Finally Telling My Story


20yo/F from Australia. Diagnosed at 14 with pancolitis after a year of symptoms, later diagnosed with sclerosing cholangitis as well. Pretty much tried every med and on the road to surgery.

My Symptoms:

Approx 15 bm’s per day
No blood
Cramps, pain
Appetite varies between not wanting to eat anything and wanting to eat everything in site
Myriad of general aches and pains

My Story:

I was first diagnosed when I was 14 after being rushed to the emergency room by my parents. I’d been having frequent bloody toilet trips for about a year, but being only 13 I was afraid to tell anyone.I reasoned that because my period had stopped, the blood had to come out somewhere and I was lucky for not having to deal with periods. I knew it was illogical but I didn’t want to admit I was sick, I was in total denial.
For months prior to being diagnosed I had started missing a lot of school. I’d get half way to the bus stop and have to run home to poop or puke. My parents refused to believe I was sick because by midday I’d be relatively fine.
It had got so bad that I couldn’t even make it up a flight of stairs without stopping to sit down. Walking between classes was like running a marathon. I couldn’t even go shopping, if have to sit down on the floor at every opportunity.

The saving moment came when I woke up one Saturday with a headache so bad it had me in tears. I was a tough tomboy who never cried over anything. I couldn’t stop vomiting. I was slurring all my words and getting frustrated. I’d try to say yes and a completely different word would come out. When we arrived at the hospital I stood up to walk in and collapsed on the car park ground. I only remember bits and pieces of that day in broken recollections. Getting out of the car, being on the ground suddenly, sitting inside in a wheelchair. I remember the triage nurse asking me questions and having no idea what she was saying. The worst part of the day was having a finger shoved up my butt. What kind of 14 year old is going to let you do that without a fight? Even though I could barely stand I still kicked up a fuss over changing into a buttless gown, probably the thing I remember most vividly.

I was later told I had 3 or 4 blood infusions that day and was close to being in a coma from the blood loss.

Since then I’ve had different drugs flung non stop at me.
I started with Prednisolone like most people and at my first specialists appointment was prescribed mesalazine granules. I don’t remember how long they worked for, but eventually I was admitted to hospital again because it had built up to toxic levels in my body, I had waste coming out of every orifice. They didn’t believe it was causing the crazy pooping and puking and had me continue it at the hospital where it caused me to poop so violently I couldn’t even make it to the toilet that was mere metres away. After crapping myself at least 4 times in an hour they finally believed me.

Since then I’ve tried Azathioprine, Infliximab, methotrexate, olsalazine, mercaptopurine and sirolimus. The ones that actually worked were causing liver problems and had to be discontinued. Others just didn’t work, and one messed with my bone marrow or something.

At the moment the only option left is surgery. At the start of all this I was completely against the idea of ever having surgery, but at this point I’ve given up faith that drugs will work. I’ve had years to get used to the thought of surgery but it still terrifies me. Before they can start surgery I need to lose weight, being on steroids almost the whole 6 years hasn’t helped. I was always bigger, except when I was horribly sick, but now I’m about double the healthy weight I should be. At 5 ft my aim is to get between 50 and 60kg.
I haven’t been putting much effort into losing weight because I’m really worried about surgery. Thankfully I have a supportive boyfriend who understands but living 4 hours away definitely makes it difficult.

Where I’d like to be in 1 year:

Every year I think “Hopefully this or that drug will have taken affect and I’ll be well by Christmas” but it’s never the case. Ideally in one year I’d like a cure, but we know that’s not going to happen. Realistically, I’d like to have at least lost a decent amount of weight and possibly have had the first surgery.

written by 20 Year Old

submitted in the colitis venting area

8 thoughts on “Finally Telling My Story”

  1. Hi 20…I hope this message finds you surviving and maybe with a smile, although I can understand if the latter is hard to come by. If it is any solace, you’re not going to lose this fight and it will improve with time(I know that sounds rather asinine of me to say because it has been 6 years already but it will). Just keep fighting the fight.

    My advice? You seem reluctant to get any surgery but there are others here who have gotten them who might offer you support/information. I would look into that and gain all the knowledge you can. Ask anything you can think of, no matter how silly it seems…after all, that is what this place is for. Then, maybe you’ll feel better about the surgery path.

    If I were you…and please take this with a grain of salt if you feel like it…I won’t be offended. You won’t be the first person to think I’m nuts nor will you be the last. If I were you, I would research the raw vegan lifestyle or eating 80/10/10…I would buy Dave Klein’s “Self Healing Colitis and Crohn’s” and I would start that plan as soon as possible. I know natural remedies are not for everyone so you may be against the idea, but at this point, what do you have to lose? All medicines are exhausted, surgery is next…but surgery does not have to be the end all be all. Dave came back from the brink like that so you may want to give it a look. I’ve had the pleasure of talking to him and the man is full of knowledge and wisdom I wish I had.

