Hello Everyone,
My name is Jayme. I was diagnosed with Crohn's Feb 2009, but had symptoms since Dec 2007.
The first year was hard, I didn't know what was going on. The symptoms would come and go, so I originally blamed the bowel problems on a lactose sensitivity because it runs in my family. That spring of 2008 my feet began to swell for no reason and I developed the painful red nodes all over my lower legs, I went to my primary doc, they couldn't figure it out. She sent me to a Rheumatologist who diagnosed me with erythema nodosum, he gave me some meds that cleared it up but didn't know what was causing it, he ultimately thought that it was my birth control, so I switched brands and still no help, At that point I quit going to see him. At this point I had also lost about 20-25 pounds without even trying.
I think I began flaring again around Christmas 2008, I was going to the bathroom 10+ times a day. I couldn't hold in even the blandest of foods, I would be bedridden with abdominal pain, I would have to ball up into the fetal position and that was the only way I could relieve some of the pain. I was anemic, had a B12 deficiency and barely had any energy to to walk from the living room to the bedroom. I talked with husband, my parents and some friends and finally went to a Gastro doc early 2009, he immediately scheduled a colonoscopy and was diagnosed after that.
My doc was great, he went through everything with me in great detail gave me all my treatment options and talked me through each one.
I started on the least aggressive treatment. I was on Pentasa 200mg 4x a day plus Entocort , I don't remember the exact dosage but it was 3 times a day. At that point I was thinking about if this is what my life is going to be from now on, 10+ pills everyday? Then that mixture was working and now my legs were starting to swell again, and we found out that the erythema nodosum was an indicator that I was about to start flaring, which was what was starting to happen again. During this whole period I had lost and additional 45-50 pounds.So my doc then switched me to prednisone. THE WORST DRUG EVER (horrible side effects). I was at 40mg a day, I have to say it did work, I was for the most part symptom free, my legs cleared up within a week. I was still taking the Pentasa, my doc wanted to keep me on it for maintenance so I could eventually taper off the prednisone. I was doing good, and so my doctor started tapering me off the prednisone, I did fine till I hit about 10mg a day, then I started noticing symptoms creeping back up. Also at this point a new problem had popped up, because of the prednisone I had developed a perianal abscess and fistula. I originally just thought it was hemorrhoids, but this pain was different, I went to my primary care, because my GI was out of the office, and she got me in to a colorectal surgeon that day. They scheduled the draining of the abscess for the next day. At this point I could barely walk, I couldn't sit, the only comfortable position was laying on my left side, even that was still a little painful, good thing I had vicodin, but the morning of the surgery I was told I couldn't take my pain meds, then when I got to the hospital after being in excruciating pain all morning the anesthesiologist told me I could have taken them, but then he gave me a little morphine and I was okay. The surgery was fairly easy and quick, the recovery not too bad.
But I still had the fistula and now my doc really wanted me off prednisone so I decrease the risk of developing another abscess. He then put me on Remicade, we were originally talking Cimzia or maybe Humira (depending on insurance coverages) but when the fistula popped up he went with remicade.
I have to say it was great, after my first 3 doses I felt like normal, I still watched my diet, but I had normal bowel movements, no abdominal pain. I felt normal for the first time in 2 years.
A few months later, in November, I find out I am 18 weeks pregnant. Luckily Remicade is safe to take during pregnancy, and my doc said the risks of a flare during pregnancy are greater that any risk that the drug may pose.
I had a good pregnancy flare-free. I had a C-section in April 2010, not because of the crohn's I was late, and I didn't want to induce. Plus I had a small (okay large) fear of tearing and with all the problems with the fistula and abscess the previous year, I didn't want to create additional problems.
I continued the remicade after pregnancy, In June I developed an anal fissure, these are very painful, I couldn't use much of the hydrocortisone creams because I was nursing. But I never would have thought but sitz baths really do go a long way, I really restricted my diet so I was going to the bathroom the least amount of times per day as possible (only 1-2 times in the morning) and doing sitz baths 2 times a day. The fissure seemed to pretty much subside.
