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Recently Diagnosed -Need Help- What Happens With Your Job?

Minnesota with Colitis

Polly with her Husband

Introduction:

Hi, I’m Polly. I’m 27. I live in Minneapolis, Minnesota, USA. I got married in Sept. 2011, I was diagnosed with UC in Dec. 2011. I was shocked by the diagnosis, as I follow an extremely healthy lifestyle. For my UC, I see a chiropractor who has helped lots of people with UC. He is all about healing the source of the problem (colon), as opposed to just suppressing the symptoms, and not thinking about the future health of the patient as a whole. I am currently in a flare and overwhelmed by the process of applying for a medical leave from my job… and facing the very real possibility of being denied medical leave because I have chosen the path of alternative medicine and whether or not my chiropractor will be accepted by the Leave Administration department as a “licensed physician”. Having a bad day, I am in need of some support and hugs.

My Symptoms:

bloody diarrhea countless times a day, urgency, mucus, fatigue, cramps,
My Story:
My biggest short-term fear: winding up in the hospital.
I’ve been doing lots of research since I was diagnosed. I find that if you search Crohn’s Disease, there is more information available, as opposed to searching for Ulcerative Colitis.
My newest find: Fecal transplants. Interesting topic.My biggest long-term fear: I don’t know what is going to happen with my life as I know it. Up until now, I have traveled extensively internationally (half of my family lives in Brasil). I don’t know what is going to happen with my job… will I have to quit my job?Can my husband and I afford to have me quit my job? Am I going to be forced to take medications that have terrible side-effects? How long will my flare last? (In my research, I see people reporting that flares last anywhere from 18 days to months to years…)My doctor says that flares of UC are ALWAYS caused by either bad food or stress.
I am really curious as to know what happens to other UC’ers during a flare in regard to your jobs?I have been able to work from home for the last 2 weeks, but that grace window seems to be closing now. Did you quit your job? Did you go on medical leave? Was your employer understanding? How long do your flares last?As far as a diet, I have been gluten free since I was diagnosed, plus my doctor has also put me on the “anti-inflammatory” diet. I pretty much buy everything organic, especially dairy. In the USA, they allow crazy hormones and anti-biotics into dairy products, which is why organic dairy is so important. During a flare, he has instructed me to switch to foods with a lower glycemic index, such as sweet potatoes. So during this flare, I have been eating pretty much only organic sweet potatoes and organic hard-boiled eggs. My doctor says soft-boiled is better, but I don’t really care for soft-boiled.

Sending hugs to all.

Where I’d Like to be in 1 Year:
Continuing with probiotics daily, Vitamin D and Fish Oil, in full remission and UC just a distant nightmare…
Colitis Medications I’m Using or Tried:
After my colonoscopy, I took Canasa for about 3 weeks and I have never been so sick in my life.
My doctor (chiropractor) put me on a gluten free diet. (And emphasizes increasing intake of Omega 3 and decreasing Omega 6)
I am taking Probiotics (ProDophilusFOS), Garden of Life Primal Defense, 15,000 IU of Vitamin D, and Fish Oil (5 soft gels a day)

written by Polly

submitted in the Colitis Venting Area

Tags: chiropractor, job





15 Responses to “Recently Diagnosed -Need Help- What Happens With Your Job?”

  1. jamieApril 12, 2012 at 9:28 am #

    I was working when I first became sick, and had to quit because I just wasn’t getting better. I opened a gym at 4 am, alone, so I couldn’t be responsible while running back and forth to the rest room. Half a year later, I began teaching Pre K, at a church, as they were a little more sympathetic. That only lasted half a year, it just became impossible, especially when I would need to be alone with the children and would have to run out the door. I haven’t even attepmted to work since then. That was 2010. Now, I have had to move in with my mother as I have three children and no clue how to be a single mother, sick and unemployed. Thank you for bringing this topic up. I am applying for disability, but I truly miss work. And my previous life. I am only 32, I can’t imagine my life will be a stay at home housewife to mymotherI would love to hear how others are dealing with these issues, wish you the best!

  2. vickeyApril 12, 2012 at 9:31 am #

    Polly I am going thru a flare up as we speak and work full time.. here’s my email addy if ya just just some support or questions.. vickey_69@MSN.com

  3. MikeApril 12, 2012 at 1:13 pm #

    Polly,

    i’ve been on a gluten free diet since January and my symptoms have dramatically decreased. i wouldnt say i’m in remission but i’m feeling 100x better. i am going to begin working out on a weekly routine. about a year ago i was very committed to the gym and eating right and i was in remission for about 4 months. once i stopped the gym, i got a flare up and began to get sick. i dropped from 145 lbs to 120 within 3 months. i’m currently at 125 lbs and i’m feeling optimistic about getting back into the gym. ive also been seeing a NAET specialist. She treats me for certain allergens that i never knew i had.