    Why do I suggest the raw vegan plan over supplements and SCD? Because you’re in a dire position and that plan is very basic scientifically. It will give you everything you need and avoid all the things you do not…with a great upside to healing if you put in the time. Supplements and SCD can work as well, but sometimes not as quickly for various reasons. Any option is worth a look at this point, yes? Whatever you decide to do, please do not give up hope and research all possible options. You may find that surgery is not as scary as you think from people who go through it and have lived a life after surgery…or you might check out a book and get back control through taking care of yourself in a natural way.

    I do apologize that I cannot say more…I feel it would be wrong to do so because I am not in your position facing surgery and you are the one who has to decide what is best for you. I hope you understand. I have had horrible experiences with doctors and with the medications which has led me down a path of constantly trying to learn about natural remedies though so I hope this helps in someway and I’ll happy to offer support if you have any questions.

    Thank you again for sharing your story and keep the hope. Steve

  2. Hi 20 Year Old,

    Wow. You HAVE tried every drug out there! I am starting to believe that these harsh drugs may actually make things worse. I know that I felt alot worse when I was on mesalamine (asacol). Everything I ate, when I actually felt like eating, just went right through me, and I was so freaking nauseated all the time. No appetite at all. So tired. It was like hardly living at all.

    Have you tried a good probiotic for at least two months? It takes time to repopulate your good bacteria, especially if your colon is in raw rough shape. I think people try them, and decide to quickly that they aren’t helping, and bail out too soon. Before surgery, maybe just give them a try? And, if your liver and kidneys are okay, add some L-glutamine to heal the ulcers in your colon. Also, astaxanthin is a natural anti-inflammatory…and UC is apparenty an inflammatory thing…I take these three things daily and am in complete remission. No medical drugs at all. I also have pancolitis…but it seems to have disappeared since I’ve been on these three things!

    Just a thought:)

  3. I’m also a UC sufferer in Australia – I’m in Sydney, whereabouts are you? I have a great doctor if you need a referral to someone.

  4. My daughter struggled through her fall semester of her second year of college. She had so much joint pain and fatigue- just going from class to class wiped her out. She was on 6 MP, Remicade, Colazal, and Prednisone, probiotics, Zofran.She tried the SCD diet, but she’s too picky of an eater. She couldn’t get off the Prednisone. When she tapered down to 15 to 20 mg, the bloody diarrhea, vomiting, etc. would rage again. Being on steriods for a year had taken a toll on her body. The only option was surgery. She took off the spring semester of college, and January she had a colectomy with ileostomy. Even while recovering from surgery she felt so, so much better. She didn’t even mind wearing an ostomy bag because she felt so very good. In May she has surgery to constuct and attach a jpouch. She feels so wonderful. She has so much engery, she doesn’t know what to do with herself. She’s been playing tennis and bike riding. She takes NO medication. She is looking forward to going back to school soon. I wish you all the best.

  5. thanks everyone for taking the time to respond. I’ll be having the surgery in about a week, a colectomy with an ileostomy so that I can decide later on whether I keep the bag or get the jpouch. Definitely nervous, but excited thatthis will be my last week of rushed toilet trips :-)

  6. I wish you the best of luck. You will be amazed how much better your will feel. You will feel like you got your life back! A good ostomy nurse can give you lots of hints and advice. It will take a couple days to get the hang of using the bag, then it will be easy!

  7. I had the surgery on the 10th, everything went well. They were able to do it keyhole rather than hacking me open, which was a huge relief. They weren’t sure whether they would be able to due to my size. I spent a week in hospital, recovering pretty well at the moment. No issues so far, fingers crossed for the future. However, if anyone comes past this who has had the surgery, I’d really like to know if they were still passing mucus stuff after the surgery. I was told this does occur, but I’m experiencing it most days. How often did it happen for other people?

  8. Hi 20 year old,

    I am just curious as another 20-year-old, have you ever changed anything about your diet during this period? I am not referring to loosing weight or anything of the kind, but to like the elimination of certain foods to ease the pain/send symptoms into remission?

    Currently I am kind of obsessed with finding the one things that will help me heal, all through food, as I refuse to take any medication. At this point I can afford not to as my ulcer is of minimum size and does not generally affect me that much apart from rushed toilet visits and cramps.

    It would help me to find out whether people taking medication have actually changed their diet.

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