In July of this year, my husband's job transferred him to Philadelphia, PA, we had lived in Phoenix, AZ. All of my family is in Phoenix, it was hard to loose my support system.
When we first got here, I was pretty much due for my next remicade infusion by the end of that month, but I had trouble finding a doctor that could get me in soon enough, I didn't end up getting my remicade until late August which put me a month late, by this time, I was back to multiple trips to the bathroom, my fissure was acting up (and it is hard taking care of a 5 month old when it hurts to sit), i was having abdominal pain and my appetite was dwindling away. I got my remicade and was great until about 2 weeks later, I spiked a fever and was sick over the weekend, from that point on it was like before, I couldn't figure it out, I ended up getting my next remicade dose early. But again, 2 weeks later I spiked a fever and got sick for a few days and went back to the way I was. I also just getting over a reflux episode, I had pain in the back of my throat down my throat when I swallowed, I couldn't stop burping, and I had pain and sores in my mouth and on my tongue. I couldn't eat, I lost like 12 pounds in 2 weeks.
This is where I am now, the trips to the bathroom have gotten a little better, but mostly everything I eat, even if it is crohn's friendly, makes my stomach hurt, I do okay in the afternoon but am waking up at least 2-3 times during the night to run to the bathroom. At least my mouth is feeling better and I can eat again.
I thought I had found a good doc here in the Philly area, but he was of no help to me this past month, every time I would call the office person would return my call and I couldn't answer so we were playing phone tag, and in the past my calls never actually made it to my doctor and I finally tried to just make an appointment and he didn't have any openings until JANUARY. I need help now, not 2 months from now. I will be wasted away to nothing by then or in the hospital. I found another doctor, and I go see him Friday this week. hopefully he can figure out what is going on. I know something is not right.
I have Crohn's, reflux, and perianal disease. I feel lucky that I haven't had to have any major resection surgeries. So far treatments have worked well for me, I know it could be worse, but this disease doesn't make everyday any easier. I am glad to have a loving husband and a healthy child.
My name is Jayme. I was diagnosed with Crohn's Feb 2009, but had symptoms since Dec 2007.
The first year was hard, I didn't know what was going on. The symptoms would come and go, so I originally blamed the bowel problems on a lactose sensitivity because it runs in my family. That spring of 2008 my feet began to swell for no reason and I developed the painful red nodes all over my lower legs, I went to my primary doc, they couldn't figure it out. She sent me to a Rheumatologist who diagnosed me with erythema nodosum, he gave me some meds that cleared it up but didn't know what was causing it, he ultimately thought that it was my birth control, so I switched brands and still no help, At that point I quit going to see him. At this point I had also lost about 20-25 pounds without even trying.
I think I began flaring again around Christmas 2008, I was going to the bathroom 10+ times a day. I couldn't hold in even the blandest of foods, I would be bedridden with abdominal pain, I would have to ball up into the fetal position and that was the only way I could relieve some of the pain. I was anemic, had a B12 deficiency and barely had any energy to to walk from the living room to the bedroom. I talked with husband, my parents and some friends and finally went to a Gastro doc early 2009, he immediately scheduled a colonoscopy and was diagnosed after that.
My doc was great, he went through everything with me in great detail gave me all my treatment options and talked me through each one.
I started on the least aggressive treatment. I was on Pentasa 200mg 4x a day plus Entocort , I don't remember the exact dosage but it was 3 times a day. At that point I was thinking about if this is what my life is going to be from now on, 10+ pills everyday? Then that mixture was working and now my legs were starting to swell again, and we found out that the erythema nodosum was an indicator that I was about to start flaring, which was what was starting to happen again. During this whole period I had lost and additional 45-50 pounds.So my doc then switched me to prednisone. THE WORST DRUG EVER (horrible side effects). I was at 40mg a day, I have to say it did work, I was for the most part symptom free, my legs cleared up within a week. I was still taking the Pentasa, my doc wanted to keep me on it for maintenance so I could eventually taper off the prednisone. I was doing good, and so my doctor started tapering me off the prednisone, I did fine till I hit about 10mg a day, then I started noticing symptoms creeping back up. Also at this point a new problem had popped up, because of the prednisone I had developed a perianal abscess and fistula. I originally just thought it was hemorrhoids, but this pain was different, I went to my primary care, because my GI was out of the office, and she got me in to a colorectal surgeon that day. They scheduled the draining of the abscess for the next day. At this point I could barely walk, I couldn't sit, the only comfortable position was laying on my left side, even that was still a little painful, good thing I had vicodin, but the morning of the surgery I was told I couldn't take my pain meds, then when I got to the hospital after being in excruciating pain all morning the anesthesiologist told me I could have taken them, but then he gave me a little morphine and I was okay. The surgery was fairly easy and quick, the recovery not too bad.
