Crohn's Disease Forum » Your Story » My roller coaster ride

02-09-2012, 12:45 AM   #1
New Member
Join Date: Feb 2012
My roller coaster ride

Hi all,
My Crohn's story is that of a never ending roller coaster ride. I'm sure most of you can relate. I was first diagnosed with borderline Crohn's about 7 years ago. At the time, my symptoms were mild...weight loss of about 10 lbs, stomach cramps, fatigue, anemia and malabsorption. My flare -ups would last about 2-3 days. When first diagnosed, I was taking Pentasa and prednisone. Over time, despite carefully monitoring my diet, stress levels (stress is a huge trigger for me) and changing my lifestyle (was a type A personality, perfectionist and workaholic), my condition worsened. However, my treatment remained the same and I continued to work in a highly stressful corporate environment (my Dr. had not suggested that I stop working). By 2009, my weight had plummeted to 72lbs (I was 40 and 5 ft. Tall), I struggled to make it through each day, had a bowel movement at least every hour on the hour and was afraid to eat anything for fear of getting a flare up. Once carefree, outgoing and independent, I had deteriorated rapidly. I was in constant pain,always cold, extremely weak and malnourished. As can be expected, all my friends and family were extremely worried. My only saving grace at this time was that my husband had a relocation opportunity with his employer. We ended up moving from Toronto to Texas. I welcomed the change because I thought the warmer weather and slower paced lifestyle would be positive factors in improving my overall health. My new gastroenterologist in Texas was a god send. In reviewing my medical records and present state, he concluded that I had the worst case of Crohn's he had ever seen. He put me on a rather aggressive treatment regimen - 40 mg Predisone, Remicade infusions every 5-7 weeks, B12 , Lialda and he also told me I had to stop working. His approach worked....I gained about 15 lbs, my energy levels increased and my pain was reduced. I was in remission for about 7 months before I had a flare up. The worst part of a flare up is that I would relapse and all the improvements I had made would reverse themselves. My weight tended to drop by about 15 lbs in less than 2 weeks. This trend continued until last August when I had my worst flare up . My weight dropped to 72 lbs and my overall blood health was seriously out of whack and my HB was critical(level 7) To make matters worse, I had an anaphalactic reaction to the Remicade. For the first time since being diagnosed, I was scared that I no longer had the ability to fight this disease, however, i tried to maintain a positive outlook. My Dr.wanted to remove a part of my colon as he thought this would minimize the intensity and frequency of my flare ups. However, I was too weak to withstand surgery. In an effort to build up my strength I have been having 3 iron infusions a week since Sept.2011. I am also on Predisone , humaira and Pentasa. The new treatment regimen seems to be working and I have been in remission for almost 3 months. I am hoping this new phase will last. It has been a constant physical and mental struggle for me. For me, the worst part has been that so many people were worried about me. I am thankful for all their prayers and support ....I wouldn't have made it through my worst days without them. They have taught me that it is ok to ask for help. I am also grateful to my Gastroenteroligost. Although I have had many setbacks,I know he is doing everything possible to help me fight. Crohn's can be difficult to treat because it is highly unpredictable (a whole host of factors can trigger a flare-up) and it is rare that 2 people will have the same symptoms,food aversions etc. I hope my story gives everyone hope that with the right treatment,support system and positive frame of mind, this disease can be fought.
02-09-2012, 01:26 PM   #2
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hello and welcome to the forum I am pleased that after a tumultious time you have been feeling better the last few months, fingers crossed this continues and you have then have a working treatment plan I hope you find the forum and helpful and supportive as I have, it will be good to see you around.

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-09-2012, 05:38 PM   #3
Join Date: Dec 2010
Location: Pennsylvania

My Support Groups:
Hi Peggi, and welcome to the forum. Sounds like quite the roller coaster ride indeed. I'm glad to hear that you like your TX GI and was curious if you've noticed any other differences in moving to a new climate? There are members here from all over the world, but I don't remember seeing too many who moved from Crohnada to Texas!

I have only visited TX and thought it quite warm, and absolutely loved all the "real" Mexican food, although found it not to be very friendly for my gut or very good traveling food. Very tasty though! Again, welcome!
02-09-2012, 07:51 PM   #4
Stephy Chelle
Join Date: Feb 2012
Location: Port Lavaca, Texas

My Support Groups:
Hiya Peggi. I too live in Texas, born and raised and LOVE it!!!! Where about do ya live? I'm in south Texas. Warm weather and palm trees!!! I'm Stephanie and am diagnosed intermidiate colitis awaiting more testing. 15 years with symptoms. Your story is truly inspiring!!! You need to know that! I hope you continue to be well and God bless you!!!

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