Welcome to the Jungle

here I am

here I am

Meet Maxie M:

I was diagnosed April 2011. First colonoscopy 2011 – Last colonoscopy May 2013 – Since diagnoses In and out of remission frequently. Longest remission has so far been 3 months. Have had 3 different GI’s and most recent GI is not through choice he is the only one in the city I live in.

Some more about me:

I am adventurous and free spirited. If i was an animal I would be a snow leopard and if I was a fruit i would be a pomegranate yep, why you ask ? The unusual is me. I have always been different you know if the flock was leaning one way id walk the other.

A good practical joke and some silly humour is what gets me through the tough times or just hanging out with my best friend, my mum.

Some would say I can be my own worst enemy as I am quite the loner but this is just a coping mechanism and I guess UC has forced me to get to know myself.

I love my dog ! So much he is like my little healing tool, such a love in my life.

Symptoms:

Back pain, night sweats, low iron. Minimal urgency as slowly heading into remission.

Welcome to the Jungle

Well this is my story and I’m sticking to it haha.

I was diagnosed in April of 2011 following what seemed nothing to be to concerned abot since i really only had some blood after BM’s and constipation. My Gi at the time was horrible and the first meeting he asked me to bend over & before I knew it I had my first meeting with Mr sigmoidescope and no warning ! Gi actually and literally was so blaze and arrogant telling me of UC diagnoses and passed me a prescription for pentasa suppositories. I had so many questions and in response I was told to look it up ?! I was confused and in a way I thought well if he had no urgency to warn me of the severety of this illnesss then when I feel better i will stop taking my meds. So i did just that, big mistake indeed.

It was a week after i finished the pentasa that i started with horrible cramping, constant urgency, joint pain, night sweats, fever & blood. So much blood you could fill a dam yep. I was hospitalised in June 2011 for blood loss and kept in for the night to regain my fluids and settle the my heart rate. I did not need a transfusion although I was told if I had left it for just an hour later that would have been the case. I decided to find a new Gi and struck gold. My new GI changed my meds advising me that I needed a colonoscopy and switched medication. My colonoscopy showed my whole small intestine ulcerated to the halt and was prescribed, sulfasalazine & 40mg pred to taper and let me say Pred has impeded my life almost more than the UC ! Now i am on Salafolk and again this is looking to change.

Look i knew nothing about this evil until diagnoses and it has robbed me of so much that i feel like my soul is dying most of the time. A life well lwts see it consists of um my home, my toilet the doctor and friends ? I don’t bother with friends anymore as they just think I’m blowing them off and when ever i make plans the evil kicks me down again assuring me i am not to have a social life. That as depressing as it sounds is my life and it has gone from fun, adventurous and happy to being a slave to the UC.

My complications have been that my irons are so low to the point of injections and i look at leas a thundred as the black rings under my eyes are not becoming, hair loss has seen my hair volume reduced to half its natural thickness and my hair was definatley my thing so this is still hard to except. I have had re current UTis since first pred dose in 2011 and it is worse than ever at present to the point of being ref to urolagist for further examinations and the doc thinks it may be Interstial Cystitis, yet another inflammation :-(

On the positive – family has saved me and is what gets me throgh the hard times, my mum is supportive and really educated herself on the illness so she can understand to a certain degree and at times point me in direction that may be helpful. She tries and it makes my heart warm. You learn fast who the real people are in your life and you learn alot about yourself, well I have.

I am trying and fighting hard to not let this beat me and im giving it everything i have. I am on my own and I have chosen it that way because I can suffer in silence you know and to be honest i wont be open to love until I am so well I am glowing and i look forward to glowing again as i have learnt to not take anything for granted.

My concerns are will this finally beat me to the point of giving in you know. I would love to not have to see my doctor for even a month I would be happy but every other week im just over it. Worrying about going on trips and random adventures is just a mission as I am always wondering were the nearest loo is and obviously not letting on that im anxious about were the nearest loo is.

