Join the iHaveUC.com FREE email list, and join over 15,000 other subscribers managing their lives with ulcerative colitis

What Doesn’t Kill You Makes You Stronger

Polly with her husband in Brasil

Polly with her husband in Brasil

Hello UC Friends!

I haven’t submitted a story in awhile, though I have thought about it many times. My original story was back in April 2012: http://www.ihaveuc.com/recently-diagnosed-need-help-what-happens-with-your-job/

I didn’t really say much about myself in my last story… my name is Polly and I’m 30 now and my husband and I still live in Minneapolis, MN, USA (We actually bought a house in NE Minneapolis this summer!). My hometown is in Appleton, WI. I’m generally pretty funny and laid-back. I’ve been blessed in the area of common sense. I used to love to travel and really traveled quite a bit before I got sick… I studied abroad in college and after college I spent 3 years teaching overseas… one year in rural Guangdong Province, China, one year in Santiago, Dominican Republic, and one year in Rio Grande do Sul, Southern Brasil. My mom is from Brasil, (so I spell Brasil the Portuguese way, not the English way with a “z”). As a child, I spent quite a bit of time in Brasil. I am fluent in Portuguese and Spanish and I used to love to dance. My husband is an architect and we have 12 nieces and nephews.

Some more about Polly:

Ok, so I’m not an avid Kelly Clarkson fan by ANY means, but when I was on sabbatical (see explanation in my story), “What Doesn’t Kill You Makes You Stronger” was seriously my jam. There is one line in the song that was so empowering to me at the time — “Thanks to you, I’m finally thinking about me”… it all goes back to realizing that my health was WAAAAAAAY more important than my job and making lifestyle changes to support that.
For the record, I mostly listen to music in Spanish… some of my favs – Marc Anthony, Juanes, Bacilos, Mana…

I spend pretty much all of my free time doing research online for alternative medicine treatments. I also LOVE helping people through alternative medicine… giving health suggestions to my crohnies or helping someone at work… referring them to a quality alternative medicine doctor… I want to end people’s suffering… so sharing what I learned in Herbalism classes and through individual research… that’s probably my calling.

Ulcerative Colitis Symptoms:

I am currently having pieces/flakes of mucus and a little blood every time I go to the bathroom. I had a few days where I was like a “poop factory” and now I’m just going once a day in the morning, with the mucus flakes and blood the rest of the day. And I currently can’t eat anything (other than the wilted spinach)… so losing a bit of weight too, feeling weak, abdominal pain…

Polly’s Update:

So I have had quite a health journey in the last couple of years. My job, that I wrote about in my last story, was my #1 priority in my life at the time… times have changed, and I have changed. My former employer was more or less understanding, although I was denied short-term disability and therefore my medical leave was unpaid… after I returned from FMLA (unpaid medical leave), I immediately put in my 2 weeks’ notice and left that job. As I look back now, I realize that I was not at all ready to return to work. If I had stayed away for longer, maybe I would have stayed at that job, but I was just too scared back then. Oh well. I had the flare of all flares from the end of March of 2012 to about the end of June of 2012, and then I considered myself in remission starting in December of 2012. I had been in remission from December of 2012 through about last week.

I learned quite a bit from that first (and horrendous) flare. That time in my life when I was so sick (I actually was at my parent’s house because I was so sick and weak I couldn’t be left alone during the day), I refer to that time in my life as “when I was on sabbatical”. I find putting a positive spin helps things overall.

So, I have changed quite a bit… I used to be career-oriented, and as I mentioned, my job was my #1 priority. I’m not like that anymore. I have a job, not a career, and my health comes first. It’s not worth killing yourself for a job and putting your health on the back-burner, and getting worse and worse until finally your body crashes. No bueno. I have been working part-time since July 2012.

