Ulcerative Colitis Tips


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Splitting in Two

Introduction:

My name is Rebecca and I’m 22 years old. I live in Melbourne, Australia and I was diagnosed with colitis last Christmas, around the same time I graduated from University (College). I have a love for novels and hope to complete my own one day.

My Symptoms:

Weight loss, stomach cramps and what has recently become extreme bleeding.

My Story:

I had never heard of the condition until I was diagnosed with it last Christmas. It all started at the beginning of last year when I began to notice spots of blood randomly appearing on the toilet paper. I can’t explain why but I didn’t think anything of it. It wasn’t until a graduation trip to Thailand that it started getting really bad, but as most would, I assumed it was just a case of Thai belly. 2 weeks after returning home, it still hadn’t cleared up and I realised that it had been 4 months since having a “normal” toilet experience. My doctors daughter actually had UC so he sent me to see a specialist immediately and since that visit my life has become… well, nothing like I would of imagined it to be. My life literally revolves around Ulcerative Colitis.

I’ve changed so much from the person I was 8 months ago and it scares me. Bec 8 months ago would get excited about going out for a drink, she’d be writing a list of publishing houses to send her CV to and the only reason she would think twice about eating that choc chip cookie would be the calories. Now, going out for a drink isn’t worth the aftermath and even thinking about my career stresses me out and we can all recognise that’s an enemy. If I try to look at the bright side, I guess due to the fact I loose weight from doing absolutely nothing, I don’t have to worry about calorie intake…but than again, now that same choc chip cookie does a lot more damage than adding some to my backside and I’d take the bigger behind over UC any day. I’m literally beginning to see myself split into two different people. There is the girl trying to fight UC and then there is the girl trying to keep even the slightest normalities of life before UC.

Reading over everything you’d think I was a miserable and negative but I’m not and that is the hardest part. I can’t bring myself to show how hard this is on me and how scared I am of what’s happening. I’ve always been the person my friends and family go to for advice. I’ve always tried to see the bigger picture and have a positive outlook on things and that is how people know me to be. I refuse to let them think I’m not that person anymore and I refuse to let people feel sorry for me. As a result I’ve become the ultimate two face. My friends and family are so supportive but they don’t get it and I don’t think they will ever be able to get it unless they have it themselves. They don’t know how bad it is because I don’t let them know. They know the new medication I’m on or if I’m having a bad day but I don’t let them know how bad it gets or that I’m really worried. I think that is why I’ve dec ided to post this and even if I never come back to this site (which of course I will) but even if I didn’t, I already feel that little bit lighter because I can actually just say it how it is.

I’ve tried multiple medications and none have worked. Until 2 months ago I had refused to take prednisolone but it got to the point where my doctor put his foot down and I’m glad he did because I now know that it was the idea of taking steroids that was the scariest part. Starting on 40 mg and taking salazopyrin (8 per day) I started seeing really good improvement but of course I have to be that percentage that becomes reliant on the roids. As soon as I got down to 25mg I started to waiver. I got hit with a cold and all went down hill from there and now here I am. I’m currently on 30mg of prednisolone, salazopyrin 8 per day and recently 6-MP 75mg per day. The 6-MP doesn’t kick in for 2 months so I’m in the waiting stage. I have no idea if in two months it will work and I’ve been on so many meds that it is hard to feel like “this is going to be the magic one”…

Quickly, poo talk doesn’t faze me but I’m sorry if those reading are fazed by it. I’ve found that tracking them is the only way I’ve become able to read my colitis. Currently any kind of solid stool has become mute, I am literally only passing blood and mucus and I don’t know if I should be scared about it or not. It has become so much of the norm to me I don’t know what is classified to be mild or severe. I’m still walking around doing my day to day things and apart from the fatigue from the 6-MP and the constant cold because of my lack of immune system – I feel fine, I’m just passing blood none stop. Okay, my biggest concern is this – I’ve read a lot about people being crippled from pain and rushed to hospital – I’m not like that. I’ve become so used to living with UC that I can’t tell when I should be worried. Every session with my specialist starts with “how are you feeling?” and my friends and family always ask “how are you feeling?” but I don’t know! I have lost the ability to tell how I’m feeling. Nothing has improved, it has only gotten worse and now I can’t remember what normal is…

I didn’t really have a particular question in mind but just writing about everything feels good, so I’ll leave it with this…

“Anyone can give up, it’s the easiest thing in the world to do.

