Ulcerative Colitis Tips


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Frustrated, In Pain, and Running Out of Toilet Paper

Something About Me:

I love to cook and my dog and long time boyfriend also love that I cook. :)

Current Colitis Symptoms:

I’m currently wincing through cramps and diarrhea

My Story:

It seemed to be under control for a while, but the past few months it has been awful. I work in a flower shop and it requires me to be on my feet all day and interact with customers all day- running to the bathroom every 20 mins and dealing with the pain has been awful. My manager is getting frustrated with me missing work and I don’t know what to do. My boyfriend is hesitant about how serious it is….. Even right now I am trying to figure out how to call work, for the second day in a row, and say I can’t come in.  Should I just send them some literature about UC? Tell them that spending all day in our tiny, old hear everything in the rest of the shop bathroom is not cutting it on my bad days? What do I do? I don’t want to loose my job, but I don’t want to force myself to work through the pain. I’m not good at my job when I’m dealing with a bad day.

I hate my doctor, but he is the only guy I can see in my small town. I think my friends and family are starting to think I’m ‘milking it’ to get attention or to get my way. I hate this invisible disease!!!!!!!!
I feel like an awful person taking time off for myself to heal…..

I would love to hear a ‘gold at the end of the rainbow’ story, that it’s all going to be fine. or what has worked for you, i am very open to holistic treatments.
how do you tell people about UC without being embarrassed to no end? how do i tell my boss i can’t leave the toilet to make it to work?

Please.

Thank you.

Medications:

sulfasalazine, two pills four times a day. it’s all i’ve been prescribed, i don’t like it. I have loratab for the pain, obviously can’t take it when i’m at work. and vitamin d pills. because my body can’t take in vitamins anymore.

submitted in the colitis venting area




13 Responses to Frustrated, In Pain, and Running Out of Toilet Paper

  1. Chris November 18, 2012 at 12:32 pm #

    Your situation does not sound ideal. I too hid it from my bosses until I decided to have surgery 4 weeks ago. I work partly in an office environment and partly out in the field. Both has it’s challenges, especially when I was in the field, as sometimes there are no bathrooms.

    My advice is, especially if you love where you work and what you do, is be honest with your boss. You don’t have to go into the gruesome details of UC. Just enough that they know you have a disease and what it involves. You could even refer them to this website. I did for my family when I told them about my surgery. My wife finds it useful.

    I say tell your boss, but only you will know how receptive they will be to you and providing a reasonable accomodation for UC.

    Sorry about your doctor. There are plenty of RX options out there. Unfortunately, for me, they all stopped working. So, I elected to have j-pouch surgery 4 weeks ago. Plus, I was tired of putting chemicals in my body that may shorten my life b/c of the side efffects.

    Good luck; you are not alone.

  2. joanna November 18, 2012 at 12:34 pm #

    hey good cook, i feel your pain. i couldn’t work at my old jobs- fitness instructor and doctor’s assistant, so i had to quit both of them. it was just impossible to work with constant diarrhea and pain. i wasn’t comfortable going to the bathroom anywhere than my house. it’s embarassing to have people at work waiting for you to come out when you’re in there for 20 minutes writhing in pain.

    you have to do what’s right for you even if that means taking time of work to get in remission.

  3. Jason November 18, 2012 at 1:31 pm #

    I was also diagnosed with UC back in January. Mine started out as Proctitis and unfortunately turned into full blown UC within a few months. After two hospital stays and failing all meds, I opted for j pouch surgery. I also was not planning on taking those meds for any length of time even if they worked. The potential side effects are way too scary. I just had part one of the surgery this past Wednesday and am leaving the hospital tomorrow. Hopefully I’ll be back in two months for the takedown and be done with these disease for ever! So far I am healing very well so It’s looking promising. The first thing I would do if I were you would be to get out of your small town and find a VERY experienced GI doc. The same goes for a surgeon if you choose that route. This is far too serious of a disease to let someone with limited exposure to it be treating you. You need someone who deals with it everyday. Usually Medical colleges are some of the best places to go. And don’t let anyone downplay how bad the symptoms can be, because we all know they are horrible! If someone can’t understand that then point them in the direction of a few UC forums and they will quickly see how bad it is for so many people. Best of luck to you on this journey! I wish you a speedy recovery no matter which treatment you choose.