So, my health journey… after I got the UC under control in Dec. 2012, I went on my merry way… on a restricted diet, but still more or less happy and, at times, I was able to forget I even had UC. In April of 2013, I got a UTI (urinary tract infection) for the first time ever… and after that, had 15+ months of misery. About every other week or more, I would get terrible UTI symptoms. I tried everything: herbal remedies, teas, TCM (Traditional Chinese Medicine), seeing Western doctors and their antibiotics, crazy stuff – shots of pure apple cider vinegar, etc… I saw the best (supposedly) urologist in the state of Minnesota, and his diagnosis was

“UTI symptoms with no infection present”. (HAS ANYONE ELSE EVER HAD THIS???!!!???)

So UTI symptoms with no infection… they did ultrasounds and urine cultures and found nothing and he basically gave up and told me “some people just have bad luck”. That was obviously not acceptable, as it basically took my life away… so I went back and saw my Herbalist (for those of you in the Twin Cities… go see Matthew Alfs at Midwest Herbs & Healing in Roseville, Highly recommend)… and I had seen him about my “phantom UTI” issue, and once the urologist ruled out other things he said, “I wonder if it is an irritation from a food allergy?” So in I went for food allergy testing and it came back that I was allergic to dairy (which I really didn’t eat that much dairy before anyway… just small amounts of organic dairy in condiment-sized portions), some nightshades, and peppers. Once I cut out dairy, my symptoms reduced drastically. But then, I started getting the same “phantom UTI” symptoms to foods that I had eaten forever… eggs, sweet potatoes, rice, quinoa… so I decided to go paleo/candida diet for a few months and see what happened, and that did help… but it is extremely frustrating that my body keeps developing allergies to foods that I could previously eat. So before this flare, I was only eating certain vegetables and wild salmon. And right now, I’m just eating wilted spinach, since my body is basically not letting me eat anything at all. So if anyone has any advice on stopping this growing list of food allergies/intolerances, you will be my hero forever.

So this flare that I’m in currently is NOWHERE near as terrible as the flare of 2012. I’m just doing everything I can to prevent it from getting worse.

Also for those of you in the Twin Cities area, I would highly recommend taking the Herbalism certification courses at Normandale. SUPER interesting stuff!

I have found some friends here in the Minneapolis area, I call them my “crohnies” (as the majority have Crohn’s) and it’s been wonderful to share advice, ideas, stories, struggles… so Crohn’s/UC affects everyone differently!!! I happen to be EXTREMELY food sensitive, and I have been since I was diagnosed. I cannot eat out. Ever. I do not eat processed food. I only cook things that I made myself and I only buy organic. So that’s a huge struggle for me. I don’t travel anymore, as I don’t know what I would do for food. My husband and I did got to Brasil this January (his first trip) and it ended up being OK, as I stayed at my grandparent’s and other relatives houses and cooked for myself, but still was not able to partake in eating out or ordering in, birthday parties, etc. That is one of the hardest UC struggles for me… Food is such a big part of culture in the US and everywhere else, but I decline invitations to go out to eat and/or being invited to dinner at a friend’s house or potlucks… whenever there is a potluck event at church, I just don’t go to the fellowship event. It is too exhausting to explain to people that you just met why you are not eating. When forced to say something, I usually just reply with a laugh and a “oh, I’m allergic to everything!” And as I’m sure many of you know, people try to be helpful at say, “oh, but can’t you eat this” (and point at a piece of white bread) or “this is gluten free”… be that as it may, it still probably contains, soy, eggs, dairy, sugar, corn, canola, MSG, whatever. People try to be helpful and take you to the table of food and be like “show me what you can eat” and then have to reply: “nothing, literally there is nothing at this entire table that I can eat”. Oooo… so I feel myself getting a little cranky as I’m writing this paragraph. Time to move on, Polly.

So I currently work with a girl who was just diagnosed with Crohn’s disease. She is currently off all meds and she can eat whatever she wants… I am amazed daily as I see her walk in with a Starbucks cup, drinking pop, eating food from Jimmy Johns or Chick fil A. That stuff would literally KILL me!!! But yeah, it’s different for everyone, which makes everything so much trickier. There is no one magic cure. I am sensitive to everything… I use all natural cleaning supplies, cosmetics, soaps, detergents, etc. I can only eat organic… if I eat some non-organic veggies (so has pesticide residue on in or whatever) I will have D for a few daaaays.

