Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

And Life Goes On

Intro:

Im Mary-Ann! Ive been diagnosed with colitis for a little over a year and a half now. I am 24 and work as a Makeup artist and Nail artist.
Mary Ann
My Symptoms:
Lost and cramping and joint pain. Extreme exhaustion. Loosing hair. Bleeding of course.

My Story:

Just wondering how other people who are still in the work environment deal with working during a flare up. Also being only 24 I feel like people don’t believe or really understand what exactly i deal with on a daily basis. I haven’t dated anyone in i would say 2 years. It almost doesn’t seem like it would be fair to the other person. Yet my biggest wish is to be a mom but now that task seems horribly daunting. Just wondering about other peoples experiences. I go to specialist and OHSU in Portland, or and they seem to have a couple good options to try before going for remicade. Has anyone been on humira for it? They presented that as an option but the gi doc i was seeing before said that they didn’t use that for colitis yet just Crohns. Its hard to know what is right when different docs have conflicting opinions. My family has been great. I live with my mom right now and i honestly don’t know what I would do if i didn’t. I cant work enough hours to keep up the rent and lifestyle i had before getting sick. I’m also kind of grieving the loss of my former life. I have amazing friends and i think lately they think I’m being lazy or flaking out on them. It feels a little pathetic to be 24 and going to sleep at 9 on a Friday night. Me and alcohol are not friends anymore which is fine i was never a huge drinker to begin with. But i did enjoy a nice cocktail or glass of wine with dinner. Coffee is another no go which is said cause being in the NW that is kind of what we do! We drink coffee!! Its all such an adjustment to how it was id say 2 years ago when i was living that fun 20 something life.

Where I’d Like to be in 1 year:

in the bathroom once or twice a day! living my makeup career dream
Colitis Medications I’m Using:
on lialda and azathioprine

written by Mary-Ann

Submitted in the colitis venting area



hairloss

18 Responses to And Life Goes On

  1. Paul Willoughby June 17, 2012 at 9:28 am #

    I’m not sure they’ve FDA has approved humira for colitis yet – but that doesn’t mean it won’t work. I’ve been on remicade for 5 years with decent results – although it’s not the silver bullet I’d hoped for. It is a very expensive option. Not sure about the cost of humira. Good luck – best wishes.

    Paul

    • Per Vork June 17, 2012 at 11:36 am #

      Hi Paul

      Remicade is actually alot cheaper then Humira, Humira is really expensive, especially the startup period.

  2. Heather
    Heather Christiansen June 17, 2012 at 10:46 am #

    Mary Ann
    I recently started Humeria for Colitis/Crohns about 2 months ago and I have seen improvement. They say it take 3 months to get the true effects from the medication to know if it is right for you. I went from 6-10 bathroom stops a day down to 3ish but still having the urgent issue which I am not sure ever goes away. I was diagnosed a year ago but seem to be in denial waking up everyday thinking this is the day it will all disappear (wishful thinking). I have a HUGE hair loss thing going on right now and I am unsure if its the Balasalazide or the Humira although my doc says its just my body being sick for so long it is a natural reaction to loose your hair.
    Good luck I know it is tough since I too deal with it all. I have found a glass a wine every now and again isnt so bad it is almost relaxing to the gut but I have not been able to drink coffee. I am scared to see what that might lead too.
    Hang in there..
    Heather

  3. Per Vork June 17, 2012 at 11:58 am #

    Mary Ann

    I have been living with Colitis for about 10 years now, and i have never been in remission, i have pretty much tried all the medicin there is for Colitis, these are just some of them, Remicade, Asacol, Asacol HD, Lialda, Humira, i have had really bad flare ups that made me go to the restroom like 40+ times a day and i kid you not, but also times where i have been going as low as 2-4 times a day. My last GI visit i told my Doctor that im sick and tired of this disease, im sick of it controlling me and keeping me a prison in my own home, so we both decided that we would give Remicade 1 last chance and if it still isnt working, then we could consider removing my Colon and have a J-Pouch installed, i have been reading up on the J-Pouch and how it has changed peoples lives, and i think it is the journey to go for people who have colitis and cant get it under control.

    Attitude, Well Being, Happyness, Stress is a huge factor for Colitis, you say you havent dated anyone for almost 2 years, it might not be such a bad idea to try it, find someone who you can love and be happy with could change your life, i know it did for me, im originally from Denmark, i married an amazing US woman and moved to the US and since then, my Colitis have been alot better, not in Remission, but alot better.

    I hope you will get better and that your Colitis will go into remission.

