Totally Alone – Diagnosed with Colitis Monday July 2, 2012

Meet Scarlett:
I’m 33 and have had symptoms since I was about 12.. I was diagnosed Monday 7/2/12. I’m pretty upset and feel really alone since everybody who doesn’t know keeps saying it won’t affect my quality of life in any way… I’d like to believe that’s true, but then I read stories online.. it seems that NOBODY is the same after being diagnosed. I’m really really scared. To be alone, misunderstood, and scared while facing a newly diagnosed chronic disease is not where I pictured myself at this stage in my life. It’s ALREADY affecting my job… all these doctor appointments, and every day is a struggle to open my eyes, let alone get out of bed and put a smile on my face and deal with everybody else’s problems. I just got promoted and will likely have to step down. :(
My Symptoms:
In the midst of my worst flare ever… passing out, lost about 20 lbs over the course of time (I’m short and already very thin framed). I’m totally self conscious and hate when people innocently say I’m lucky to be so thin.. I LOOK sick!! I’m not anemic… but losing a lot of blood, VERY run down… and pretty depressed.
Today I had 2 solid bowel movements… 1 with no visible blood.. I feel hopeful, but my colonoscopy is Friday, we’ll see.

My Colitis Story:

I ALWAYS thought it was Hemorrhoids and thought they were caused from riding horses… until very recently when I passed out for no known reason and went to the dr… I mentioned in passing the UC Symptoms I was having and she immediately told me to go to a specialist… I was scheduled for a Sigmoidoscopy… the Dr took 1 look and told me he wasn’t going to continue, and I will be going in for a Colonoscopy to determine the extent of the damage to my Colon next Friday… I feel so alone. I’m in a new town, no friends, no family here – have to go to my colonoscopy alone, and beg somebody I hardly know to drive me to and from.. Nobody in my family understands and they all say I should just put a smile on my face and keep on keeping on… I know they are trying to be helpful but I’m really depressed about this. I’ve lost loved ones already over the fact that they don’t understand what I’m going through and don&# 039;t want to listen to me as I find out more and more scary things about this.. or do their research to learn what I’m dealing with… they would rather just move on and not deal with somebody who is so broken.
I’m really worried about my quality of life going forward… ESPECIALLY my 1 passion in this world… Horseback riding. I’ve read stories where people can’t ride anymore with this disease, even with (especially with?) a J-Pouch. Does anybody here ride horses regularly? It’s been a pretty big part of my life for 23 years, and I can’t imagine being with out my horse.
How about having a baby? It’s gotta be common and possible with the onset of this being so young… please tell me I don’t have to worry about that… :(
I eat horribly.. and I like it.. I’m not sure how I’m going to cope with such a limited diet like I’ve been seeing people talking about. and I HATE Yogurt :(

Where I’d like to be in 1 year:
I’d LIKE to have a baby… I really hope that’s still an option for me… other than that, I’d ideally like to be able to ride my horse still, and eat like a normal person and be in remission… hey, it says where I’d Like to be right? (yes, I’m moving past denial… slowly).

Colitis Medications I’ve Used:
Nothing other than my multivitamin, fish oil, and D3 (I’ve always taken them)… my doctor is still determining the severity as it’s been less than a week.. I really don’t want to go on anything long term, I’d rather just go on meds to help when I’m in a flare. I’d almost rather live with this horrible flare than to be on steroids for the rest of my life. This is NOT going to be a smooth road for me.

written by Scarlett

submitted in the colitis venting area




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13 Responses to Totally Alone – Diagnosed with Colitis Monday July 2, 2012

  1. PeterNZ July 11, 2012 at 1:28 pm #

    Mate,
    You can find the worst of anything on the internet if you want to.
    I have had colitis bad, and sure, when you have a flare you are crook. Same as when you get the ‘flu, sprain an ankle, have a headache. I take the meds and then I am sweet again.
    Colitis hasn’t ruined my life….but then I haven’t let it.
    All the best,
    Peter

    • Bev July 11, 2012 at 2:12 pm #

      Listen to this guy…PeterNZ…he knows of which he speaks.