I tried recently to work longer hours and this sent me in the throws of a flare. I have really been through alot and im sure there are so many more that read this and relate but the rony of it all is you really feel so alone.

One thing is for sure i have seen life through hungrier eyes than ever before and am trying to soak it all up to the fullest when symptom free.

Medications and Supplements:

Salafolk 8 X 500mg daily In the morning
Iron injections regulary (borderline anemia)
Vit C X 2 daily
3 X Cranberry tabs daily
Folate X 1 daily
4 X probiotics daily
On and off prednisone since diagnoses

I belive prednisone has caused my debilitating Cystitis issues as since my first course have had issues and at one stage i was not on pred and in remissioin for 3 months I had no issues with UTI’s then had a flare and back on pred, been plagued with UTI’s since.

written by Maxie M

submitted in the colitis venting area









14 Responses to Welcome to the Jungle

  1. Sarah November 10, 2013 at 6:43 am #

    We have some similarities so I really feel for you. Wish I could just give you a hug. You are so strong even the times you feel you aren’t.

  2. Adam November 10, 2013 at 6:49 am #

    Maxie,

    You sound so similar to how life was for me five years ago. It was so strange to be going to the doctor’s office more often than going to the grocery store (same deal for the pharmacy for that matter.)

    But yes, things do get better for so many of us, and not seeing the doctor for a year or more is entirely possible (at least not for UC related things – don’t forget your annual physicals…)

    I’m going to send you two free copies of both ebooks I wrote. Read them. You haven’t made any mention on altering your diet at all in your story, so you can read about what I eat in the cookbook and you can read my whole story as well. I’ve been off medications completely 4 out of the 5 years since my diagnosis. I’ve had 3 GI doctor’s visits in the past 3 years 2 being for my colonoscopy and I’m pretty darn happy with how things be a going. My hope is you’ll see that its for sure possible for you to get back into the lifestyle you miss and want to be living, and no need to be a slave to the UC forever.

    I wish you the very best, thanks for finally sharing what’s going on with you, and thx again for sharing your picture,

    -Adam

  3. matt November 10, 2013 at 7:54 am #

    You said your whole small intestine is involved? Have you tried elimination diets? I and several family members have similar issues. We all have gluten intolerance. Only one of us has been diagnosed with celiac. Only way they found it was by genetic testing. For another. And for me it was dumb luck. One doc told me I had chrons the other GI doc said it was Uc. I have been gluten free and med free for over a year now and I feel much better.

    • Maxie M
      Maxie M November 10, 2013 at 5:20 pm #

      Hi matt,

      In response to your comments in re to diet yes i am gluten and dairy free and it really has donr nothing to be honest. I have tried so many diets and supplements and i really seen no difference. I know what my trigger foods are but this is ever changing so i keep a diary.

  4. Kevin C. November 10, 2013 at 8:44 am #

    Maxie, Hi my name is kevin, I to have U/C like yourself, Found out I had this disease in my early 20’s. It’s a horrible disease. I have found out that diet & finding the right med that works for you will help you greatly ! My aunt also has U/C ( My dad’s sister ) I would guess that is where I got it from ?! I have been in remission for 10 yrs. Very little bleeding, If any ! Little constipation! I’m gonna tell you what meds. I take! 3 ~ 400mg. tablets of asacol every 12 hrs. & 1 ~ 50mg. tablet of Imuran every 12 hrs. The Imuran & asacol made the most improvement of any meds. I’ve tried over the past 12 yrs. My aunt contacted me to ask me what meds. I was taking to maintain remission for over 10 yrs. & I told her to ask her doctor to prescribe her the Imuran, Now she has been in remission for about a yr. & a half ! I hope this helps you! please feel free to write me with any questions you may have ! Kevin C.

