Ulcerative Colitis Tips


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Colitis Has Taken Away My Life But I AM Still Smiling :)

Introduction:

My name is Shari, I am 20 years old from New South Wales, Australia.  I work part-time at a supermarket, currently on leave because of UC. I have had UC for 7 years now.  The disease has never really bothered me much until 2011 when I had my worst flare ever, still going through hell now but still have a smile on my face :)

Symptoms:

When my bad flare started in April last year, I started going to the toilet abit more than usual. I kept saying to myself, you are not flaring, it’s just one of those 24hour bugs. Unfortunately I just became more ill. I was admitted into hospital because I had stopped eating and drinking, going to the toilet 20+ times with alot of blood/mucus and severe pain everywhere. I became so weak, to the point where I couldn’t walk, I lost 11 kilos and looked like a stick!

Still Smiling:

So my story is kind of long, but I guess everybody’s story is long!, Since being diagnosed and getting past that stage, I have never really had a problem with my Ulcerative Colitis. I could eat whatever I wanted, going to the toilet was always normal. I always felt like I never had anything wrong. Until April 2011, worst flare ever!!

I still wonder what caused me to flare so badly,

everybody always wonders what causes it to happen.

I know before I became ill, I was going out alot and drinking/mixing alot of alcohol. I never handled alcohol to well so I was always sick the next day. I also had the flu a few times and started drinking a diet shake to lose weight. I wonder if all them things mixed together just shook my body badly.

I have seen a few different doctors since this flare, they all say something different!.

The first doctor just said to me straight away:

” nothing is going to work for you so it’s chop chop”,

I told him where to go!

The doctor I see now, she can be a bit forgetful at times, but she has always tried to get my UC in control.

UC has changed my life extremely, mainly the medications have ruined me. I have been on prednisone for 12months, and suffering from every side effect possible. My face is puffy, I have a hump on my back, I have gained 15kilos in weight/fluid in my upper body and back. My hands shake all the time and I have the worst case of stretch marks possible :( . I am currently ill at the moment from coming off prednisone, having prednisone withdrawals so I have been vomiting quite abit. Now back on Hydrocortisone to see if that helps. I have been admitted into hospital 4times since last April, the last admission was when I began Remicade. I have to say it put me into remission in less than 24hours, which kind of scares me a bit. I never thought it was suppose to work so quickly. The sad thing though is I had every side effect possible, my neck and glands/face became that swollen that I couldn’t talk or breathe well. I had ulcers in my mouth, sneezing, coughing, heartburn, everything!

After my 2nd infusion and my doctor seen what I looked like, she cancelled my 3rd infusion. I will see her this Tuesday to start talking about surgery. I am nervous but excited at the same time. I just want this all to be over! I have researched so much about the surgeries and I am prepared for what might happen. The one big thing I worry about with the surgery, is the risks of infertility. I am only 20 and would love to have children someday soon. I think if I had the surgeries and became infertile, it would destroy me. Other than that worry, I just want to be healthy. I have been through alot and still going! I always tell myself, ” I will not let this disease rule me”

The good thing to come out of all of this,

is the support I have had from my family.

My parents and brother have been by my side through everyday, the weeks I spent in hospital, my mum was there. My family has always been very supportive, I don’t know what I would have done without them. Since becoming ill, I have lost alot of friends. People without this disease don’t seem to understand what we go through. It upsets me to know my friends think I am faking it, even if some days I look healthy. I always try to explain things to them but I get nowhere.

I would love to hear from anybody who is planning to have surgery,

or who has had surgery and their experiences through the whole procedure,

the more information and support I have, the better :)

Colitis Medications:

I have been on every medication possible! When first diagnosed in 2006, I started off on Salofalk tablets and prednisone. It took awhile for the salofalk to kick in, but when it did I was great until I started having side effects. I was hearing things,hallucinating and having migraines. So I came off that med and started taking Salofalk granules. 2008 I flared again, back on prednisone, nothing was working so I then started taking 6-mp which worked well. I was good for a few years until 2011, throughout the past 12months I have been on the granules,6-mp,prednisone, hydrocortisone,salofalk enemas,steriod enemas, cycolsporine and finally remicade. I suffered severe side effects from cyclosporine which I was only on for 24hours and also bad side effects from the Remicade. My body just hated everything.

written by Shari

submitted in the Colitis Venting Area




16 Responses to Colitis Has Taken Away My Life But I AM Still Smiling :)

  1. Molly
    Molly March 7, 2012 at 6:49 pm #

    Shari,
    It is good to hear that you can still keep a smile on you facae through this all. It is a tough road, I know I had the Jpouch surgery nearly 3 years ago. If you ever want to talk let me know!
    Molly

    • Shari March 7, 2012 at 9:34 pm #

      Hi, Molly
      It sure is a tough road, a never ending road lol. How did you go with having the surgeries? Alot of people I have talked to, said it was hard to go through but in the end it was worth it. I worry that if I have the surgery and end up having more problems or something going wrong :( the infertility issues worries me the most.