    • KristaJuly 4, 2012 at 11:08 am #

      Mike!
      Tell me about your NAET specialist. I went to the consultation for an NAET doctor, but I’m not sure if I should get treated or not.

      I currently have ulcers in my large and small intestine, and have had all the usual UC and Crohns symptoms. I developed them about 1 month after my 3rd baby was born, and I was under a world of stress. My GI ran a gauntlet of tests, and according to blood tests, I’m negative for UC and Crohns, positive for IBD, even though I was presenting as though I have Crohns and UC. He prescribed the usual medications, but I refused to take them and I healed myself by following a Fructose Intolerance diet. Took about 6 weeks for bleeding to stop, and 3 months later I felt normal again, as long as I avoided fruit and sugar. Around Mothers Day I took antibiotics (my GI Dr finally convinced me after a bacterial test on my gut came back positive) and it caused a flare up worst than the first.

      I’ve been reading the SCD Diet book, and seeing a wholistic Dr who has been treating me, and promises he can heal me. My husband would like me to wait in NAET until I’m finished with my wholistic doc, because as you know, treatments are expensive. My current Dr said that food allergies are normal for my condition, and they will go away as I heal. I’m not sure what to do. I know NAET wouldn’t hurt, and would probably help, but how much of a difference would it make? What has your experience been? I’m willing to try anything at this point.

  4. OrdinaryWorldWhereRUApril 12, 2012 at 3:53 pm #

    Polly,
    I am going to write something that might be unpopular with some folks but it is what it is.

    1) From any decent success coach: If something isn’t working for you, change it. And if the next thing you try doesn’t work, you change it again. You keep doing this until you get the success you are after. It sounds very much like the chiropractor route isn’t working.

    2) You can not only lose your colon from an out of control, unattended flair, you can lose your life. See I really didn’t want to be on meds so I followed this person who said they could treat it. I did that and I kept getting worse and worse and worse. I actually got to a day where I recognized I was in serious trouble. I finally went to my GI doc and he debated putting me in the hospital. I ended up staying with family for 4 weeks while he and I battled to get me past the issue. He told me the truth after I got back on my feet. He said if I ever let it get that bad again, they might not be able to save me. See my stubbornness nearly ended my life. And I knew it. I knew I was that sick but I just didn’t want to own it. FMLA will cover you being out for a period of 12 or so weeks and not lose your job. The clock starts ticking when you go out and you have 12 weeks every 12 months beginning with that start date. I think you should ask yourself if the desire to not go to a GI doc is really worth everything you have laid out here?

    3) Western medicine isn’t all evil. It kept my grandmother alive for decades. She had cancer, she was treated with the normal treatments. She went into remission for decades. Ask yourself if you had cancer, would you refuse medication? I am not saying medication is the only route but I wouldn’t rule it out.

    4) Everyone is different so a natural treatment is not a guarantee for success. Some people have success with SCD, others don’t. Some people get into remission with meds and stay there for years, others don’t.

    Just because this disease ‘shows’ itself with food doesn’t mean that food is the cause or the problem. It also doesn’t mean that it isn’t serious. There are some strange thoughts that pop into people’s minds when they are dealing with an incurable disease and it is currently incurable. Even I let the thought pop into my head recently about the whole pink slime beef uproar and my disease. Then reason kicked in and I realized if that were the case, there would be many, many millions of people with this disease but there aren’t. There aren’t that many of us out there relative to the population. If it were only antibiotics, then nearly everyone would have the disease. So, every time I am tempted to blame something like antibiotics or how people sit when they go to the bathroom I remind myself that would mean that nearly everyone in the developed world would have this disease. There are diseases that are limited to certain segments of the population too. Given they don’t know the cause of the disease yet, it sure seems like genetic luck of the draw.

    I am truly sorry for what you are going through. The stress of it is nearly as horrendous as the disease itself. Taking it 15 minutes at a time or an hour at a time may be all you can manage right now but that’s still pretty awesome. I hope you find peace and wellness soon and I hope you will continue to post and vent here. I hope that what I have written isn’t upsetting and only thought provoking in a good way.

  5. jApril 12, 2012 at 6:30 pm #

    I agree with ordinaryworld- It may be best to try Lialda or some other medication so that you can begin to heal.Often patients refuse Prednisone but it can be useful to “put out the fire” and then you can heal. The prescription probiotic VSL#3 helps me, Lialda helps me, following the SCD diet helps me, avoiding all dairy helps me. Everyone is different.

    Imagine if you were diagnosed with Diabetes…would you refuse medication? This flare will pass and I know you will get your life back. It will just be less predictable. I have only had 3 bad flares in the 40 years I have had UC. I have worked, raised kids…it can be done.

