Sick, Lonely and Unemployed

Sanne Holland Colitis

That’s me at the zoo!

Meet Sanne:

I’m 26 years old and I live in Holland with my boyfriend and 3 year old daughter. I’m currently unemployed (caused by UC grrrrr). Colitis is giving me a very hard time.

Some more about me:

I absolutely loooove music, it’s my life, really. Especially singing. I also love cooking and baking with my daughter, taking her to the swimming pool, having dinner with friends. I’m a real family girl. I am from Holland and I live in Leiden, I really hope to get in touch with the other dutchies on this website, if there are any? …

Colitis Symptoms Right Now:

I was diagnosed with UC in 2008, but have had some symptoms since 2004. My major flare-ups were always caused by bacteria, like salmonella. Current symptoms:
– bleeding
– anemia
– gas
– mucus
– fatigue

Sick Lonely and Unemployed

I’m writing this, because I’m tired of the ‘silent suffering’ that is so often the case with this disease. Thank God for this website, because knowing you’re not alone makes a huge difference when you’re feeling so sick.

I’m very anemic right now because of all the blood loss I’ve suffered over the past few months. I’m in the middle of a flare-up that was triggered by salmonella this time. Luckily that has now left my body, but the damage had already been done: major flare-up! I’m having a colonoscopy next week, with anesthetics and pain relief, I’m glad.

The worst thing about being sick, is that I can’t do anything fun with my daughter, because I have to stay in the house for… well, you know.

Things got even worse when I lost my job, because I was on sick leave. No new contract. How am I gonna explain that when applying for a new job? “Why did you not get a new contract at your previous job?” Well… should I lie? This has actually happened to me before, a few years ago. I really really really don’t want this to become a vicious cycle, so I desperately want to get better.
I’ve started the SCD diet a few days ago, and it seems to improve things already. Less cramps, fewer trips to the bathroom. I hope this will keep getting better.

I’m quite lonely right now, colitis has not been good to my social life, because I’m so home bound. People don’t understand because you don’t look sick on the outside. They sometimes understand when you explain your symptoms in every detail, but that is something I hate doing. Who wants to have a nice chat with someone about poop? About really bad, slimy, bloody poop?

I’m very thankful for my mother, she is always a bit worried about me, and often suggests I lie down or just rest and do nothing. I never realize that is exactly what I need, until she tells me. I guess she knows me well!

I’m really afraid of any kind of operation I might have to undergo in the future. My doctor said that because of my first flare-up being so bad (pancolitis), the J-pouch was something that was probably in my future. I hate thinking about it. It’s been years since I was diagnosed, but for the first time, I don’t want to accept that I am sick. That I can’t work full time. That I have to ‘take it easy’. I wanna be young and energetic like everybody else! I want to have another baby, but am too sick right now to have a save pregnancy. I really hate this! My house is a mess all the time, because I’m too tired to tidy up and clean. My mother-in-law actually gives me a hard time over this sometimes. Mean!

I have to say, typing this is quite therapeutic.

Colitis Medications:

My medication right now is mesalazine, 6 grams a day, 4 oral and 2 rectal. This has worked very well for me in the past, and at that time I was on an even lower dosage. Right now it doesn’t work that well anymore, though when I stop taking it (I have tried that… stupid) I go to the toilet 20 times a day, instead of the 6 times now.

I have had prednisone as well, but that was absolutely horrible. Constant heart palpitations and insomnia. I called my doctor up and I was really hysterical, and luckily I was allowed to wean off of those awful pills.

written by Sanne

submitted in the colitis venting area




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Holland

10 Responses to Sick, Lonely and Unemployed

  1. Chris from Massachusetts January 14, 2013 at 9:35 am #

    Hi Sanne –

    Thanks for your story, Flares always made me soooooooo Weak! so that I could not even go to work as well.