  4. Jason June 17, 2012 at 12:24 pm #

    I know its a heated topic, but in my opinion and experience, diet is huge. I personally follow the paleo diet and its great. It’s really amazing how the food you eat affects your body. A lot of people don’t realize it. And doctors also immediately dismiss the idea of diet so they can keep throwing meds at you. There are a ton of people that have totally got third symptoms under control with diet. You just have to be strict with it and give it a decent amount of time to work. If you haven’t already, I would try diet before all the meds.

    • Michelle June 17, 2012 at 12:54 pm #

      Where can I find information on the Paleo diet?

  5. Michelle June 17, 2012 at 12:53 pm #

    Sorry to hear your struggling. I had a very bad case diagnosed right after my son was born. I was 28. They tried everything that “should” take care of it, but nothing worked. Until I tried Humira. It is expensive, but they have an assistance plan which makes your co-pay $5/month. They still run it through insurance to see what insurance will pay, but only charge you the $5, although mine may have gone up. I’m really glad I went with that option. It’s been frustrating at times, as in the beginning it made me very tired after each injection. But, when I started the first dose, I stopped having all symptoms within 24 hours. It was a miracle for me.

    Work is tough. I worked for a small company that just fired me because I was missing too much work. They are under 15 employees so the “rules” that should protect us, as this is a disability we live with, protect them instead because the company is so small. Now I’m working at home, getting my son ready to start 4K. Wow, how time flies.

    I’m currently in remission, and have been since January of this year. Hoping to wean off the meds by changing my diet and lifestyle. good Luck!

  6. Bev June 17, 2012 at 1:28 pm #

    Hi Mary-Ann,

    What a gorgeous girl you are! Lovely photo.

    I’m curious, as I am with everyone with UC, did you take any antibiotics in your life before being diagnosed? I did, when I was little, and had bad toinsils. The doctiors gave me lots of antibiotic injections. Then, in my 20s, I took accutane a couple of times for acne. Bad move, as it causes UC in alot of people. I’m sure that it did in me, along with all the antibiotics I took during my life so far.

    Anyway, I tell everyone with UC this…please take a good probiotic along with whatever meds you are on. A good one is usually only one capsule per day. Just go into the vitamin store in Portland, tell the clerk what you have, and which probiotic you should use. They normally cost about $40 per month, so not too expensive. Give them time to work…usually at least two months. Then, take them forever! Whether you stay on meds or not, the probiotic will help immensely.

    Cheers,
    Bev:)

  7. Maggie June 17, 2012 at 2:05 pm #

    Hi, Mary-Ann. What a beautiful photo. I, too, live in the NW, close to Portland. I work as a housekeeper in the Mt. Tabor area, just have a few clients and because I work in houses, I’m always close to a bathroom. I’ve had a flare for quite awhile and am just starting to get better. I take a lot of supplements and also probiotics. It’s been taking me a few weeks to heal, watching what I eat, it’s a challenge that I’ve embraced because, well, I have no choice, but I’ve learned to really appreciate the foods I can eat. I miss coffee but drink herbal teas now and looking forward to drinking green tea when I feel the coast is clear. I’ve always been a basic vegetarian, no red meat, I love seafood but eat much of it, I should for protein. The only medicine I take is methotrexate, also for arthritis. I went on Humira for about 2 years, it helped my colitis but I started having wierd MS type symptoms. Losing hair is a side effect. Remicade really helped me but I couldn’t afford the co-pays. I have problems with prednisone so just as soon not take it. Good luck to you.

  8. Mary-Ann
    Mary-Ann June 17, 2012 at 2:15 pm #

    Thank you everyone for your responses! It really does help to hear from other people who are goin through similar things. I do take a probiotic and have been for a year and I can say I do notice a difference on it. Also my body doesn’t respond so well to solid foods at the moment so im trying to stick to liquids with getting my protein and vitamins in. I was sick a lot as a kid but auto immune diseases seem to run in my family. My grandpa and two brothers have ancilosing spondylitis which I guess also stems from the same hlab27 gene that colitis comes from. Also my aunt just passed away she had crohns and milo displasia which turned into leukemia so my family has a lot of stuff stacked against us. I have two very supportive dachshund babies who help me a lot of days. I Definetly believe in animal therapy!

    • Bev June 17, 2012 at 6:02 pm #

      That explains alot. Some of your family members have associated diseases. That is really too bad.

      Funny you say you have dachshunds…I grew up with dachshunds my whole cildhood! They are the greatest little characters ever. So loyal and sweet. I’ll bet ‘wiener dog’ therapy helps alot!

