It’s amazing how much the body can take…in that same breath its amazing how much the mind does not forget, yet gives you gentle reminders of the past. I truly can not remember what it feels like to be my old self…foot loose and fancy free, pain free….never concerned about what food I put in my mouth or how it would affect my digestive tract. But I do remember small details of a very difficult time in my life. I remember the smell of the hospital room, the sound of the alarms going off when the medication had finished dripping into my veins, I remember the taste of the dilaudid and saline when it got shot into my body to take the awful pain away, I remember the voices of the nurses who took care of me, I remember the loneliness….the mind-numbing loneliness of being in that hospital room.
I remember how excited everyone was that I was going home, after being there a week. I remember the greeting I got from my children and husband and how I never wanted to be away from them again. I remember being able to witness my 3rd childs’ first steps. I remember the awful night I had, every 10 minutes in the bathroom, which landed me right back in the hospital again, less than 12hrs from when I got discharged. I remember feeling completely defeated….and had no idea this was just the beginning of my fight.
I wish I could forget…
Let me back up a bit…
My name is Michelle and I have UC. I was diagnosed in Dec of 2005, one month after the birth of my (1st born)daughter. I lost 50 lbs in 4wks, trying to take care of a helpless infant when nothing you eat or drink stays in your body and all that comes out is blood. They did numerous tests couldn’t come up with anything. Finally, I went to see my families GI and he sent me for a colonoscopy. Once they knew it was UC, I was put on Asacol and Prednisone (60mg) and things seemed A LOT better!! From that point, I don’t think I took my diagnosis that seriously. I was an athlete, invincible….nothing could stop me from living my life the way I WANTED to live my life. Unfortunately, my colon had a different path for me.
From March of 2006 til the summer of 2008, I was fairly flare-free. I had my son (2nd born) in Dec 2007, with no problems. July of 2008 I got a sinus infection and bronchitis which took SEVERAL doses of antibiotics (Z-Packs) to subside. The antibiotics killed all the good bacteria in my body and I developed C-DIFF…which is an infection (similar symptoms as UC) in your colon caused by the antibiotics. Now, the C-DIFF actually sent me into a flare as well….YIPPIE! They put me on Prednisone and upped my Asacol to make the flare subside. As I tapered the Pred, I found out that I was pregnant again…SURPRISE!! So, I stopped the Pred and continued with my pregnancy (the flare subsided). In late March of ’09, I started flaring again. I was about 6 mo. pregnant. They put me back on Pred. Wasn’t working. I finally got to 8 + months and they decided they were going to take the baby out because I was losing weight and not able to keep anything in except rice and gatorade . Fortunately, he decided to come out on his own…4 weeks early (via c-section). I tapered off the Pred and seemed fine for a while.
Ok…..so that catches you up a bit. Fast forward to June of 2010. I started flaring in the beginning of June. The Pred and Asacol were not working….so on June 30th they admitted me to the hospital. One week later, I was home…bad decision. 12 hrs later I was back. I spent another 2 weeks in the hospital…the bleeding, the cramping, the pain, the sleeplessness, the lack of food, the loneliness, the boredom, the uncontrollable crying, the screaming, the feeling of completely losing control, the nurses physically restraining me so that I wouldn’t hurt myself….
I found myself waiting for the pain meds so that I could just go to sleep… I was left there. No doctor would let me leave…they just pumped me full of meds and let me wither away…I lost 40lbs in 4 wks. I started REMICADE while in the hospital. Didn’t seem to work. Finally, I somehow convinced the doctors to let me go…I couldn’t take it anymore. I came home on July 19th.
I got home, finally. My husband was my pinnacle of strength. I was not the best patient. After not eating for 4wks, crapping blood and being in so much pain…I was definitely not a wonderful patient. I couldn’t lift my children, I couldn’t climb the stairs by myself, I couldn’t eat, I couldn’t sleep…I was in hell inside my own body.
It took weeks…everyday was awful. I kept losing weight, losing muscle, losing time with my family. I felt like such a burden on everyone. Everyday the problems that I was having seemed to get worse. I prayed and prayed and prayed that things would turn around. I kept thinking that things could always be worse.
August 2010, after fighting it (and my husband) for weeks, I started SCD. A miracle happened! I started to feel better (not sure if it was the REMICADE finally taking affect, the steroid doing its job or the diet….could’ve been a combo of all). So, thus begins my road to recovery. My strength got better, my energy level increased and my attitude turned around.
Fast forward to October 2010. My visit with the “GI specialist”…. I had waited almost 3 months to see him. There was not much he told me that my regular GI hadn’t already gone over with me. He took me off the Asacol, tapered my Pred and upped my REMICADE to a double-dose. Things were looking up. my bowel seemed to be healing and getting better. I’m still on REMICADE and it seems to be working, but not for my joint pain.