  5. Geof November 10, 2013 at 9:20 am #

    Hey there, I can really relate, I fell sick just after i graduated college and then bad doctors misdiagnosed me over and over again for about 8 months until Feb of 2011, I was 23 then, and I can honestly say in the 3 or 4 years ive had this disease Ive never had a good day. I used to love life, I used to love doing things, now im stuck in a house 24/7 I can barely drive more than 5 -10 minutes without having a stomach related problem and i’ve been in a doctors office or er nearly every 2 weeks for as long as i can remember…

    The medications are often the worst part of this disease, Pred made me a little better but it made my hair thin and my body gain water weight and lose its shape, asacol is an overpriced placebo, cortisol enema’s reduce flare symptoms, Humira nearly killed me, 6mp nearly killed me, I’m iron deficient and the supplements make my symptoms worse… all this while getting jerked around by the doctors so i barely have the energy to yell at them…I’ve tried every diet but short of eating nothing… none of it works… this whole experience just plain SUCKS…. it certainly does feel like i’ve lost a lot of my young adult life. im looking forward to trying remicade soon, but soon is relative to when these idiots get off their asses to help me… its so frustrating…

    so blah blah shits bad… whats good? friends make the world a better place, I have a weekly meet up where my closest friends come to hang out with me we smoke hookah and it certainly takes my mind off of things and settles down the urge to be amongst others. Online games work surprisingly well for building a sense of community when youre all alone stuck inside sick as a dog.

    In order to adapt to the depression that comes with this disease I’ve learned to force myself to learn new skill sets and push myself to higher education on the subjects that interest me, I use music as a great way to vent all of my frustration, and art as a means of desire fulfillment,

    Meditation and tai chi are great for de stressing situations and re learning to live within your body so that your symptoms dont trigger as quickly.

    Relationships… I havnt even attempted, I personally dont think that its possible with this disease to maintain a serious adult relationship, but if you do intend to go out with someone or even just be at ease with yourself and leave the house I recommend finding a good Probiotic that is superstrength and works for you (its really trial and error), I use a full dose of BIO K non dairy live culture and a 750 mg vicodin everytime i go somewhere, and its what I’ll swear by…

    Alcohol… in short doses reduces inflammation but not every alcohol is the same… I can drink whiskey or vodka straight or with coke, and be fine, everything else including beer puts me in the restroom 10 + times the next day.

    anyways… you are not alone… Im sick every day… and I am pissed off about it… I want my life back… but i dont see it getting better… and only 2 of the dozens of doctors i’ve seen are worth a damn… but i promised myself id wait until exhausting every option before i thought about surgery… that or the 5 year mark…

    • Maxie M
      Maxie M November 10, 2013 at 5:22 pm #

      Hi Kevin,

      Thanks for your insight :-) Yes i am looking at Immuran as next point of call so will see what happens with that. I am on Salafolk which is the same as ASACOL just different name for different country.

  6. Angela November 10, 2013 at 1:49 pm #

    Hi Maxie,

    When you’re first diagnosed is the roughest time, trying to adjust to everything that is changing whether it be your health to your whole life style. But I promise you it WILL get better! I was diagnosed 12 years ago when I was 13. For the last 10, I’ve been on remicade and have successful been in clinical remission for most of it. But I did take the first 4 years to get everything right…my diet and my medications. It will take time but you will find what will work for you! The biggest part is staying positive, you’re mind is so powerful and just trying to look on the bright side of things will help. You will have your life back, but sometimes you have to fight for it, even when you’re feeling crappy. I’ve always believed that no matter how bad a I felt that if I didn’t at least try to still do the things that I wanted to then I was letting UC win….and I wasn’t about to let that happen. I’ve done everything from hike Mt. Fuji to scuba dive in the middle of winter. And don’t worry you’ll eventually stop seeing your doctor so much! I only seem mine twice a year now.

    I do recommend making an adjustment to your diet…even if its just removing overly processed and artificial items….it may not cure you completely but it will help! Once you get your inflammation under control, your body will be able to absorb nutrients again (like iron) and I’m sure you’ll get off the injections. And I am sooo glad you have such a supportive family…it makes such a difference to have people to lean on.

    Sending you my prayers!