  2. Zach March 8, 2012 at 2:15 am #

    hey shari, im from sydney and have gone through everything you have mentioned. im 24 and have had UC since probably 2005 or so. No medications have worked for me and im over it. I’ve two meetings with surgeons in the last few weeks and am getting closer and closer to getting the surgery. Although i am packing it! Hope it all goes well! Zach

  3. john harmala March 8, 2012 at 4:49 am #

    Shari,

    I have never let ulcerative colitis control my life. For me, the disease is simply a nuisance. After managing my symptoms for over ten years, I am scheduled for surgery in only a few days on March 12th. Despite many sites with stories about ulcerative colitis, I also started my own blog (www.putitbehind.com) believing that my positive perspective could be useful to others.

    After discovering dysplasia, it took me about two years that surgery is my best option. Physically very active, I feared that my quality of life would not improve since I never let my disease become an obstacle. After successfully managing my symptoms for over ten years, I figured that some undiscovered new medication or alternative therapy might exist. Despite my efforts, I have become dependent upon steroids in the last couple of months but this is just an effort to mask the conditions. Deciding to have surgery is a personal decision. For me, it became about cancer because because fighting through the symptoms just requires the right attitude. I think you have the right attitude if you are really still smiling through your battle.

    .

  4. Bev March 8, 2012 at 5:49 pm #

    Hi Shari…

    All I can add is that my body hates all of the meds, too. I refuse to do the steroids. I refuse the remicade and imuran. I have been in a flare sice last winter (more than a year) when I took a horribly strong antibiotic to rid me of pneumonia. Ever since then, my poor colon has been screwed.

    All I am taking now is 12 asacol tablets per day, and lots of strong probiotics. I still have the odd cramping, and only one, very loose daily constitution, and if I can just stay this way, I’ll settle for it. I don’t believe that meds help our condition, they just mask it for awhile. The only true ‘cure’ is surgery, and I have considered that myself. I am alot older than you, at 48 years, but I can see it happening down the road, just because I am so FED UP with this disease.

    Surgery is a huge step, and it is absolutely ludicrous that we even have to consider such drastic-ness…is that a word?!

    I too, keep on smiling, because, if I don’t, what else can I do?

    Cheers, and better health to all of us,
    Bev in Canada:)

  5. Sheila March 8, 2012 at 8:25 pm #

    Hello Shari,
    I had a very similar experience to yours. I had surgery in November (part 2 – a total colectomy). I am starting to feel SO GOOD! I think I had forgotten what “normal” feels like and it feels wonderful. Best of luck to you for a great recovery.
    Sheila

  6. Shari March 9, 2012 at 7:24 pm #

    I think it gets to the point where no medicine will work, there is only so much you can take :/ I know I will not try anymore medicines, never going back on prednisone after what it has done to my body, I look like a monster haha. I am waiting to hear from my GI about my appointment with a surgeon, so hopefully that is soon!. There are so many pros and cons to the surgery, but with knowing there is no other treatment left for me, I may aswell have the surgery before I do flare again or something. You do forget how it feels to be normal, ever since this flare I have never been the same, I think dealing with all of this makes us very strong people :) but I hope one day we can all be free from this disease.

  7. Bronny March 9, 2012 at 11:40 pm #

    Hi Shari

    The diet shakes are definitely a problem and have started my flares. They have an ingredient called inulin and about 50% of the population will get diarrhea from it. Sanitarium Up n Go also uses this (“all the fibre of two weetbix”). A number of brands of yoghurt also use it, so stick to the Jalna brand.

    You might want to look in to the FODMAPS issue with your food intake. Google a dietician called Sue Shepherd from Melbourne. Or the SCD diet which a lot of people on this site swear by. Given that you are considering surgery, it is worth trying a few more things before taking that irreversible step.

    People with UC have a greater than average chance of having irritable bowel syndrome as well as th UC it seems.

    btw, I am from Canberra, so know the Australian brands of food. I studied nutrition at uni, but do not practice as a nutritionist.

  8. Shari March 10, 2012 at 2:31 am #

    Yeah I will never touch the diet replacement meal shakes again lol. I have had a look on here about the different diets you can go on, I worry abit about trying them though as some people have gone into flare just by changing their diet. Everybody is different I guess. I seen my GI the other day and she said to me that I have ibs aswell -.- so really, nothing is ever going to settle down, that’s great your in Australia. The majority of people I talk to are all from America so it can be hard to talk about different products and stuff. Have you tried any of the diets, Bronny?