    I am a 60 year old woman who has had UC for 40 years

  6. Randi
    RandiApril 12, 2012 at 7:05 pm #

    Hey Polly! I also live in Minneapolis. I just went thru this problem. I was in a flare foronths before relief came. My job was understanding at first but I’m a chef so having to run out of the kitchen wasn’t an option for long. Most other employers are sympathetic to this situation. You just have to be completely honest with them and tell them the situation!! Best of luck!!

    Randi

    Rmhowry@aol.com Here’s my email of you have any questions or need help! We are practically neighbors!!

  7. TrishApril 13, 2012 at 1:43 am #

    I would say if you’re in a flare, consider taking the meds. I follow the SCD but it should be noted that the inventor, Elaine Gottschall, was against anyone stopping their medication without a doctor’s say-so. There is no problem with doing something naturopathic alongside your medication – medication may help you get through the immediate problem of a flare and then good diet and supplements may be what keeps you out of it. As for work, I don’t know the US employment laws but I will say that in my case, UC has limited my working life. I left a pressured, quite high-paying career as a journalist in London and downshifted to rural France 12 years ago, and I now only work part-time. The DH and I manage on very little money, but we own our house and have no debts, and just live frugally – it IS do-able. I practise meditation and wabi-sabi, which helps me deal with the things I can no longer have. There needs to be a balance in life, and for UC sufferers that balance must tilt towards health because without it, you’ve got nothing. It may seem unfair on your husband if you drop to part-time working, or working from home, but ask yourself if you would support him in the same situation – of course you would. I hope you feel better soon, Trish :)

    • OrdinaryWorldWhereRUApril 20, 2012 at 6:07 pm #

      Trish,

      What is wabi sabi exactly? I tried looking it up but I am not sure I quite understood. Is it a philosophy? I am looking for additions to help with my UC and my entire life such as meditation and reinforcing a mindset that is beneficial.

  8. Polly
    PollyApril 13, 2012 at 6:33 am #

    Hey All,

    Thank you very much for posting your advice and words of wisdom… I greatly appreciate it. And I welcome all opinions! Keep them coming!
    I had a few pretty rough days… Monday through Wednesday was pretty bad, but I am starting to feel a little better now. My doc has told me to keep an eye on my weight and I was pretty shocked to find that I weighed in it at 117 lbs. this morning (I’m just shy of 5’8″).

    I am starting medical leave from my job on Monday. (None of the paperwork has been started yet, but I am going to start my leave and let the paperwork catch up.) I have an appointment with my doctor (chiropractor) on Monday, too. I also made and appointment with my GI… but he didn’t have any appointments until mid-May. For those of you who read Adam’s book “Feeling Crappy to Feeling Happy”… it inspired me to look for a different GI. My GI also is the type that very abruptly says “Diet has nothing to do with it. There’s nothing you can do.” Period. End of story. And I’m not OK with that. I need a Doc who will at least be willing talk to me.

    I hope everyone is well… best of wishes on your medical journey!

    • OrdinaryWorldWhereRUApril 20, 2012 at 6:10 pm #

      Thanks for the update. I hope you post again. Let us know how SCD works for you. My GI doc said that my colon was in such shape that he didn’t really think diet would get me out of it but he rules nothing out since he agrees they just don’t know. Given my guts sensitivities, I cannot disagree with him right now but things did get really bad so I hope that it is still healing.

  9. JenApril 13, 2012 at 3:55 pm #

    Hey Polly,
    Your story sounds very similar to mine. I was 32 when diagnosed with UC, and I too refused all conventional medication as I was scared of the side effects as well as the long-term damage that they might do to my body.

    I was seeing a naturopath/ acupuncturist at the time. His heart was truly in the right place and he did everything in his power to help me. At one stage he said ‘only eat mashed potatoes’. I dropped so much weight, got sicker and sicker, and like you had to wait to see a GI doctor. By the time I saw the GI I was so fargone, he got me onto Salazapyrine and 40mg prednisone straight away. But it was too late – the blood just kept coming and about a week later, I ended up in hospital for 2 weeks.

    They pumped me so full of meds in that hospital – a powerful antibiotic shot, loads of the prednisone (but in an IV form), the salazapyrine, steroid and salofalk enemas. AND – I kept getting worse. It wasn’t until a second GI doc took me off all food that I turned the corner. And being starving hungry (I was allowed only Jello and Ensure canned meals, chock full of sugar) and full of steroids was a horrible combination. I was a shaking, emotional mess. But, the bleeding did stop.
    I understand your fear of wanting to avoid this experience! After having lived through it, it is a place I am determined never to return to.

