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.
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