    • Maxie M
      Maxie M November 11, 2013 at 12:55 am #

      Hi Angela,

      You words are truly inspiring ! What a fighter you are. I really have a very strict diet to be honest, i have always been really healthy to the point were all of my family were very shocked that this became my fate. I have cut gluten and lactose and NEVER eat junk food or processed foods. Eat lots of whole foods. I guess this is why this illness can be SO different foe everyone and all in all just plain confusing. I do know one thing I am on and off anti biotics for continual UTI infections as a result of prednisone and this is the main culprit of my constant flaring. I go on pred am plagued with UTIs and its back and forth really Actually i have had 3 infections this month alone :-( and this week I am headed for tests to see if there is something deeper seeded. I feel like if i can get this under control and never have to use pred again i can see full remission.

      Thank you for your inspiration ! I am wild at heart too x

      • HEATHEN HOLIDAY March 7, 2014 at 11:42 am #

        I go through the same thing! Constant UTI or yeast rashes as a result of the prednisone, and then get prescribed the wretched antibiotics again. What a vicious cycle!

        I am going through another flare right now, terrible back ache, fatigue, and bleeding… ughhhh!! Time to rotate my diet around again because obviously something I am doing isn’t right. (I am on SCD except for NO dairy and NO grains.)

  7. Col November 10, 2013 at 7:28 pm #

    Maxie,
    I was diagnosed just about the same time as you and have struggled a lot as well. I was pregnant at the time and my flare got even worse post-birth, but I think somehow having the baby to focus on helped me not totally spiral off the deep end, even though it was very tough to be so sick and be a new mother. I am not in remission but am slowly recovering using the SCD diet and supplements. Things only changed for me after I committed fully to the diet. This forum is a lifesaver–filled with ideas for all shapes and sizes, ie people who go the natural route, the medical route, or surgery. Hang in there and check in with us again to let us know how you are. Most of us have been to that dark place with this illness and we really know how you feel. I’m glad you’ve reached out. All the best.

    • Maxie M
      Maxie M November 11, 2013 at 12:46 am #

      Hi Col,

      Thanks for your response :-) It seems that when there is something for me to focus on it helps me get through it so I can understand your situation. As much as a flare is uninvited having the newborn to focus on would have been heaven sent in some ways. I have heard so much on the SCD diet that i am going to look into it.

      Thanks again, hope you see a full recovery also x

  8. Allison November 11, 2013 at 6:20 am #

    Hey Maxie-
    Hang in there girl! I was diagnosed with UC 4 years ago and it wrecked my world. I found with UC, you can’t just rely on one thing. One doctor or one drug or one supplement is not the solution. I wish there were a miracle pill to make it all go away- I think we’d all try it… but there just is not. I gave up meds after a year because my hair fell out, I was anemic and underweight and I still felt absolutely vile. I knew that I was just addressing the symptoms and never getting to the root cause (causes) of disease. For me, I needed to really take a look at my life holistically- addressing negative influences, emotional issues, my own negativity and stress. Really accepting I was committed to wellness and totally living in the moment. UC is my teacher and it is a super bitch sometimes but getting through to the other side of pain and loneliness and isolation is so liberating.
    I tried lots of things but it wasn’t until I fully committed to the SCD diet 6 months ago that I saw real shifts in my body. Adam’s ebooks are awesome and lots of great advice here and pecanbread.com and scdlifestyle.com- they breakdown the diet and allow you to truly figure out what you are reacting to. I have Leaky Gut and I feel like it is finally healing. I do yoga and LOVE acupuncture- it helps balance my nervous system. Just take each day as it comes and do your best. Healing takes time. Have your vision for the future and keep imagining that. You will have love and life and adventure again!
    I am still on my healing path but I am able to live more carefree “insouciance in French”. I just got back my first vacation in four years and it was totally INCREDIBLE- I snorkeled and hiked and just LIVED.
    Big hugs from New Jersey.
    Allison

  9. Allison-3
    Allison November 11, 2013 at 6:24 am #

    Also- read Breaking the Vicious Cycle.

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No matter what, colitis flares don't last forever, don't forget it:)