    My advice would be to go pretty much carnivore w/ lactose free dairy. Then gradually work yourself onto other SCD approved foods. That way you always have a base to got back to in case you have a flare. If you get constipated – it does happen – just give yourself a warm salt water enema. Also look up Gary Taubes, he did a lot of research on an all meat diet and helped me a lot not to be so afraid of consuming so much meat =)

    hope this helps =)

    Chris

  2. Chris from Massachusetts January 14, 2013 at 9:36 am #

    Also it will help with your anemia.

  3. Maggie January 14, 2013 at 2:50 pm #

    Hi, Sanne. Beautiful picture. Yes, colitis does make things difficult for us. I was anemeic also and am still taking iron supplements but will stop when they run out. I was in a flare for 9 months and got over it in Sept. I still take supplements to help, like probiotics, glutamine, and even fiber in my morning smoothie. Stick with the scd diet, stay away from caffene, even green tea until you get better, then no coffee, ever. Some people can tolerate a little wine if not in a flare, I can, but I hardly ever drink, but I do have some green tea. I hope you meet some people from your area. Best of luck to you!

  4. Jane January 14, 2013 at 6:24 pm #

    Hoi Sanne, ik ben oorspronkelijk ook uit NL.
    anyway, they have Zyflamend in Holland too, get the LIQUID if you can and you can NOT OD on this,so while in a flare up three times the recommended dose is no big deal, (its kept me alive) also get on Olive Oil (read Grahams story)
    and from what i understand they DO FECAL TRANSPLANTS (FMT) IN HOLLAND already so find someone who does asap, as i truly believe it will help most UC sufferers. II’m working on it here but its not covered by insurance and I have no family here (all in Holland) and its difficult to ask a friend. So i may go to the Oregon Dr. Davis once I saved up for it. Mostly meat and fish diet and non sugary stuff is what most people do well on (though i eat everything as Zyflamend keeps me afloat)
    Anyway, Gelukkig Nieuwjaar! & best of luck!!!

    • rt January 14, 2013 at 8:14 pm #

      google fecal transplant and ulcerative colitis. interesting blog where you can do it yourself at home. some seen awesome results. in fact, I am going to try it before I start with any meds just to see how it goes. also current study starting in Canada on it. previous studies very small pool, two to be exact but both went into major remission. the home version is cheaper and I suggest we all give a shot if u can stomach it.

  5. joanna January 14, 2013 at 7:17 pm #

    hey sanne. i know how you feel. i am flaring, too, and am so anemic. i just have no energy for anything. i start humira on thursday so i’m hoping that gets me out of the hole. all i do is lay around all day. in my state, you can’t apply for disability until you have been out of work for one year. i am at 11 months so i am applying in february. i live with my family, but i can’t imagine having to support myself with this disease. i’m scared for the future- how will i ever be independent?

  6. Randall January 15, 2013 at 7:54 am #

    Hi,

    I did further research and found there are currently 3 clinical trials actively recruiting for fecal transplant therapies.

    http://clinicaltrials.gov/ct2/results?term=fecal+transplant&pg=2

    Also the previous limited trials that were done were mainly for C diff, however, the research shows that 7 subjects were part of these studies but had severe UC. All fully recovered, med free, within follow up period. Keep in mind that study was mainly for C. Diff and further studies for UC have only recently begun.

    http://www.cdd.com.au/pdf/publications/paper12.pdf

    IF you take those trials and the fact that others had similiar positive experiences doing “home style fecal enemas” this is something that is really exciting.

    IF you think of it as the ultimate probiotic getting straight to the source it is logical. A pill has a hard time duplicating 200 plus types of bacteria in various amts, however, a heathly stool sample most likely has the right doses and types of needed bacteria. The real trick is to provide a healthy surface for the new bacteria to grow. I would assume most future failures (if any) would be due to poor colonization of bacteria due to various factors.

    That is why the “home style fecal enemas” can allow a person to experiment with what works best for the individual for total bacterial colonization. Bacteria needs some time to grow and with ideal conditions.

    Let’s face it, the drug Lialda only has a 39% success rate for reducing symptoms and is not addressing the underlying cause/problem. So it wouldn’t take much success for fecal transplant therapy to take over as the number one treatment within the next few years and Dr’s won’t be able to ignore the data in front of them even if it means less money in their pocket.

    of course this is all my opinion.