    • Bronny March 10, 2012 at 10:27 pm #

      I have tried some of the elimination routines for the FODMAPS diet. I think I am sensitive to the inulin, atifical sweeteners and strong coffee from coffee shops in general.

      What I found with the elimination process is that when you are having a flare, you are sensitive to everything and when you are not in a flare, you are not all that sensitive to anything (except for the three above).

      So, I stay away from these three things all the time, because they are easy enough to avoid. The other thing that causes trouble is insoluble fibre such as brown bread. People that don’t know what they are talking about see my white bread and white pasta consumption and suggest that I should eat ‘healthy’ – but they don’t know what they are talking about!

      • Shari March 11, 2012 at 1:26 am #

        That’s true, Bronny. I can’t eat or drink anything when I am flaring. Just smelling food made me run to the loo lol. I think that’s why I end up in hospital everytime -.- When not flaring, I can pretty much eat whatever I want, there is only afew things I have to avoid. Uh I hate talking to people that don’t have this disease, nobody understands anything!, I have lost pretty much all of my friends because they don’t understand what I have been going through, they think I am faking being ill, so I stopped bothering with them. Plus half my friends don’t even know what a colon is :/ sad isn’t it lol we are like some time of Alien creatures to other people.

  9. Torie
    Torie Walsh March 10, 2012 at 4:09 pm #

    Hi , I’m from the gold coast. I flaired for 17 months = blood, mucas, pain you wanta die from, 40 bowel motions a day (I learnt to sleep on the loo) and of course hospitals,Drs,meds and natural therapy.
    I had a flair this week for a few days (just recovering now) for the first time since remission last may.
    I take 1-2 teaspoons of glutamine a day when I’m not flaring.6 a day when in a flair. (it’s a natural anti- inflammatory) I also take polybac 8 (probiotics) 1 teaspoon a day (more in a flair) and of course an array of supplements to keep me healthy and strong including hydrochloric acid to digest everything.
    BUT… what put me in remission was DHEA a hormone that regulated my immune system. Hormones and immunity are closely linked or even the same. Take for instance vit D , which isn’t a vitamin but a naturally accuring hormone that builds (not boosts) your immunity.
    DHEA was prescribed by my Dr amazingly! (Google Karen Coats Xtra health and wellness clinic here on the Goldy.)
    And it only took a few days to start working but 5 weeks to be told I was in remission.
    I did have to go off DHEA for a couple of months as it was a very strong hormone, but I went on a gentler one called pregnenolone. These hormones are naturally accuring in the body but sometimes our adrenal function stops them being made in the amounts we need. Call me if needed . Torie …
    motherduck66@hotmail.com

  10. Vicky March 11, 2012 at 7:07 pm #

    Hi Shari
    I’m pretty much in the same boat as you are. I am 28 and have been on a lot of medications since my diagnosis. I have been trying to get the same flare under control for over 2 years now. I have been on stupid prednisone pretty much the whole time. Remicade failed me and I am currently giving myself Humira injections every other week- which is not doing the trick. I met with a surgeon in December to talk about surgery seeing as how the Humira would pretty much be my last option. I have been trying to come off the steroids as slowly as possible, the side effects are awful. The worst for me is the joint pain, the puffy face and ankles and the extreme hair loss…and who knows which meds are causing what. UGH! I plan on calling and scheduling the first of 2 surgeries hoping to go with a Jpouch. I keep putting it off because it’s so scary. So reading your story and others like it make me feel a little more at ease about it and I know I’m not the only one who has to make such a hard decision. Good luck and I wish you all the best! Feel free to email me if you want to talk more. vickyetter@gmail.com

  11. Joseph
    Joseph March 17, 2012 at 1:36 am #

    I’m actually meeting with a surgeon soon. The meds are not effective enough for me. Too many side effects. Surgery is seemingly becoming more and more popular now than even 5 years ago. I just submitted my bio on here, just waiting on it to get put up. Good Luck with your surgery; it will be great!

    • Joseph
      Joseph March 17, 2012 at 1:39 am #

      I meant to add my Dr has been trying to get me to go for the surgey for a while now, but I wanted to try everything else first. Now its time, especiaslly with all the side effects of the meds. :-\

      • Shari March 20, 2012 at 2:40 am #

        Hey Joseph
        I know how you feel with the meds! waaay to many side effects. I have feet and legs like an elephant right now haha. I am meeting up with my surgeon again tomorrow to start planning things, so hopefully surgery will start next month :)

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