Ulcerative Colitis Tips


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I have a UC and Keeping my Secret

I am from Jordan I have been diagnosed with multiple ulcers in my colitis back in  2003 and it’s moderately active, but for two years before my diagnose I suffered from the symptoms not knowing the reason , bleeding, lost of appetite ..etc

So when I was first diagnosed I had a name for my weakness at least which I thought was normal and I started to forget how it feels to be healthy!

At the beginning of my UC treatment journey I was prescribed to take pentasa  6 pills a day, besides Imuran , and Cortisone for couple of months and folic acid as I was losing a lot of blood over the two years which caused me severe anemia , therefore when I got really weak and pale my family started to notice me as I was neglecting my self and too shy to talk about it ! So first time I didn’t do a colonoscopy but the doctor diagnosed me with severe anemia and gave me only vitamins, which did not work for me, so two months after I went to a specialist as I was entered immediately to the hospital and had a colonoscopy and this is when I knew, at first I really didn’t get it, as I was basically illiterate in that domain, for someone like me perfectly healthy and suddenly crash down so why would I know! But eventfully I had to , it took me about 5 years to fully understand what I have as you become your own doctor when you have a chronic disease , I couldn’t understand the part that every month I go to the clinic to get my prescription and ask the doctor would it cure and he gave me the same exact typical answer ‘no it won’t cure your UC the medicine is only to reduce the symptoms ‘ So I understand that it’s something I have to live with for the rest of my life and cope with it , but I really want to take control of it and not let it take over my life as I am still in my twenties and have a full life ahead of me , so I got recently engaged , but didn’t tell my fiancé about my condition  , how would he understand , it took me almost 5 years with living the UC to fully understand what UC is all about , not sure if anybody in the same situation, but I just don’t want him to see the sick part , as it makes me feel good and healthy and not different that fact that he dose not know , so if I tell him every time I may use the bathroom he would think it must be her UC  ,so  I never complain about it or even mention it but it’s kinda getting wired for me not telling him now that we are getting married soon, eventually he might notice in case I got a flare up, as it’s way too embarrassing for me to share such thing  , therefore I am always keeping healthy as I recently found out that a healthy diet can actually help ! So I still didn’t find out the perfect one for me I already know that diary product and fried food are a big no no in our condition , so I am starting to cut down the bad food for me as I also cut the pentasta which I have been taking for the last 7 years , what’s the worse could happen I already have flare up with the pentasa every now and then  , so finally a healthy diet is what I believe in , also trying not to think of my UC can help , as if I am normal but I need to go to the bathroom more frequent than normal people .

I was wondering if anybody had a colon therapy before and would it help or cause more damage!?

Do you have UC and you are way to shy that you don’t want your other half to know your weakness so looking health in front of his eyes will actually make you feel healthy?

Regards

Tayra

انا من الأردن و اعاني من اتهاب القولون التقرحي ، في حالتي اعاني من  سهال مصحوبا بخروج الدم مع البراز. لقد تم تشخيصي في عام 2003 و لكن قبل سنتين من التشخيص عانيت من الاعراض دون الذهاب الى الطبيب و نتيجة الاهمال ادت الاعراض لاحداث فقر في الدم لدرجة انه تم ادخالى الى المشفي و تشخيص حالتي بهذا المرض المزمن .

هل هناك احد من العالم العربي يود مشاركتي ؟ هلو توصلت الى حمية مناسبة تود مشاركتها معنا ؟ و كيف تتعامل انت مع المرض ؟






bleeding, colonoscopy, condition, cure, folic acid, imuran, pentasa, symptoms, treatment, UC

5 Responses to I have a UC and Keeping my Secret

  1. Sheli March 17, 2010 at 9:05 am #

    Hey Tayra,

    I was so moved by your story! I totally know what it’s like to be super embarrassed about your UC! I started having bathroom problems 2 years into my marriage and then got diagnosed with UC 6 months later… I totally know what it’s like try to cover up what’s going on. But, I’ve had to slowly unveil my symptoms to him when things started to get bad and money got involved! Once I had to start seeing a specialist (Gastroenterologist), my husband began learning little by little what was going on. I think my husband learns a little more each time I’ve had to get a new medicine or my symptoms change because it affects his life too! We make financial decisions together so he knows where our money is going, so we’ve had to be open about my therapy.