Fast forward again…to January 2011. My JOINT pain was awful. I couldn’t sit on the floor, couldn’t open a jar or a door handle, I couldn’t sit for more than 10 minutes without getting up and limping for a while. I felt like a 90 year old woman, trapped in a 36 year olds body. So I went to a Rhuematologist. She told me that sometimes with UC that the inflammation can penetrate through the lining of the bowel and get into the blood stream and attack your joints. YIPPIE!!! More meds. She put me on METHOTREXATE (commonly used for Chemo-therapy patients, but also used for ppl with Rhuematoid Arthritis in low doses). Let me tell you that that drug is the DEVIL! I would take it and within 45 minutes I would be on and off the toliet for the next 3-4 hours. Plus the nausea was AWFUL. So now the doctor is switching me to Imuran…anyone have any stories about this drug? Would love to hear them….
Ok. So here I am. Its February 2010. I’m alive and ready to start my life again.
I have to thank my husband for being there for me and being so patient through such a difficult time in my life. He is my inspiration. He never gave up on me, even when I wanted to give up on myself. He always had a positive attitude, never showing me what he was going through. He stuck by me through my worst times, being so bitchy, down right mean at times. I thank you, you are truly my soul mate and I love you.
My children, for being so patient, so compassionate for being so little. They really just want to love….that’s all they know. They
do it well. I love you guys!
To my family, thank you for your support, thoughts and prayers. To my friends and neighbors, I can not even begin to tell you how much I appreciate your help this summer. Its amazing what a community can do.
Lastly, thank you ADAM for starting this web site. It has truly changed my life. I am grateful.
All the best,
Asacol Prednisone Remicade Dilaudid Methotrexate Imuran Antibiotics (Z-Packs)
Michelle’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details
living with ulcerative colitis, and starting the SCD diet. as for SCD, about 95% legal foods, breaking the diet’s rules sometimes, but having good benefits from it:)
Hi Michelle! I just wanted to say what a wonderful family you have and how great of them to be so supportive. I must compliment you for all you have been through, and with 3 pregnancies with UC, you are still beautiful with lots of color in your face. My son who is 6 yrs. old is still fighting the fight of UC. He is currently in a mini-flare, and they moved up his Remicade to 6 weeks again instead of 8. He is currently on 1.5 ml (3mg?) prednisone, 50 mg Imuran, Prilosec to help with the Prednisone, SCD Multi-Vitamin, and been following the SCD for 5 months now! I can tell you that I could not call his current “mini-flare” just that had it not been for starting the SCD. It was such a fight in the beginning because he had to give up his favorite foods which were fairly healthy meaning not eating too much junk or take-out, but, it did include precessed foods and chicken nuggets and french fries from Micky-D’s 2x’s a week before. I’m lucky even though he is so young he has always liked meat and vegetables, so, made it much easier to transcend. My poor baby has been through so much, but, he is so strong, and my husband has been a big support through all this too. Isn’t it just amazing how the love of God and our family can get us through just about anything? Over the past 1 and 1/2 years, my son has had to endure the death of my mother, our cat dying just two weeks ago, and starting at a new school. I give my son all the credit for his strength and courage to take on this fight, and, he is winning a little more each day.
Thank you for your reply. So sorry that your son is going through what he’s going thru. He is one tough cookie. At 6 years old, I can’t even imagine. As a mother myself, I truly respect what you are going through. Having a child go thru this must be so hard on you. My hats off to you….hang in there.
As, for the diet I am still doing SCD. (I do cheat every once in a while) but chicken nuggets I usually make with almond flour….and they are pretty good. I try to make food that is SCD compliant as well as kid friendly…its hard. Have you gotten any of the cookbooks from amazon? If not I can forward you the names…there are a ton. How bout yogurt? That seemed to work really well for me (obviously in small doses in the begginning).
It took a while for my Remicade to start working. Then, instead of every 6wks they upped it to a double dose instead. I will pray for him….that the remicade will take affect and the flare will subside.
So sorry to hear about the death of your mom, my thoughts are with you.
If you ever need to chat I’m alwasy here.
Thank you again for your reply.
take care and give you son a big hug from me and my family!
thank you Michelle, that was very comforting. yeah, my little guy has been through one giant emotional roller coaster this past year and 1/2. I do believe his grandma(my mom) and our cat dying contributed to his flares. he actually got diagnosed 6 months after my mother died. along with that, this is the 5th! time we have tried to taper him off of prednisone, and then he flares. he has also had several rounds of antibiotic over the years for ear infections, sinus infections, just because the doctor thought it would help, etc. when are these doctors going to listen to the patient and families and understand that these treatments are actually making things alot worse? i know, everyone on here feels the same way. my son has a very good GI Ped. doc, with over 15 years of experience, but she is mainstream like most, and she also does not believe that diet has anything to do with better gastro health. besides staying away from dairy as he is Lactose Intolerant. I most definitely give him the 24 hr. yogurt! i actually ferment it for 30 hours at about 106F on average to insure he is getting alot of good bacteria back in his tummy. he has it every day, and I make smoothies for him and he loves him. no doubt it is helping. I have browsed some SCD cookbooks on Amazon but have not bought any yet. Luckily I am a pretty good cook, so, i can make things really tasty. if you can recommend a couple books, i am open to that. my husband is trying to push me to start a web page/blog with my son’s experience and my recipes. if i do this i will post on here! take care, and thanks for your kinds words. Love, Linda.