So my hubby is pretty amazing. He never complains and he is so supportive and even though I work part time and he works full time, if I’m too tired to do the dishes or whatever, he comes home from a long day and does the dishes… he also eats what I eat at home and when we’re at a friends house and they ordered pizza or something, he won’t eat it because I can’t eat it. He is just too sweet.

So currently I am flaring a bit. Eating wilted spinach cooked in coconut oil. Down to 110 lbs. (And I’m 5’7”). Trying to hydrate and rest. Feeling pretty weak.

I haven’t seen my GI in a couple years. I found a GP in Minneapolis that is OK. I have my herbalist (seeing him on Friday) and my chiropractor. I also have been going to acupressure sessions every other week for the last few months.

Oh, Adam, could you do me a favor, please, and post a link to your amazon site? I am a big amazon shopper and I tried to figure it out the other day, but I just couldn’t find it… please and thank you. ☺

I am so looking forward to everyone’s comments!

Medications / Supplements:

Primal Defense probiotic (just ordered S. boulardii yesterday too)
Omega-Zyme digestive enzyme
Vitamin Code women’s multi-vitamin
Vitamin D-3
CALM Magnesium powder
Fish Oil
GABA
B-12
Licorice Root
Bastyr Formula B (Herbal formula for UC and Crohn’s made by Eclectic Institute)
Glutamine
L-Tyrosine
Iodine (topically)
D-Mannose and Cranberry pills (for phantom UTI’s)
Evening Primrose Oil and Black Haw (for dysmenorrhea)
Turmeric (sometimes)

**Considering adding Boswellia for this flare. Will discuss with Herbalist on Friday**

And of course, DIET: I do not eat gluten, soy, corn, canola, peanuts, sugar, MSG, processed foods, eggs, meat, dairy, alcohol, caffeine, chocolate, nightshades, and probably lots of other things that aren’t coming to mind right now.

written by Polly

submitted in the colitis venting area

 

37-Adam-behind-rock

Hey Polly,

Here is the link to the: iHaveUC Amazon Store (and I just made a special page called “Polly’s Shopping List“)

http://astore.amazon.com/ihaveuc-probiotics-20?_encoding=UTF8&node=5




Minneapolis, Traditional Chinese Medicine, urinary tract infection

11 Responses to What Doesn’t Kill You Makes You Stronger

  1. Adam
    Adam November 23, 2014 at 4:09 pm #

    Hey Polly,

    Thank you so much for sharing your updated story with us. I wanted to ask you about the food allergy testing you did. Could you give us an idea of how many different allergens they tested during those tests?

    Reason I ask is there have been quite a few people from the site who have mentioned how food allergy testing has been very beneficial for them in getting to the bottom of their food struggles. And like you, several have mentioned how the tests showed problems with foods they previously thought were not things they worried about.

    So I was wondering how much testing took place, and if you are through with the testing or if there is more you plan to do moving forward?

    Thanks so much for sharing, and for foods, I’ve always felt the basics like home made chicken soup, or broiled or even bbq chicken is a good thing for me if symptoms try to return. Easy on spices, actually just some salt could be best regarding the chicken bird. Feel free to check out the video I created, highly based on SCD foods located here: http://www.ihaveuc.com/the-colitis-flare-beat-down-party-getting-out-of-my-flare/

    hang in there Polly:))

    we’re all pulling for you:)))

