family as: It makes me feel like my blood is constantly boiling! Or I’m like a tea kettle just before the whistle 24-7! Anyone else feel this way?
    I am nervous about the surgery, but I am doing lots of research, and really just want to get it all out of me!!!
    Thank you so much again to everyone for your feedback, especially about having had surgery too, and getting your life back! It has definitely helped in making this decision, and I look forward to coming back on here and sharing good life stuff!

    • Judith K
      Judith Kupstis November 2, 2014 at 9:18 am #

      Hello June, I am going in for surgery to have my colon and rectum removed this coming Thursday. I know what a shock it is to find out that is the cure for the disease after dealing with the horrors of it for the past 28 years. I am not fond of hospitals at all!! I spent a couple of weeks just processing the news and now that it’s so close I go from “let’s get this over with!” to “hell no, I can’t do this!” This site has been a god send for me. It helps to know we are not alone. Although some times it’s too much information, a lot of my questions have been answered and fears lessened. I have been told that I should be in the hospital for about one week and in 2 surgeries over the next couple of months. My surgery Thursday will be to remove my colon and rectum and create a jpouch and a temporary stoma in my belly for the elimination of waste while the jpouch heals. The second surgery will be to hook up the jpouch to my anus and remove the temporary outside bag. Hopefully this will work and will enable me to function without a permanent bag outside. Only when the surgery is happening will the surgeon be sure that option is a good one for me. Either way, without the colon, the UC will be gone and once healed I hope to have a better quality of life without UC. Best of luck to you!! I will keep you posted and hope to hear your success story soon!

      • June D
        June November 2, 2014 at 10:55 am #

        Judith, I wish you the very best this Thursday! If you don’t mind posting about it, I would like to hear how everything goes!

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