    But I hope that some find this informative (possibly redundant for a lot of you) and very exciting like it did for me as I read through the research.

    Stay strong everyone.

    Also, if I feel a need to try this myself (currently my flare is slowly improving with better diet, less stress) I will keep everyone posted of my progress.

    RT

  7. Allison-3
    Allison January 15, 2013 at 8:27 am #

    Hi Sanne-

    Being a Mommy with UC is so tough… but don’t be too hard on yourself.
    My boys were 8 and 11 when I was diagnosed and I was also a hardworking single parent… I ended up having to sell my my business, lost my social life, lost my apartment and moved back home and it killed me to not be physically active. My boys and I lived outdoors in nature and it was so crazy to not have the strength or the bravery to leave the house most days.
    We watched lots of movies for about a year and a half. But, I did make a point everyday to connect with them emotionally/physically. In a way, I think the kids gave me hope and made me not obsess over UC and how horrible I felt every moment of the day. I often felt guilty and that they had too much responsibility taking care of me. I was certain my kids would ALWAYS remember me as the SICK MOM. They say I am CRAZY to think that… they do ALWAYS point out when I look tired and have dark circles under my eyes (HAH boys).

    Now it is 3 Years later (they are 11 and 14 now)… I am coming off of a 6-month nasty flare where I was once agin in bed most of the time.
    But finally (with the help of a wee bit of prednisone) I am starting to feel like ME again and have energy and my kids are soooo excited. They get scared when I am sick and that breaks my heart, but they know it always gets better. :)

    My boys have learned such valuable things from my UC…
    1. They learned how to nurture and take care of someone else.
    2. They learned to love cooking and make nutritious and fun meals.
    3. They learned to value health and vitality.
    4. They got to spend time with me that I never could seem to find enough of before I got sick.
    5. They even run a vacuum and fold laundry!
    6. They make the perfect cup of tea. Their future wives will be STOKED!

    Hang in there- your daughter loves you more than the moon and the stars! Wishing you healing and patience. Yoga and a little meditation helps me stay grounded and connected to myself… give it a try.

    Allison

  8. Sanne
    Sanne van Kralingen January 20, 2013 at 2:25 pm #

    Thanks so much everyone for your wonderful comments. Made me feel a lot better! I had the colonoscopy a little over a week ago, and it showed I had inflamation in the last 30 centimeters of my colon. My doctor then gave me budesonid and mesalazine enemas. And they were a MIRACLE! They are not that bad to take, I have the mesalazine enema in the morning and the budesonid when I go to bed at night. I have used them now for about a week, and my symptoms have almost completely dissapeared. I’m talking only one, normal looking stool a day. No more blood! I was able to play with my daughter in the snow today for 2 hours. I’m sticking to the SCD diet, it’s working well I think.

    @Allison I’ve been thinking about starting to do yoga for a while now. I think it will help you heal your body AND your mind after being sick for a long time. I can’t wait to go to classes now that I’m doing so much better.

  9. Keisha January 27, 2013 at 9:34 am #

    Hi, I’m a mom of 2 young girls (3 and 6 months) from the USA. I have been living w/UC since 2006. I’m in a flare now and it’s hard. I have missed several days at work and I can tell they are not very happy with that. I’m not sure what’s going to happen to me. I was suggested by a coworker to just stay home (if I could I would have done that a long time ago)because they need someone reliable & dependable. I know she’s been complaining to my boss about me because I’m not there to help her some days due to UC or one of my kids being sick. Some people can be so cruel.Its been bothering me all weekend. A lot of people don’t understand our illness. I’m on the maximum dose of Lialda, and it works pretty good, but I still get flares, some worse than others like this one. My family is very supportive and I have a good husband who I can talk to, but sometimes I feel like I’m the only one with UC. I’m so glad you posted your story, and for sites that support people like us. I don’t know what’s going to happen in the future, but I just hope and pray for the best. I feel your pain. Hang in there!

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