I was diagnosed with UC in 1999, a few months before I was to get married. Was in a tremendous amount of pain and not sure what was happening to my body....had never heard of UC or Crohn's before. I was 23 years old at the time. Went through a series of testing and the dreaded colonoscopy and discovered I had pan-colitis. I was miserable and tried many different types of meds. For a while they would work, but then I would inevitably end up back on the steroids again....and I hated them. I hated what they did to my body, my self esteem, and my emotions.
I was married in November of '99 and a few years after (early 2002) found out I was pregnant....with not one but TWO babies...TWINS!!! I was incredibly excited and very nervous from a disease standpoint. That pregnancy was the healthiest (from a UC perspective) that I had been in a few years! I ended up on bedrest and had the boys 2 months early...and not long after, began having a flare up of my UC symptoms again. Hadn't had any of that for the entire pregnancy! By the time the boys were about a year and a half old, I had been through many types of medicines and was taking 36 pills a day - including ones to counteract the effects of other pills. It was a mess....I was a mess. I felt like I wasn't getting any answers from my GI doc at the time, so I sought out answers and help from who I had heard was the "best of the best"....the Cleveland Clinic in Cleveland, OH. I went to see one of their GI docs and he told me - in no uncertain terms - that I was no longer responding to medical treatment and needed to consider surgery. I went home armed with information regarding a surgery that would remove my entire colon and use the bottom part of my small intestine to create a pouch that was in the shape of a "J"....it would be in 2 stages and, according to the doc, was my only real choice.
Now understand that at this point, Remicade was not yet approved by the FDA for people with UC...and being that it is extremely expensive, I couldn't possibly pay for it on my own. In addition, the laproscopic version of this surgery did not exist yet either....ahh, if only a few more years had passed before my situation occurred!!
I had the surgery in June of 2004, and the "takedown" in December of 2004. I had a VERY rough recovery, and had several complications. Unfortunately, I live in a very rural area, and did not have access to a doctor that was familiar with the J-Pouch procedure. Whenever I went to our local hospital due to a bout with pouchitis or dehydration, I would have to tell the docs there about my condition - which they were AMAZED with since they had never heard of the procedure before (NOT very reassuring) - and I would literally have to tell them how to treat me and what meds to give me due to the research I had done online....scary, right????
I was (for the most part) symptom free for quite some time....with the exception of an occasional bout of pouchitis over the next few years. In 2006 (only 2 years after my surgery) I gave birth to my beautiful daughter! The Cleveland Clinic even asked me to participate in a "study" because I was one of those "rare" people that got pregnant naturally after having this surgery...
I eventually started feeling really rotten again and decided that it was time to try and find a GI doc that knew something about this surgery and my condition. I finally found a GREAT doctor (with, mind you, a HORRIBLE staff working for her) and she re-diagnosed me with Crohn's disease. I went through a period of several months where I was thoroughly pissed-off and questioning "why me?"....had I been correctly diagnosed with Crohn's in the first place....I could have had the Remicade and possibly postponed such a radical surgery for maybe even years! After working through all of those emotions, I began to accept my diagnosis and started the Remicade. I have taken it for almost 4 years now, and it has been a TREMENDOUS help to me. I am a single mom of 3 kids with full custody and work a very high profile job 40 minutes one way out of town, putting in about 60 hours per week. I was able to live my life again.
That said, I have run into a significant amount of health challenges this past 6 months or so...everything from pneumonia 3 times, strep throat 2x, bronchitis 2x, shingles, and c-diff. NOT fun. Struggling to maintain the pace that I've been doing for several years now. I've gotten really down the past couple of months, and for the first time since my re-diagnosis have begun to wonder "why me" again. I usually try not to think that way....I know there are many, many people that are a LOT worse off than I am, and I am grateful for my lot in life, I really am....but wow....here lately it's been a tough "pill" to swallow.
I was married in November of '99 and a few years after (early 2002) found out I was pregnant....with not one but TWO babies...TWINS!!! I was incredibly excited and very nervous from a disease standpoint. That pregnancy was the healthiest (from a UC perspective) that I had been in a few years! I ended up on bedrest and had the boys 2 months early...and not long after, began having a flare up of my UC symptoms again. Hadn't had any of that for the entire pregnancy! By the time the boys were about a year and a half old, I had been through many types of medicines and was taking 36 pills a day - including ones to counteract the effects of other pills. It was a mess....I was a mess. I felt like I wasn't getting any answers from my GI doc at the time, so I sought out answers and help from who I had heard was the "best of the best"....the Cleveland Clinic in Cleveland, OH. I went to see one of their GI docs and he told me - in no uncertain terms - that I was no longer responding to medical treatment and needed to consider surgery. I went home armed with information regarding a surgery that would remove my entire colon and use the bottom part of my small intestine to create a pouch that was in the shape of a "J"....it would be in 2 stages and, according to the doc, was my only real choice.
Now understand that at this point, Remicade was not yet approved by the FDA for people with UC...and being that it is extremely expensive, I couldn't possibly pay for it on my own. In addition, the laproscopic version of this surgery did not exist yet either....ahh, if only a few more years had passed before my situation occurred!!
I had the surgery in June of 2004, and the "takedown" in December of 2004. I had a VERY rough recovery, and had several complications. Unfortunately, I live in a very rural area, and did not have access to a doctor that was familiar with the J-Pouch procedure. Whenever I went to our local hospital due to a bout with pouchitis or dehydration, I would have to tell the docs there about my condition - which they were AMAZED with since they had never heard of the procedure before (NOT very reassuring) - and I would literally have to tell them how to treat me and what meds to give me due to the research I had done online....scary, right????
I was (for the most part) symptom free for quite some time....with the exception of an occasional bout of pouchitis over the next few years. In 2006 (only 2 years after my surgery) I gave birth to my beautiful daughter! The Cleveland Clinic even asked me to participate in a "study" because I was one of those "rare" people that got pregnant naturally after having this surgery...
I eventually started feeling really rotten again and decided that it was time to try and find a GI doc that knew something about this surgery and my condition. I finally found a GREAT doctor (with, mind you, a HORRIBLE staff working for her) and she re-diagnosed me with Crohn's disease. I went through a period of several months where I was thoroughly pissed-off and questioning "why me?"....had I been correctly diagnosed with Crohn's in the first place....I could have had the Remicade and possibly postponed such a radical surgery for maybe even years! After working through all of those emotions, I began to accept my diagnosis and started the Remicade. I have taken it for almost 4 years now, and it has been a TREMENDOUS help to me. I am a single mom of 3 kids with full custody and work a very high profile job 40 minutes one way out of town, putting in about 60 hours per week. I was able to live my life again.
That said, I have run into a significant amount of health challenges this past 6 months or so...everything from pneumonia 3 times, strep throat 2x, bronchitis 2x, shingles, and c-diff. NOT fun. Struggling to maintain the pace that I've been doing for several years now. I've gotten really down the past couple of months, and for the first time since my re-diagnosis have begun to wonder "why me" again. I usually try not to think that way....I know there are many, many people that are a LOT worse off than I am, and I am grateful for my lot in life, I really am....but wow....here lately it's been a tough "pill" to swallow.