      Everyone of us with this disease is different, however, we all have will down days. We all will have up days. We all will have a flare. We all will go into remission.

      Acceptance and then happiness. We only live one time. Enjoy what time you have my friend!

      Cheers,
      Bev:)

  2. Jamie July 11, 2012 at 1:41 pm #

    Scarlett-
    I completely understand all your fears and frustrations, I have had them too. I can tell you that you can still give birth while having UC and while being on UC meds. I have a beautiful baby girl, and to be honest, I felt the best with my UC while I was pregnant.

    I currently follow the SCDiet. While it is not easy, it has helped me a lot.

    Good luck in your endevours and do NOT let UC get the best of you.

  3. PeterNZ July 11, 2012 at 2:20 pm #

    Too true Bev,
    Life is short – colitis or not.
    I have just got used to having it and it’s fine now.
    Take it easy,
    Peter

    • Bev July 11, 2012 at 5:50 pm #

      Cheers Peter:)

  4. amy July 11, 2012 at 3:51 pm #

    i can understand your fears and frustrations. I was diagnosed with UC about 2 months ago, since then had a major flare that put me in hospital for 10days( then caught pneumonia just to be sure i was really down for the count)I kind of got slapped with UC i guess. It has been quite a life changer for me and yes i think your life is going to be different but that doesn’t mean it’s going to be worse. You may have to change your diet in order to be healthy so that you can ride your horse and have a baby but I imagine those things would be worth it to you. Personally I’m trying to learn as much as I can about UC so that i can manage it the best i can. I miss eating some of things I used to but being healthy is more important to me. i stress about every BM and every weird pain now but i think that’s normal at first. I am lucky that I have a strong support system, I think that is important . If your family is not supportive maybe you could find a local support group..I know they are out there. Stressing and worrying is the worst thing to do for you and your UC…try meditation, focus on the good things…it’s tough i know but attitude really is everything even when things are ‘crappy”. hang in there!

  5. Justin
    Justin July 11, 2012 at 8:45 pm #

    Hey scarlett, I feel you on the sense of being alone, I was recently diagnosed as well and lost almost all of my close “friends” because they didn’t like to be around me because of the personality change I went through. Finding out you have a chronic disease is a life changing thing. But I had to force myself to change my mindset. And I also stopped looking up nonsense on the internet it will just bum you out, I just stick to this site now and thanks to everyones advice on here I’ve claimed my sanity back. PeterNZ and bev are a million percent right, don’t let it drag you down. Sure there’s gonna be times that suck but it will get better. And you will still be able to do the things you love like riding horses. I was real into weight lifting but after the diagnosis and hospital visit I was worried I would never be able to do it again for fear of crapping my Colon out during a bench press. But I decided its my life and I’m gonna do what makes me happy and I am back to it even tho I’m in a flare and dosed up to the eyeballs on prednisone. The uc can ruin your life but only of you let it. Best of luck and hope you feel better soon

  6. UC Family Boy
    uc family boy July 12, 2012 at 7:37 am #

    One thing any chronic disease can do to anyone is…make them grow up. If you can understand what it takes to manage it, I feel you will be fine.

    At first we are all amateurs when faced with this, but give it a go – remember amateurs built the Ark, Professionals built the Titanic :S