    For about a year after this, I continued seeing my GI doc and followed his instructions re: medications. I HATE taking meds but believed him when we said it was the only to tackle this disease. But when he wanted to push me up to the next level of treatment – with methatrexate and the like, I freaked out and decided to try to find another way. (All this time he, and another GI I went to for a second opinion, maintained that diet was not a driving factor in the disease process).

    I then started an exhaustive research regime to find some answers. I discovered the SCD diet and I ordered the book. To be honest it seemed too hard, and at the same time, too good to be true. So I shelved it and found an MD who has a very holistic approach to treatment.

    He put me on a gluten free/ dairy free/ sugar free diet (and a TONNE of very expensive supplements). It worked great for a while, and I even went off all meds for about a year. But the wheels started to fall off; symptoms started to creep back in. I had mild off-and-on flare ups for the next year.

    In December 2011, dissatisfied with the ongoing low-grade symptoms I was suffering and resentful of being back on meds, I came upon Adams site here. It gave me the push I needed to try the SCD diet. I slowly phased off carbs and started the FULL SCD diet – cooking meals straight from the book, gorging on nut flour baking (which is delicious by the way) and honey. It had catastrophic results in that I had the WORST FLARE since the hospital 3 yrs ago! So when people say that the SCD doesn’t work, I suspect that they may have rushed into it, like I did, with bad results.

    I felt really desperate as soon as I started having those full-on bloody craps again. But I was prepared – since I was all set up for the SCD diet, I went back to the beginning and did the INTRO DIET as fully described on the SCD Lifestyle Website (buy the e-book, it’s worth it’s weight in gold). I figured that I had nothing to lose – it was the intro diet, or prednisone.

    After 5 days on the Intro Diet, THE BLEEDING STOPPED. I had a brown crap that morning, and when I saw it, I cried with joy. I still had some gnarly bowel movements after that stage, but that’s because the gut bacteria is rebalancing, you have die-off of the nasties, healing is just beginning etc. But a month later the improvement has been steady and I have ONE BM a day.

    You must follow the instructions in terms of introducing new foods, as described by the SCD Lifestyle guys. 1 new food from the phasing charts, peeled, de-seeded, boiled to within an inch of it’s life, and purreed, every 4 days. I’ve been doing that and it’s working GREAT. I opted to keep eating the SCD yoghurt as I was eating it before and during the INTRO DIET and the bleeding resolved, so it is obviously something I tolerate well (and it is delicious).

    If you decide to try this, be warned – I dropped a lot of weight the first two weeks (and I am tiny to begin with). But as soon as things settle down you start to introduce good fats – coconut and olive oil for example, and that helped me to stabilize and put on a few pounds.

    Would you consider trying this while on your sick leave? If so, I wish you all the best. I am sharing my story with you because I wish that someone had suggested this to me when I was so sick, back at the beginning of my journey.

    Sending you healing vibes from Oz. xx

    • OrdinaryWorldWhereRUApril 20, 2012 at 5:59 pm #

      Hi Jen

      I didn’t rush SCD the 2 times I tried it. I followed the rules exactly but kept getting worse. I still think it is an individual thing so I would never discourage anyone from trying it and in fact if someone does try it and it works, that is completely awesome. There are some great food choices in the diet and I am currently envious. However, if it doesn’t work for someone, that is OK too. They just need to try something different until they find what works for them. And they will.

      I still have hopes that with each passing day I am getting better and better so I could be on something like SCD or Paleo. Before I got the disease, I had natural tendencies to eat Paleo. I just didn’t care for starches.

  10. Lara
    LaraApril 14, 2012 at 7:44 am #

    Oh Polly, I’m so sorry you’re having such a rough time. I think you ought to look into maybe trying a combination of Western medicine & alternative medicine. That way you can have have the best of both worlds!

  11. SherApril 19, 2012 at 1:27 pm #

    Hi Polly, My firt recommendation is to strongly consider the SCD diet. It initially has you eating foods that are easily digested and slowly introduces new foods to determine if you react to a food. It is a diet that is aimed at healing the lining of the colon and rebalancing the colon in general. It can be hard to stick to it, but even 10-14 days on the SCD diet will start the healing process of the colon. Start with this book Breaking the Vicious Cycle: Intestinal Health Through Diet. There are also some follow up books that give more information and detail about the SCD diet in the book that I found to be helpful as well. I live in SE MN and am under the care of the Mayo Clinic for my UC. Regarding work, talk to your HR department regarding FMLA leave. It may be worth seeing a medical doctor in order for you to get the medical leave and tell them what you prefer for treatment. They maybe able to help you get the medical leave you need.

    I feel your pain, and understand the stress you are under. Please know that you are not alone! I wish you the very best! Stay strong, determined, and continue to research the illness.

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