  2. Grant November 24, 2014 at 3:44 am #

    Hi Polly! Did you try strict SCD with the elimination diet? Or a 30 day leaky gut rebuild diet? I got my UC in to remission thanks to Adam and the guys at scdlifestyle.com The main thing was the elimination diet that helped me and then phasing foods in slowly. It’s been 1 year now, a loooong, hard struggle but i’m a million miles away from where i was last year. I’m in remission and med free.
    One thing that i noticed is there is a lot of supplements going on there. I think you could be overloading your body with them. I would also recommend getting tested for SIBO (small intestinal bacterial overgrowth) if you haven’t already and i would absolutely recommend the elimination diet before going on to SCD. After 3 months of SCD start making your own yoghurt and homemade sauerkraut. The probiotic payload in these foods is huge. More than over the counter probiotics. I’m currently training to be a transformational nutrition health coach and also microbiology and the human microbiome to try and understand the complex science of why our auto immune system reacts the way it does to give us UC. The answer so far is we (auto immune disease sufferers) all have a leaky gut so the microbes in our gut are leaking through our intestinal walls in to the blood stream and causing us many problems. Fixing a leaky gut will definitely help address the gut dysbiosis that is going on. SCD is a great diet to follow after addressing your leaky gut and so is Paleo. If you want to get in touch with me i can send you all the info i have from the last 2 and a half years including meal plans for tough cases, phasing charts, rebuild diets etc. etc. I’m @dogmusher on twitter or maybe you can ask Adam for my email address, i’d be more than happy to help.

    • Patricia November 25, 2014 at 5:11 am #

      Hi Grant.

      Would love to have the info you offered Polly.
      My name is Patti and I was diagnosed in 1999. I have tried and subsequently failed to get full remission since…despite methotrexate, azathioprine, mercaptopurine and steroids (infusions and oral) even infliximab provided only limited relief. I am now steroid dependent and in poor overall physical and mental shape with very low weight. I am currently and always on steroids and still having 10/15 bm per day and through the night. I feel diet could be the answer but this meets with dismissive comments from my gastro team. Help help any help or advice please……..

      • Grant November 25, 2014 at 9:42 am #

        Hi Patti! I’d be more than happy to help. I’m from the UK but now live in Norway so it’s only an hour difference if you want to get in touch and i can arrange a time that suits you to have a skype consultation to get some relief from your symptoms. There is no ‘one size fits all’ diet with IBD or any auto immune condition for that matter but rather a personal tailored approach that will be specific to each individual that will address the root causes rather than just treat symptoms. The approach uses elements of microbiology, biochemistry, endocrinology, psychology, nutrigenomics and even spirituality. There are over 100 trillion microbial cells in your body so it makes scientific sense that a balanced and healthy diet will help in retraining your gut microbes to be nicer to you. And this is a start in the healing process. Like I said, please get in touch, I’d be happy to share with you all the info I have. Would also just like to say that this isn’t medical advice and I will never recommend you to stop your medication. Keep a good relationship with your doctor and gastro team and inform them of your wish to try nutritional therapy. Hope to hear from you soon. You can catch me on Twitter for now. @dogmusher (when I graduate I will have my own health consultation website) All the best,
        Grant

  3. Patricia November 25, 2014 at 5:12 am #

    Sorry my medications may have different names in the US I am in the UK. Thanks.

  4. Caroline
    Caroline November 25, 2014 at 10:54 am #

    Polly,

    SO sorry to hear you are having a hard time. I think you have received a lot of good advice here. When I had my first flare, pre-diagnosis, suddenly becoming allergic to everything was my big symptom until everything else really got started. It was so frustrating because I was already eating paleo 80% of the time, but would get so sick from my “cheat” items and meals. By the time I was diagnosed, all I was eating was almond butter by the spoonful (oh, I hadn’t figured out that I was reacting to nuts, too!) and had lost a ton of weight. So I get it. As others suggested, I went on an elimination diet (AutoImmune Paleo, with no cheats) and as I healed, I was eventually able to add things back in. If all you are eating is spinach, you are probably really depleted energetically and that’s not making you feel any better – I would try Adam’s suggestion of plain chicken with salt and see how you do. Sardines were really easy for me to digest in the early days too.

    I know it’s so frustrating – especially around this time of year with all the food! Try to take it day by day and know that it’s not permanent – I have been able to add in several items back into my routine. It won’t be like this forever.