But I still had the fistula and now my doc really wanted me off prednisone so I decrease the risk of developing another abscess. He then put me on Remicade, we were originally talking Cimzia or maybe Humira (depending on insurance coverages) but when the fistula popped up he went with remicade.
I have to say it was great, after my first 3 doses I felt like normal, I still watched my diet, but I had normal bowel movements, no abdominal pain. I felt normal for the first time in 2 years.
A few months later, in November, I find out I am 18 weeks pregnant. Luckily Remicade is safe to take during pregnancy, and my doc said the risks of a flare during pregnancy are greater that any risk that the drug may pose.
I had a good pregnancy flare-free. I had a C-section in April 2010, not because of the crohn's I was late, and I didn't want to induce. Plus I had a small (okay large) fear of tearing and with all the problems with the fistula and abscess the previous year, I didn't want to create additional problems.
I continued the remicade after pregnancy, In June I developed an anal fissure, these are very painful, I couldn't use much of the hydrocortisone creams because I was nursing. But I never would have thought but sitz baths really do go a long way, I really restricted my diet so I was going to the bathroom the least amount of times per day as possible (only 1-2 times in the morning) and doing sitz baths 2 times a day. The fissure seemed to pretty much subside.
In July of this year, my husband's job transferred him to Philadelphia, PA, we had lived in Phoenix, AZ. All of my family is in Phoenix, it was hard to loose my support system.
When we first got here, I was pretty much due for my next remicade infusion by the end of that month, but I had trouble finding a doctor that could get me in soon enough, I didn't end up getting my remicade until late August which put me a month late, by this time, I was back to multiple trips to the bathroom, my fissure was acting up (and it is hard taking care of a 5 month old when it hurts to sit), i was having abdominal pain and my appetite was dwindling away. I got my remicade and was great until about 2 weeks later, I spiked a fever and was sick over the weekend, from that point on it was like before, I couldn't figure it out, I ended up getting my next remicade dose early. But again, 2 weeks later I spiked a fever and got sick for a few days and went back to the way I was. I also just getting over a reflux episode, I had pain in the back of my throat down my throat when I swallowed, I couldn't stop burping, and I had pain and sores in my mouth and on my tongue. I couldn't eat, I lost like 12 pounds in 2 weeks.
This is where I am now, the trips to the bathroom have gotten a little better, but mostly everything I eat, even if it is crohn's friendly, makes my stomach hurt, I do okay in the afternoon but am waking up at least 2-3 times during the night to run to the bathroom. At least my mouth is feeling better and I can eat again.
I thought I had found a good doc here in the Philly area, but he was of no help to me this past month, every time I would call the office person would return my call and I couldn't answer so we were playing phone tag, and in the past my calls never actually made it to my doctor and I finally tried to just make an appointment and he didn't have any openings until JANUARY. I need help now, not 2 months from now. I will be wasted away to nothing by then or in the hospital. I found another doctor, and I go see him Friday this week. hopefully he can figure out what is going on. I know something is not right.
I have Crohn's, reflux, and perianal disease. I feel lucky that I haven't had to have any major resection surgeries. So far treatments have worked well for me, I know it could be worse, but this disease doesn't make everyday any easier. I am glad to have a loving husband and a healthy child.
!! I'm not sure I could. That's awful that you were doing so well until you couldn't find a doc to administer your Remi on time. I hope Friday goes well for you. Good luck!!!