    I do also share with him about things that are going on with my symptoms and seriously, sometimes he doesn’t know how to take it all the time, but he always listens and gives me a hug. But i can be awkward to talk about! Honestly, I think it’s awkward to be a woman and talk about your bowel issues. I NEVER like talking about the details of my disease with anyone other than an 2-3 people i know and trust. I thought bowel movements and the colon were meant for guy jokes and potty training, not a lady! So yea, it’s totally tough to talk about and especially when you’re relationship is going to the next step like marriage. Congratulations by the way! How exciting! I’m sure that if your fiance loves you though, he’ll want to know sooner or later about this important part of your life. But don’t worry, you don’t have to share all the details to explain you have a disease and the basics of how it works :)

    Also, I was wondering if you could tell me more about what you mean by getting a “colon therapy”? I haven’t heard about that before?

    Good luck and hugs as you walk down your UC journey!

    -Sheli

    • Tayra March 22, 2010 at 2:14 am #

      Hi Sheli , thank you for you comment and advice :)

      To begin with , colon therapy is an alternative therapy like a way of cleaning your colon by infusion of water into the colon via the rectum. I read about it and the clinic said it heals Ulcers so I thought here is a big hope for me, but I didn’t want to take that risk before asking my Doctor so two days ago I asked him and once I said “Colon therapy” he gave me a big NO as it will leave me with more damage and worse situation, so I was kinda glad that I asked my Doctor because seriously I was about to do it!! The commercials makes it sound like a really healing thing but seriously if it really works like magic and heals UC then we would hear about it, or doctors may recommend it first place as I believe in alternative medicine , but not to the point were taking that risk !!

      You see I live with my family who knows I have UC of course and up to this point they still don’t understand what it’s really like! as they told me that I should have mentioned it to him, which I regret now not doing in the first place, As I am not sure now how will I get the medicine or how insurance works there , I will be moving to live with him in another country!! And I have been treated with pentasa which is all I need, I know I have said I want to stop taking it but after my last visit to the doctor I kinda think it’s to early now , that I am getting better each year not each day as when I compare my self to 7 years ago and the way it began I kinda got better , the bleeding comes for couple of month in a year sometimes , of course the flare ups visits every now and then , but I was wondering now after my last visit to the doctor , is it really the Pentasa !, as it’s a long term healing process, the doctor told me it reduce the symptoms and heals ulcers I have very slowly, which what happened over the years, yet I am not sure if I should believe it or not, because I get really disappointed and frustrated every time I have the symptoms back  the worse is when I have to wake up in the middle of the night and pay the WC a visit ahhh but these days I have been feeling good recently !! Eating good, reducing my pentasa from 6 pills a day to 4 pills a day . so basically my plan now is : healthy food and less pentasa as I will cut it in the near future I believe and I will share this moment of victory with you all which I hope to be soon !
      So I will take your advice next step will be opening up with him but only with the basics no need to make it look like as a drama :)
      Than you and wish you all the best :)

  2. Kristine March 21, 2010 at 4:11 pm #

    I was really moved by you story aswell. I got UC 13 years ago and I dident share it with anyone. It was just in the first year of our marriage when I got a bad flair up. I went to doctor after doctor to find out what was wrong. I couldent find a doctor who would take it seriously at that time. It might be mental/emotional…. maby a stomac flu ? they had lot of great idears lol Yes it is normal to run to the bathroom 10 time a day, running a fever daily, having mucus in you stool and eventualy blood, and being in excrutiating pain when the colon is cramping. Daily for over a year….. I gues that was why I dident tell anyone. I have been sitting in doctors offices weak and pale in tears and no one listens. So I became my own doctor.
    This lasted 1 1/2 years untill I heard that diet might work. So I tryed a moderated type of specific carb. diet and eliminated gluten and dairy. I stop running to the bathroom all the time and felt way better. 6 months of this and I went back to my old diet. Felt ok but had ups and down. Specily the bad colon cramps, yiks, I really dont miss those.
    It wasnet untill last year that my husband was diagnosed with Crohn, belive it or not, that I told him what I had been throug all thies years. Funny enough he dident notise anything. Typical men they dont see what is right in front of their nose lol ;-) He seen me change my diet, but ok I told everyone that it was because of food allergies. He seen me in bed with excrutiating stomac pains (I have a really hig tolerance for pain, but they can get so bad you want to pas out). He seen me saying no thankyou to friend and family invitations as I usaly felt horible from the foods I was served and found it embaresing running to the bathroom somtimes in the midle of diner. He seen me loss weight and being really weak and tired. Well he seen me running to the bathroom all the time. I really dont understand he dident notised anything. hehehe but I gues that is just how he is.
    I dident tell any one before now, well I do think I mentioned it years ago to my mother, but other than that no one. After being throug all of this again with my husband and meeting great understanding and caring doctors and hospital staff. I really had to heal all the pain that I have been throug (also the emotional one). I been so belssed that I can guide my husband when I comes to diet and nutrition, all my hard earned knowledge throug the years. I know what it feels like and can help him, Talk with the doctors a.s.o.
    I have decided to be open about it now. I have told it to several people and what a relif it is. It is like a lift being removed from my shoulders. I dont have to come up with wierd explanations any more. People understands me now. Why am I skinny and pale, why dont I eat like other people do, why dont I have as much energy as most people……
    I know this is not an easy topic to discus with people. And it is up to you when you are ready to tell him. But I think that it will be really good for both of you if you do. Dont go throug this alone like I did. And at some point he might find out anyway ;-)
    I wish I have told my husband years before, but I also totaly relate to the feeling of not wanting to be “the sick one”. Feeling healthy when no one knows. I have been surviving on that for years :-)
    I wish you best of luck and congratulation :-D

