Ulcerative Colitis Tips


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Just Another Frustrated Girl with UC

Jessica Toronto Ulcerative ColitisIntroduction:

My name is Jessica, I’m 27 years old from Toronto, Canada. I was diagnosed with UC when I was 20 but have been suffering from the symptoms since 17. I have had ups and downs with this disease – an up was a 5 year remission on absolutely no medication. However, this past year I was hospitalized and after months of Prednisone, Imuran and Salofalk I’m in the middle of yet another flare. I’m a generally healthy person, I eat well, exercise regularly and am now just fed up with the up and down roller coaster of feeling like crap. I’m so frustrated with my specialist for always just pushing pills. There has to be other options. The side effects are unbearable. Most recently I was dealing with debilitating arthritis and fatigue and feeling like an 80 year old woman. I want to find a solution where I can enjoy life and just be healthy.

My Symptoms:

Currently I’m suffering from nausea, violent cramps, diarrhea up to 15 times a day with blood and mucus. I can’t keep anything I eat in, low energy & no appetite.

My Story:

Lately my UC has really been affecting my life. Simple things that I enjoy doing I can’t. I love to run and in the past have participated in 5km, 10km and half marathon races. This past weekend I was registered for a 10km run but had to withdraw because I was running to the bathroom every 15 minutes. Spending time with friends and family consists of me laying on the couch lethargic and weak and unable to sit and eat a meal with them. Even something as simple as a short road trip with my husband turned awful, I ended up having to stop on the side of the highway because I couldn’t hold it. My husband and my family are very supportive but I know sometimes they feel helpless not knowing what to do to help. Right now I’m most concerned about how my UC is going to affect starting a family. My husband and I would like to have children in the next few years and I’m terrified that I won’t be healthy enough to carry a baby or th at I might put my baby in harm if I have a flare up or have to take medication. Being a Mom is my biggest dream and I don’t want UC to take that away from me. It would be helpful and encouraging to hear how other UC’ers have gone through this and what their experiences were like starting a family.

In my experience I have found that eating a very strict diet has helped me. I believe what lead to my 5 year remission was cutting wheat, dairy, sugar and red meat. I would love to hear what natural remedies or solutions others have tried/what has worked for them. I’ve looked into SCD but have yet to try it.

Where I’d Like to be in 1 Year:

In a year I’d love to be feeling energetic and just all around healthy. I want to be living an active lifestyle, fit and in shape. I want to get back to running and being in the gym. I want to be able to eat foods that I enjoy and not have to worry about knowing where every public washroom is when I go out.

My Colitis Medications:

Medications I’ve been on/tried: Salofalk, Prednisone, Imuran, and a steroid enema. Specifically from the prednisone I’ve had the huge list of nasty side effects. I have a love/hate relationship with the drug – yes it works but the side effects are just as bad as my UC Symptoms to be honest. Imuran has seemed to work well for me but the long term effects are what worry me, that and having to monitor my blood so carefully. I don’t want to be developing more health issues for the future. I have not had any side effects from Salofalk but I aslo don’t feel that it has done a whole lot for me.

written by Jessica from Toronto

submitted in the Colitis Venting Area




toronto

4 Responses to Just Another Frustrated Girl with UC

  1. Bev May 29, 2012 at 4:20 pm #

    Hi Jessica…a fellow Canadian here…I live in British Columbia, but was born and raised in Toronto.

    Don’t you just hate this stupid disease? Even the fact that’s it’s called a DISEASE. What an ugly word…

    I am off all meds too. I’ve had UC, actually pancolitis now, for 13 years. Every time I get a flare, I am so freakin’ over it! It’s all gotten SO old. I know exactly what you mean. I’m only taking a really good probiotic these days. Most of my symptoms are gone…just a bit of bleeding and that’s it. I’ll live with that!

    I notice you are talking about aching. That is happening to me big time, at the moment. I can barely move sometimes, especially my shoulders. I too, feel like I’m 100 years old. Strange that since I went off all of the asacol that I was on for 13 years, that I now ache like a son of a gun. And, the fatigue that you are talking about! That’s also gotten alot worse. Go figure. I’m off all the rotten meds, and I feel way better, except for my body aching, and extreme tiredness. Oh well. I guess it’s a trade off?