  4. PeterNZ November 18, 2012 at 2:06 pm #

    40mg of prednisone will help

  5. bev November 18, 2012 at 2:08 pm #

    A good 50+ billion probiotic, faithfully, every morning first thing, with water. Seriously. Give it time…it can take a few weeks to really work. That will replenish the good bacteria in your gut and colon.

    Also, fermented L-glutamine powder to stop the bleeding and heal the mucosa of the colon.

    I have been ‘cured’ for 9 months and am on NO MEDS. I feel like a totally normal, ulcerative colitis FREE person. BTW, I have…or HAD pancolitis…total ulcerated colon.

    Try it…it can’t hurt…

    Cheers:)

    • ANN POTTER November 18, 2012 at 3:09 pm #

      whaT probiotic do u use

  6. bev November 18, 2012 at 4:27 pm #

    Okay, I use ULTIMATE FLORA CRITICAL CARE by RENEWLIFE, however, you don’t have to use that exact one. They may not be available where you live. I do recommend at least a 50 billion strain probiotic, though. Buy at least that. And, you have to take them faithfully, every day, first thing in the am, with water, on an empty stomach. I saw great results in less than a week, but it can take longer than that. Don’t give up too fast. Probiotics almost always come in at least a month supply, so take them all.

    I hope they work for you as well as they have for me. I wish everyone would try them!

    Cheers:)

    • Peter Rye November 19, 2012 at 7:37 am #

      Dear Bev,

      50 Billion does seem a very High amount of Probiotics ! Did you initially start at a lower dose and then gradually increase or go straight onto 50 Billion ? Here in the UK, 10 Billion is the highest strength and the RDI is 1 capsule. Also, when you started the Probiotics were you still taking your UC medication ???

      Best Wishes,

      Peter

      • bev November 19, 2012 at 7:52 am #

        No Peter! I started right out on the 50 billion-er! No problems at all. Maybe my particular probiotic is gentle. I never had any issues with it at all. It worked very quickly for me, as well. Within a week!

        Yes, I was taking asacol (mesalamine) when I started the probiotics. The highest dose allowable! When I look back now, I could have gone off my meds right at the same time, because they were really doing nothing for me…in fact, the high dose that I was on seemed to exacerbate my UC symptoms! I was afraid, though, to go off of the meds. I had been on them 13 years and the doctor had me convinced that I NEEDED to stay on the forever.

        Best thing I ever did, personally, was to get off of them! I stopped them completely one month in to taking the probiotics. I can’t believe all the bad side effects they were causing me…too many to name…acne, nausea, cramping and pain, looseness (you know what I mean), bloating, hair loss, joint pain, dizziness, incredible fatigue…I thought it was the actual UC causing all those things…I feel so good these days…I am so pissed that I wasted 13 years of my life feeling so horrible and I can’t get them back…enough said.

        Cheers:)

  7. Lane November 19, 2012 at 12:46 am #

    I’ve been taking Ultimate Flora for about 3 months now and my symptoms have gone away. Usually I bought the 50 billion strain but the last time I went to buy them at my health food store, they were out so I bought Ultimate Flora with 30 billion strain. Well, so far so good, no symptoms. I take the pill in the morning with water. It took me about 2 months before I saw a change in my symptoms but now I can eat anything and do not have a problem. I want to personally thank Bev again for sharing her information. Everyone is different so you just have to find the probiotic that works for you. There are a lot of them on the market. Happy holidays everyone! :)

    • bev November 19, 2012 at 7:40 am #

      How wonderful is this everybody?

      Again, it’s not me, Lane…it’s the probiotics!!

      Yey!!

  8. Maggie November 19, 2012 at 9:10 am #

    Also try making tea from fresh ginger, jut mince some and put it a tea ball and steep. Bev, I take l-glutamine in a capsule and I’ve known that you use it in powdered form but this is the first time I caught that you use FERMENTED l-glutamine. I’ve never heard of it. I know that certain fermented foods are really good for us. I’ll check it out on the web. Thanks for the info. Good luck “Good Cook”. Also remember diet is very important, especially during a flare!

  9. Debbie November 21, 2012 at 9:54 am #

    Hi Folks, I just wanted to tell you that there is a probiotic that is specifically for ulcerative colitis..(the disease from hell). Its called VSL#3..and it is costly over the counter…but it is covered by some medical insurance. So give your medical insurer a call and see if they cover it..you know, it cant hurt to ask.

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