  7. shannon July 12, 2012 at 8:27 am #

    Hello fellow ucer. I am shannon. 12yrs of ibd. Its been one hell of a ride. An who told you it dosent affect your quality of life? Wrong. But i want to tell you the disease becomes part of you dont let this disease take you over cause it can easily be done. Its not fun with the evilness it can put into our lives. I to can feel myself wanting to crawl in my hole an not wanting to come out of it for months. Nit knly does this disease cause you angrush but it causes so many other mixed emotions. For 1 you need to find that 1 dr wbo wont give hope on you. Luckily we now have so good meds out there that can help us get back into remission. Please dont feel alone. That is the worsrt feeling while going thru these times of flares. I wrote a story on here call”its a lonely disease” please go back an read it. . Dont feel alone cause here on ihaveuc you will find you are not alone. Many of us are here on this earth for a reason an you gotta to feel as if why me? Why am i the blessed one to have this disease.? Well as you know there is no explaination to why we get it,but you got to take the good with the bad an appreciate your remission times. Start to change your life as in eating habits an stress control. I am a mom of 3 kids an went thru a divorce this last few yrs an plus being sick on top of it all. Hospitalized 2xs in a mo . I thought there would never be light at the end of my tunnel. But i slowly was able to start feeling better . I am now saying im half way there to remission. Check out Adams cooking reciepes on here hes a grt person who makes you stay positive. Read lots of information about uc it helps you to stay up on new advancements . Keep a log of foods that may trigger you. Keep active if you can. Oh ya an one of my home remedies is to drink electolytes. Such as gatoraide or poweraide. It helps. Stay away from dairy as you may know. Go easy on your eating . Low resido diets. Soft foods ect. Easy on red meats . Although im a veteran to this disease i still learn something all the time about it. Know you are not alone in this world stay positive an reach out to any of us on this web site. Just to know you have common ground with ppl like us is comforting in its self. An one last thing you said your having a colonosopy on friday you may wanna reconsider not to while in a big flare it can lead to worse symtoms or can be dangerous causing perferations if poked in your wall of the colon. But thats just me hearing from drs what could happen. Your choice. But please let us know how you are keep us updated. An know your not alone. Take care stay positive. Shannon. Read my stories ….on here they may help you in some way as may others may do .

  8. Rosanne
    Rosanne July 12, 2012 at 8:05 pm #

    Hey Scarlett…most likely you are up right now since you are being scoped tomorrow. UC is NOT the end of the world. I had 2 kids already when I was diagnosed…I went on to have another 1 week before my 35th birthday. Who said you need a JPouch?? Everyone doesn’t have surgery! I have had this wretched disease 30 years and been blessed with a great doctor and have not had surgery and as my GI said not very many of his patients have either. I cannot believe without scoping you they know it is UC. How you have gone nearly 20 years without treatment says a lot. If you are that sick and got a promotion, I believe you will not have to step down. When you are under medical treatment you will do even better. Good Luck tomorrow and Good Luck on your promotion!! You will be fine. Let us know how you do tomorrow!!! MY doctor always gives me pictures to keep…show them to your family!!

    • Rosanne
      Rosanne July 12, 2012 at 8:08 pm #

      Oh yeah…one more thing Scarlett…my baby I had at 35 is now 22!!! So…It isn’t the end of the road for you!!! Just the beginning!

  9. Megan July 15, 2012 at 7:38 pm #

    Scarlett,
    The drs will never put you on the steriods for long amounts of time due to the side effects. I understand where you are coming from when you say you dont want to be on medication long term.. Give the meds a go even if its just for a mental rest. The days and months after I come home from the hospital I would wake up every morning alomost crying from joy because I didnt feel tired, depressed or in denial. Its amazing how much this disease affects your mental health, it can be easy to fall into a rut and not have the power to do anything about it. As with the horse riding I dont see how it will affect that, you can pretty much continue life as normal. You control your UC, and not let it control you!!
    Good luck :)

  10. Adrian canadian July 19, 2012 at 10:32 am #

    UC does suck! Been through the blood, diarrhea, pain, cramps, several hospital stays, steroids, several colonoscopies, was down to 128 lbs at my worst, I’m 180 now. The stress of the unknown and the pain of UC can cause you to make some decisions that will effect your life, so try hard to stay focused on getting healthier, face it your fighting for life! It took time for me to find medications and food that work for me, I’ve learned to follow cravings and try new foods. Eventually things got better, my life is totally different now, I appreciate my family and friends way more now, travelled to 11 countries, chased lots of skirts, yes rode horses in new Zealand, all told have spent a total of six and a half months in the southern hemisphere, trip to Italy. I still have flare ups, vomiting diarrhea, they are rare now, been two years now. but now I get myself to the hospital as soon as I can get the strength, being in a small community in rural canada I’m lucky to even have a hospital, yet all the nurses now me and what I need. One of the hardest things I have faced has been seeing friends die that aren’t nearly as sick as I’ve been. Your life has changed! swarbrickfarmsadrian@hotmail.com

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