But to hold it together when everyone else would understand if you fell apart,

that’s true strength.” – Zig Ziglar

Cheers, Bec

Where I’d like to be in 1 year:

At the end of next year I’m planning a year trip around the world with my best friend. Starting in North America, then heading through South America, then across to Europe and ending in Bali. So in 1 year I’d like be in remission and off all medication OR on a steady medication that I know is working and keeping me in remission :) I’d like to be having the best trip and my UC not affecting it.

Colitis Medications:

Not sure about my medication…at the moment the only one I can safely say worked is the prednisolone. I will share a smoothie I have every morning that I believe makes me feel a lot better on the inside and out.

250 ml apple juice
45 ml Aloe Vera Juice
1 tablespoon of Miessence InLivin powder
1 tablespoon of Miessence Green Alkalising powder
1 cup of mixed berries
Banana
Couple of ice cubes

written by Bec

submitted in the colitis venting area




17 Responses to Splitting in Two

  1. Lexie
    Lexie August 5, 2012 at 11:43 am #

    Bec,

    I was just diagnosed with UC, so I’ve only been experiencing the symptoms for a short time, but I just wanted to thank you for your post. Even though it’s only been a short while, I already relate to some of the things you’re feeling and it’s nice to know that I’m not alone.

    Lexie

  2. Steve August 5, 2012 at 9:53 pm #

    Thank you for sharing Bec and nice to meet someone from down under! As long as that smoothie doesn’t have any Vegemite in it, I’ll have some. :)

    Anyway, I totally get how you are feeling. I remember going through the same stuff. The people closest to me? I would hide how hard everything was…to the point that a lot of people thought I was functioning just right. I did not want to show any weakness, even though I know it would not be weakness at all. You seem to have the right attitude so I think you will make it out alright—but does your doctor know about the blood? I guess that is a stupid question…but in my case, some of the medicines I was on was causing bleeding. Just something to think about. And be mindful of that two month waiting period. If it passes with or no results, see what else the doctor wants to do…or if you want to change things up.

    Me? I’m medicine free…like I said, I had bad experiences with them all and I just couldn’t grasp taking meds that made my symptoms worse. I tried the raw diet for a while but due to where I live being quite a ways from lots of organic produce and money concerns, I am now starting the SCD diet and I won’t lie. Aside from being tired today, from checking on my yogurt a lot…my stomach was quite calm today. There was no discomfort like there has been. I have soft stools of course, but no blood or mucus. It was a very easy day and I imagine it will only get better.

    Ps…that trip you are planning sounds awesome!!! Oh, and thanks for sharing your story!! Steve

    • Bev August 7, 2012 at 6:50 am #

      Steve…you are AWESOME!

      You are so kind and supportive and you help many on this website. Thank goodness for people like you!

      How about that Justin, huh? He’s needed moral suppport and you’ve been there for him, as well.

      Cheers, man. You are a gem!!

      Bev:):):)

      • Steve August 7, 2012 at 8:51 am #

        Well, I just got here so I don’t see myself that way but thanks. You help others a lot and have knowledge I certainly do not…especially with alternative medicines to take. :) Sharing our stories/knowledge makes us all some amazing people and this a cool place to visit.

        Honestly, I just like to write and helping people is what I do. If you have the knowledge or experiences why not share it? While I don’t have the long hospital stays or the weight loss some due, and I’ve practically argued with doctors(I thought one was going to hit me and at the time I was feeling a lot like Justin was—in pain and and not well—I would have hit him right back). I’m not a fighter in that since but you know what I mean…doctors are there to help us and a few who come here seem like they need that support. After all, I have yet to meet a GI doc who gets this illness, who looks at lifestyle causes and tackles the root of the problem first…before moving to more drastic measures. When I do, I’ll refer everyone to him or her. haha.