    • Tayra March 24, 2010 at 1:21 am #

      Hi Kristine,

      Thank you for sharing your experience it sounds a lot like what I was going through before and after being diagnosed , you see in the beginning they attribute what I have to emotional state , like depression or anger that some people can express their anger or depression and others their organs express it for them , to some point I do believe in that theory , I noticed when ever I had a sad thing in my life my colon feels sad too and then the bleeding begins , and specially when I am really nervous also it kicks in and I become more sensitive to food , and I know every case is totally different as I am not sure who began first the depression or the UC !! yes but it seems for everybody the first years are the hardest , I was 18-19 when it was really bad , and because of loosing all that blood with every effort I do like climbing the stairs was an effort my heart beats really fast and I couldn’t breath , yes severe anemia can do all that and more !! As thankfully I got over it now I know what I have.
      As for being skinny and thin, sometimes I think the only good thing about UC is it keeps us in a good shape , or it’s just me trying to find the positive side in UC – my mom and sister are sadly overweight – so my explanation is that I do like to keep healthy , as people who didn’t know or even the one who knows my condition thinks I am a diet freak or a health freak , both ways I don’t mind as long as its doing me good , I though would like to gain some weight , I did gain 5 kg when I was on cortisone , but for the long run it’s not the best way.
      Do you still have no energy ? I mean for me the days that I lose my energy is when I have to wake up at night to go to the bathroom and the bleeding days , recently I have been sleeping 8 straight hours !! And taking supplements – fish oil, multivitamins besides B12 vitamin injection it’s really unbelievable!! You see 95 % of Jordanians have B12 shortage and most of them are not aware of that , so the B12 gives you energy and kinda boost your mood , all the knowledge I gain are out of having UC ! as I am sure if I didn’t I wouldn’t care less and wait till I am really old to have one of the old peoples diseases , who knew it would come this soon ! How ironic , but looking to other people with really fatal disease I am thankful I have this as I am moving on with my life , and living a proper life with great accomplishments and I still wanna see the world and my UC did not prevent me and will not from doing so :)
      As for telling my fiancé , as I told shelly , I really wish now I have told him before :( well , just like in your case he kinda didn’t notice while we were together , as currently he lives in Australia and I will be moving with him soon , so we kinda didn’t spend much time together . And In Jordan I have a full insurance for my UC that the government takes full financial responsibility for people with cancer and chronic disease, but in government hospitals which is not the best, for me all I care is the pentasa which is pretty expensive, so I am sure my fiancé now has to be aware of that,we’ll see..

      Thank you again for your greeting and for sharing your story with me, it’s like same experience with another person , and I thought I was the only one lol
      :)

  3. Becka K
    betty June 28, 2010 at 11:14 am #

    it’s nice to know i am not alone in this respect. i was diagnosed with uc 10 yrs ago and hospitalized 2x for bad flares. thought everything was in remission with asacol but due to planning my wedding and various other things (none of which are good excuses), i missed a lot of doses and here i am a newlywed of 2 months in the hospital for the 3rd time. the drugs are not working like they did previously and i am so reluctant to tell my new husband that i am lying in the hospital rotting from the inside out, in constant pain and having as many as 40 pure bloody trips to the bathroom each day. how will he react when he reads the prognosis? will he want a divorce if i have to wear a disgusting bag? i am so depressed and angry at myself right now because i was fine only 2 short months ago. now my whole life could be altered forever.

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