Thank you so much for sharing your story, it mirrors mine in so many ways. I also lost a lot of weight when pregnant with both of my children. I never put it down to my UC though as I have always been overweight and never “suffered” from the wieght loss so I put it down to good luck! It was while I was nursing my son that I went into my worse flare, it’s awful how this disease stops us from nurturing ourselves and our children. I have taken Imuran in the past and have just been pit back on it. It worked well for me. It’s a pain having To get your bloods checked so regularly but worth it if it works. I wish you and your family all the luck in the world and I pray for remission for both of us. Our kids need us strong and heAlthy! Big love. xx
I am pernita from India, i got UC since 3 years now . your life it seems is copy of mine. am 38 years old with 2 small daughters. i have been through exact same hell as you did.i was released from hospital on 8th dec. and it took me 6 weeks to just recover from weakness that envelops your body after such treatments. i swear i have never felt so helpless ever in my life. presently am tapering off wyslone to 20mg with 3g of pentesa. but since last 2 days i think my nightmare is about to start as am getting blood in my stools again. doctors are suggesting surgery but am shit scared as the success rate of such procedures are not known here in India yet.just keeping faith in GOD for now. want to get up one day and free of such night mare is the only dream i get now.i think you know what i mean by that. anyways my best wishes are with you .take care.
I love you. Mike loves you. We are here for you, Adam, and the kids!! xoxo
From one who has been there, I sure do appreciate your story. You and I will be able to live comfortably with this horrible disease. Love You Aunt Belle
It is wonderful that you are able to share your difficult story. You have been through so much, but you are a trouper. Both you and Adam are continuously looking for new and better ways to manage the disease and you both work hard at building a rich and full life.
With so much love,
You are so strong and admire that about you. Thank you for sharing your story so that others can see that they are not alone in the fight. We are here to support you and help in anyway we can.
I’ve always admired you in the past but after reading your story and seeing you suffer (and regain your health!!!) this last year, I’m totally blown away. Your strength knows no boundaries. Your positive spirit is an inspiration. I’m honored to have you as a friend. Love, Ali
We are so glad to see that you are on the mend. You are an amazingly beautiful woman, inside (even with the “crappy” colon) and out. The love you have surrounding you is clear. The smile in your eyes and on the faces of the family shows just what a wonderful life you have. Know that we are here if you need us.
The Hanna Crew
I’d like to thank the academy….
Thank you guys for all your kind words. I really do appreciate it.
Peter, thanks for your response, but I’m a little confused. Can you explain your reply?
Thank you so much for sharing everything you did. I totally remember emailing with you several months ago, and it’s so cool to learn more about you. And wow, what an awesome group of people you surround yourself with, that’s something to be super proud of!
And yeah, Peter, I can usually follow everything, but you lost me too on this one.
Congrats Michelle, I hope to see you live in VeGOOOOSE!!!
Half of your post is like an acceptance speech for an academy award.
You are amazing! I think your story will help a lot of people. If you ever need anything, please let us know. Love to you, Adam and the children.
Peter, thanks for your reply. I guess when you pour your heart out on the web after 6 months of holding it in, you kind of feel VERY thankful to be alive. If I seem like I’m overly thankful….then guess what, I am. Down deep in my heart I am truly thankful to have gotten through an extremely difficult time in my life and I could not have done it with out the support of my family and friends. Sorry, that to you it looked like a joke. But to me its no joking matter.
Thanks for reading though.
What a trying and emotional journey you had in the last few years, but especially this past year. You are truely an amazing woman and I am blessed to have you in my life. Thanks for sharing your story I have no doubt your story will give strength to others!
Amazing story! I hope everything is well with you and I love your hair!
I am seeing these postings way after the fact, but Michelle, like you I had C-DIFF. It was in March,1993. I was on 80 mg of prednisone along with 6 other medications. It took me FOREVER to get off of the Pred. Pred. is wonderful for the symptoms of UC but not great for other things, for example I was very OCDish while on it. Alphabetizing my CDs, repotting plants, you name it. I became better as the I tapered off. Then in 1999, after the loss of my dad, I had another HUGE flare up and was put on 60mg of Pred.. Again, the UC symptoms quickly resolved but this time arthritis pain in ALL my joints except my finger and toe knuckles increased as the dosage of Pred decreased. I finally got to a Rhemotologist who told me I had “Reactive Arthritis”. I spent two years on Vioxx and Prilosec (stomach) until it resolved. Just wondering if you or any of the other readers ever experienced this.
Today, I do have arthritis in my fingers, some Osteo and some Rhuem. but heck I am 48! Hope by now you are doing better. Oh yeah, one more question… did you think the SCD helped the arthritis pain too? Deb
Thank you so much for your story. I am almost 42 years old and I have had UC since I was 10. I remember having to have a colonoscopy with just some xanax and the nurses telling me that I was scaring other patients.
I am curious to see if life is either wonderful (no flares) to horrible with flares and non-stop running to the bathroom. I have been to so many doctors and so many of them have all suggested surgery but I am scared to death. I am a mom of 4 small children and I can’t imagine my life changing.