    You take care!

    Bev:)

  2. Laura from Toronto
    Laura May 29, 2012 at 4:52 pm #

    Hi Jessica,
    Also from Toronto. I think the important thing is to keep being proactive about it. I mean, keep eating the things that work and eliminating those that do. Sounds so simple, yet I myself am still trying to find my food safe zone.
    As for exercise, I personally find the distance running always troublesome. I was actually reading an article that said that “normal” people can experience intestinal bleeding from the ground and pound so I can imagine what that might do to our already compromised colon’s. I have found Ashtanga yoga a very replacement. It’s power yoga and is great for keeping toned and fit. An added bonus…the peace of mind after a long hard practice.
    Good luck and feel better.
    Laura

  3. Abe June 8, 2012 at 8:56 am #

    I know how you feel, having got UC myself. The only thing I can recommend is probiotics, probiotics and probiotics. Check out this website http://www.symprove.com/buy-now.php
    And no, I am not affiliated with them or make money from them in any way shape or form. Its expensive, but I just ordered a bottle. I’ll let you know how I get on with it. Feel free to reply back to me either through this website or on AMdistant@aol.com.

    Hope you feel better soon !

  4. Bec June 8, 2012 at 7:00 pm #

    Hi Jessica, I understand how you feel about the frustration of not being able to run due to the UC. I was diagnosed with UC in April 2010 at the age of 23 but my symptoms started in November 2009. I’ve run 3 half marathons (PB 1:31:33) and some 5-10km races in the past 2.5 years but I have to be really flexible with my training program because you never know when a flare is coming or how you are going to feel from day to day. A really big problem for me is the fatigue and weakness (partly from the diarrhoea and partly because I become afraid to eat when the cramps are bad and when it’s so painful going to the toilet). On the 8th May this year I registered for the Melbourne (Australia) half marathon which is on 14th October and then on the 9th May I was in hospital due to a flare up so I haven’t started training yet and have only been for 2 runs in the last month! It sucks and I want to get out there but I’ve learnt in the last few years to listen to my body and accept when I’m not up to it. Initially I tried to fight against the symptoms and make myself commit to my training program and look at it as another challenge that I could overcome, but as you would know, when you have stomach cramps and feel the urge to poo all the time, running is not an activity that you want to be doing. Sometimes I tell myself I’m weak and a slacker for not getting out there, and I feel like a slob when i’m just lying on the couch and sleeping, but when i’m struggling to even walk to the toilet due to the fatigue, I know that i’m not up to going for a 2 hour jog (or even 30 minute jog!) And it’s hard for my boyfriend (who I live with) to understand how I can be so tired or in so much pain constantly (and therefore grumpy and just wanting to stay home on the couch). He tells me not to worry about the future and what might happen with my condition but that’s easy to say when you don’t have the condition yourself. He is very supportive though and we make jokes about my farting and constant running to the toilet, and he tells me that if i’m running in a race and need to do a poo to just do it in my pants and continue running like Paula Radcliffe did (although I don’t think I could ever bring myself to do this!!) It’s definitely a roller coaster having this disease. When I’m feeling good I probably do too much because I feel like I have less time than everyone else because so much of my time is wasted on feeling crap. I tell myself that other people have worse health problems (which are fatal) but at the same time, I still thinks it’s unfair that I got this illness at the age of 23 (and will have it for the rest of my life) when I was fit, ate a very healthy diet, didn’t drink alcohol or smoke or take any drugs (not even Panadol or the mild drugs for headache relief etc- another reason I HATE that the gastro Doctors tell me they can fix UC with drugs which only hide the symptoms not cure anything)and there are so many unhealthy people who are overweight/ obese, or alcoholics or smokers who don’t have a chronic illness. Not that I would wish illness on anyone but it just sucks that I was doing everything in my power to have good health and still ended up with UC. ****Can you tell I’m in the middle of a flare up???**** Anyway, it helps me to know that other people with UC have had the same experiences and worries as me and understand what i’m going through. All the best with your running and your UC! :-)

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