        Thanks for the kind words, you’re quite awesome yourself, and I’m sure we’ll be running into each other! :) Steve

        • Bev August 7, 2012 at 5:25 pm #

          Right on Steve. I get that. I think I just like to try and help as well.

          Yes, we shall meet on here again, surely!!

          Bev

  3. Adrian canadian August 5, 2012 at 10:27 pm #

    That’s a very good quote!
    7 years ago I was in really bad shape with UC, my grandfather was having strokes, grandma had Alzheimer’s. Life plain sucked! The prednisone wasn’t working so the doc put me on a suppository’s that had to be imported into the province for me, it worked perfect, had a colenoscopy on november 2nd, the doc said “I would be very disappinted if you didn’t go to Australia” so by november 22nd was in outback australia working on a potato farm, worked in central Tasmania and even did a ski dive in New Zealand! Was an excellent experiance especially after battling UC. Went nearly five years without much trouble, the UC is slowly coming back, this time with joint pain, beats the vomiting tho. All the fear is back, exhausted all the time! Not much blood yet, have different doctors now, the last doc took out his back the morning I had my last scope scheduled, the prep for the scope sucks! Even worse when the doc calls in sick.
    Find a way to talk to your family, they are the most important asset in your life! Chances are your family can see your struggle and are giving you an opportunity to talk, so talk! My family has been great for me. Depression can be your biggest enemy!

    • Carol from Colorado
      CAROL GEBHART August 7, 2012 at 7:37 am #

      I am having to watch my liver enzymes a lot now. Sometimes they are abnormal and then it goes away. It took me about 6 months for Imuran to kick in. Doctor says it is according to the person when it might kick in. Everyone is different. Anyway I stopped bleeding for 5 months and then started spotting mildly June 13 and then July 30 no bleeding since then. I do have a big problem with abnormal liver count and am concerned with that. I am tested all the time. I don’t like the fact that is happening. Have you had this happen to you. I am going to discuss this with my doctor next week.

      • Steve August 7, 2012 at 9:24 am #

        Hi Carol. How are you? Is your doctor covering everything it could be? Urge him or her to do so to be safe…it is your care and butt on the line after all(no pun intended on the “butt” thing). Hope all goes well next week!

  4. ann August 6, 2012 at 6:35 am #

    Bec,

    I really really feel for you and thanks for sharing your thoughts and stories.

    Ann

  5. Bev August 7, 2012 at 6:47 am #

    Hi Bec…

    I think acting like everything is okay is our coping mechanism. If we completely fall apart…well, what then? Isn’t it amazing how crappy we can feel, and yet still let on that everything is normal? Especially to family and friends. I’ve totally done that and still do that. Just going through the motions of life, every day, even though it’s so hard just getting through the normal daily things!

    It feels sometimes like I’ve been in a dream. I look back over the past 13 years of my life with UC, and can’t really remember alot of it. Yes, you change as a person when you have a disease. Deff-o! I hope that it makes us better people…in the future…lol

    It sure feels difficult, though! We are all with you on this, I know. We’ve all felt this way. We’ve all been there. ‘Split in two’. You are a wonderful writer. I could not have put it better myself! Your whole post was fab! Please keep on visiting this website. You will get ‘happier’ if you do…I promise you that!!

    Cheers,
    Bev:)

    • Steve August 7, 2012 at 9:01 am #

      I’ve never been able to explain that feeling to anyone without UC…where we live our lives and we change and we do everything others do but it all becomes a blur almost. I can remember events but the day to day stuff all runs together. It is nice to see others feel the same thing, even if in the scheme of things it is far less serious than some stuff we go through. :) Have a great day everyone! Steve

  6. Jennifer August 7, 2012 at 9:29 pm #

    Hi, I’m concerned that you’re just passing blood and mucus… can you share what you’re eating? Diet plays such a huge role. Even the seeds in your berries could be a big problem.