    As for the UTI issue – I had the same thing in college and it made no sense to me either!!! They put me on daily antibiotics which I took for YEARS, and I truly believe that was a big factor for me winding up with UC. It eventually went away but I would have little flares now and then – my acupuncturist eventually wiped it out with a combination of herbs and also drinking pure cranberry (no sugar, not the cocktail stuff) mixed with water. It sounds like you have tried just about everything – it’s so miserable. I hope you feel better soon.

  5. Tita November 27, 2014 at 1:31 pm #

    How about Ensure, Prosure, Fresubin and similar drinks? Maybe cooked potatoes without skin, fish baked in foil (no oil), cooked carrots (with the potatoes), cooked rice?

  6. Tita November 27, 2014 at 1:32 pm #

    Oh, what about ripe bananas (with brown spots on the skin)?

  7. mj November 28, 2014 at 11:20 am #

    Hi Polly,

    Tudo bem? My husband is Brasileiro and I’ve just spent the last 6 months in Brasil which ended in me have the worst UC flare I’ve ever had in 14 years (I’m 32).

    I have a feeling the fact I was stressed from lots of travelling, I was eating non-SCD, non-paleo foods, non-organic, eating in Brasil was hard, I don’t eat red meat or feijoada. Plus I got a case of scabies and the treatment for that was so toxic, my UC took it as the last straw. Unfortunately I had 6 flights to get through to get back to Sydney (Brasil/Chile/NZ/Aus), I have no idea how I made it through all that.

    Since getting back to Sydney, I got a colonoscopy, got put in hopsital for 6 days and now I’m starting Remicade (infliximab) infusions, along with MP6 and prednisone to get things back in control.

    Sorry to hear you have such troubles with food, I can definitely relate. It’s funny, spinach is something I can never touch, even cooked! I miss my greens :( I second giving ripe bananas, cooked carrots, pumpkin, and baked white fish a go? Maybe try a banana smoothie with coconut water and ice? Or fresh ginger tea can help with cramps.

    I see a GI and Dr but also am a huge believer of alternative therapies and see my acupuncturist/herbalist weekly for acupuncture and massage. I also see a kinesiologist, energy healer, and I email a mental energy healer I met in Brasil. Plus I also try to do positive affirmations – check out Louise Hay – her thoughts on GI issues are quite interesting.

    My other thought is maybe try reducing some of your supplements? My acupuncturist has gotten me to stop taking magnesium and fish oil as they can actually increase diarrhoea.

    All I’m taking at the moment is a probiotic, Probex: https://www.metagenics.com.au/products/probex-60-capsules/ plus L-Glutamine (when I remember) and I had an iron infusion yesterday, along with my “harsh” meds.

    I hope things settle down for you and you find a solution soon, it’s such a frustrating condition. It gets to the point where it’s such a mental/emotional disease as well as a physical one, so it’s great to hear you have such a supportive hubby, it really helps!

    Take care!

  8. Betty November 28, 2014 at 10:03 pm #

    I don’t have UC but my son does and that is what brought me to this page. I have however experienced “UTI symptoms without a UTI”. My situation was given the name interstitial cystitis. If you go to a urologist go to one that has an interest in this and from my experience I received better care from women. Either way there are many medications that can help with urinary tract discomfort which is what you have if it feels like a UTI. I have taken several overactive bladder meds and at different times they have helped. The medication that has made things so much better for me is Urogesic Blue but this isn’t the only medicine designed to relieve bladder discomfort. This is a game changer for me when I have a problem. I don’t know how these meds will affect UC but if bladder symptoms are an issue do seek a doc with an interest in treating IC (interstitial cystitis). I agree, “you’re just unlucky” isn’t acceptable but I also saw doctors with that level of compassion. Good luck!

  9. Betty November 28, 2014 at 11:07 pm #

    Let me add that the first time I had bladder symptoms without a UTI it was after a severe one. It can be maddening because treatments for UTI’S can be irritants for IC. This includes antibiotics and high acid foods like cranberry juice that are recommended to prevent or overcome UTIs. Meds like Urogesic Blue however work well for both.

Leave a Reply