      Cheers:)

  9. trent June 17, 2012 at 4:46 pm #

    hey mary ann seeing as you live in portland you should check this procedure out. Its called a fecal transplantation and though it sounds pretty grose there has been great success with it in australia and its starting to become more familiarized in the states. Im actually going to portland on the 8-18th to try this treatment and ive talked to a couple people who have gone through it and they said its been more efective than any other drug theyve been on for their uc. Heres the website for the procedure… http://fecalmicrobiotatransplantation.com/FMT/home.html Im tired of going through different cycles of drugs and being told by my GI that medication is the only way to help my UC. Ive done alot of research about this treatment and have found more and more articles and videos about it in well known magazines like TIME and Scientific American. Heres a video explaining how the treatment is done…http://www.huffingtonpost.com/2012/04/06/fecal-transplant-canada_n_1407627.html Best of luck to you.

  10. Phyllis Bovaird June 17, 2012 at 5:43 pm #

    You might want to start taking Biotin supplement for skin, hair, and nails. It is not expensive and I have been taking it for the past few years. I really think it helps you keep your hair. I just buy mine at the drugstore or Walmart. It may take a few months before you notice a difference in the hair loss. I sincerely hope it works for you.

  11. JamieIsLame
    JamieIsLame June 17, 2012 at 8:49 pm #

    you might want to think about Remicade infusions.
    I know it seems daunting, I didn’t want to start them.
    I soon realised I had no alternative, steroids weren’t working so I couldn’t be put on azathioprine, so I started them about 3 months ago and haven’t looked back! at the moment i’m in nearly complete remission! 99% better, no bleeding and only heading to the toilet once a day (from 15 at the last flare and 30-40 from the one before that).
    I do still suffer from urgency and loose stools, but that’s something you can put up with i’m sure!

    my GI suggested it would work a lot better than Humira, which I wanted to try. He also warned that Humira is very, very painful. some people say it feels like a shot of lava under your skin.

    the 2 hours in the infusion room fly by! honestly.

  12. Heather
    Heather Christiansen June 17, 2012 at 9:12 pm #

    JamieIsLame thanks for that post. I am so thankful that I am at just a few bathroom trips a day but was wondering does the urgency and loose stools ever go away and I think you answered that question. I think maybe Humira is helping me more than I realize seeing that Remicade was my next step if it didnt work out. Really the injections are not so bad you get used to them and its just every other week. My other big question is on Remicade can you eat whatever you want because I do have to watch my diet pretty close still.
    Heather

  13. jayd June 19, 2012 at 3:55 pm #

    I’ve never posted on her before, but I can relate.
    I’m 23, and for the last few months I’ve had a huge flare up without yet being diagnosed with colitis. I used to go out with people for whole days, walking around, partying, drinking and eating. And over the last few months, all of that has come to a huge halt, and after some REALLY embarrassing experiences I now hate going out with people for longer than a couple hours. The worst part is a few people have noticed that I go to the bathroom a lot, and I’m not all that comfortable telling people. However, when you gotta go, you gotta go. I just make sure not to eat too much before I go out, avoiding any of the obvious problem foods like dairy or anything remotely fibrous. As well, I just try not to eat too much, or drink much while I go out. Despite all that, my friends, while really curious, seem pretty cool about me taking a lot more quick bathroom stops than usual.

  14. Justin
    Justin June 30, 2012 at 11:55 pm #

    Hey Mary Ann, did you end up taking some time off of work? I too am considering it. I just hope my company works with me they were a little upset when I missed two weeks because of the hospitalization. I feel you on having to kind of leave the social life behind. I too am usually in bed by 9 and don’t go out anymore. I’m living with my dad now, he’s 69 and he’s up. Later then me and has more energy lol. It just sucks how draining this all is. I was sticking to afairly liquid diet for awhile too, just soup and lots of ensure and boost high protien. Just recently started eating solids again. I hope things start getting better soon for you!

  15. Zelma Lopez December 21, 2014 at 4:29 pm #

    I don’t know if this goes here. I have had UC since May 14, diagonsd in Aug 14. Im taking prednison and pentasa. Over the past few days i have have sever hand cramping (mostly in my pointer and thumb) I’ve had cramping in my ankles an feet since Aug. Standing up for a few minutes fixes that, but my hands are making me crazy!
    Does anyone have this? Is it a side effect of prednisone or pentasa?
    Thanks from a new UCer
    Zelma Lopez

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