    • Steve August 7, 2012 at 10:26 pm #

      Or how you are combining your foods…like raw fruit after eating a heavy meal the night before. Great point about the seeds Jennifer. :) On a similar fruit/veggie possible inflammation note, pesticides are something UCers should try to avoid. Certain fruits are worse than others due to the make up of each fruit/vegetable…but our weakened systems overloaded with pesticides can take something we would otherwise tolerate well and turn us inside out…almost literally. I say that with a sense of humor but blood loss at a high rate can turn serious fast, especially that which is related to diet like seeds, nuts, etc.

  7. Micca August 10, 2012 at 3:34 am #

    Hi Bec,

    I’m from Melbourne as well and have had UC for about 8 years now. Just wondering if you’ve considered going to a specialist clinic? I go to the IBD clinic at the Royal Alfred fairly regularly when I’m not doing too well and they’re great. They have a helpline that you can call at anytime if you have questions or need more prescriptions etc. And it’s good to talk to people who deal with this disease every day.

    If you ever feel like catching up with a fellow UC’er for a chat let me know.

    Good luck,

    Micca

  8. Bec August 10, 2012 at 6:10 pm #

    Thank you so much for all your comments! I didn’t know what to expect posting a story but it was such a nice surprise reading everyone’s responses. Sorry it took a while to respond myself,, ironically I got sent to hospital shortly after writing the story. It is hard to explain but after writing about everything and sending it to steve, I realized my doctor (who is amazing, Micca if you ever need a newbie- Dr Steven Brown. His offices are in east melbourne, near st Vincent’s but I’ll definitely check out the clinic, thanks for that ) i realized he is probably the closest person to have an idea of what I’m going through, I mean he treats 100s of UCers. So I sat down with him and had a huge dnm and it was such a relief. Had another colonoscopy and he is really confident that adding suppositories to my cocktail of meds will be a huge help. So Im feeling hopeful.

    I didn’t even think about the seeds in the berries! The only seeds would be from the strawberries but I’ll remove them and see if anything improves. Thanks so much everyone and I hope you are all doing as well as you can with UC. I can’t express how much it means to be talking to people who are on the same wave length and I hope my post gave anyone reading the same feeling your posts gave me :)

    Steve you really have a good thing going here, thanks so much

    X

  9. Bec August 10, 2012 at 11:10 pm #

    Thanks so much for all your replies! I didn’t know what to expect posting a story and it was a really nice surprise to see how supportive everyone is on this site and it is such a huge relief knowing others are on the same wave length. Sorry for the late reply, ironically I had to go into hospital shortly after I wrote the post. I don’t know how to explain it but writing down everything made me see things a bit clearer and I realised my doctor (who is amazing- Micca if you ever need/want a new specialist, Dr Steven Brown in East Melbourne but I’ll definitely check out the IBD clinic – thanks so much for that) I realised he is probably the closest person I have that understands what I’m going through, I mean he treats 100’s of UCers. So I sat down with him and had a huge dnm about everything and it was biggest relief. I had another colonoscopy while I was in hospital and we found my worst inflammation is at the bottom part of the colon so we’ve added a suppository drug to my cocktail of medications. My doc is really confident this will help so I feel hopeful. Melazine suppository? If there is anything I should be weary of a heads up would be great. i’m still on the other 3 so I doubt I’d even notice side effects anyway!

    I never thought about the seeds in the berries! It would be just the strawberry seeds but I’ll remove them…thanks for that Jennifer. I swear it is so hard to remember the tiniest things can do some damage. I try to keep my diet pretty bland but I am a big foodie so it can be hard. I have the shake in the morning, rice with tuna for lunch usually and then dinner alternates. Mostly rice dishes, veg and chicken. I do have a ritual morning soy latte which many have said to cut out caffeine but I actually can’t do it. It might sound stupid but my morning coffee is something I just can’t give up and I don’t think it does anything…

    I hope my post has helped readers like all of yours have helped me. Adam you really have created an amazing outlet…who knew people from around the world could help each other in such a simple way. Got to love the internet.

    Cheers again everyone, hope you all are as well as you can be.

    x

  10. Bec August 10, 2012 at 11:12 pm #

    p.s my first comment didn’t come up at first! haha so I re-replied. So you get two (now three) responses from me :)

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