Hello friends!
My name is Nicole, I'm 23, and I have moderate Crohn's Disease.
I've always had issues with my health. I've had severe asthma, eczema, and allergies since i was a baby, and being heavily medicated and hospitalized is nothing new to me. When I was diagnosed with moderate Crohn's Disease February of this year (2014) it was like nothing I've experienced before.
I've always had trouble with my BM's and I was never regular, I just thought it was a result of always being on different medications and steroids from all my health issues. During the winter of 2013, one morning I was showering and I noticed that "down there" (where the sun don't shine) felt a little sore. I thought it was just an ingrown hair or a pimple forming. I left it alone, and after about a month it had grown in size and became more painful. I noticed that whenever I went to the bathroom and had a BM, the bump got larger. Depending on how that BM went, the bump would swell even for about two days. Keep in mind, that during this time I didn't have any health insurance. Seeing as I wasn't working and had no health insurance, I ignored the weird bump and dealt with the awkward pain. Over the next year, the bump grew and I found ways to cope with the pain by choosing not to wear underwear, sat on padded surfaces only, and stuck with sweatpants whenever I could.
On two occasions the pain got so bad that I decided to go to an urgent care walk in center, and another time I went to planned parenthood. Both times they told me it was a Boyle and if I sat in hot salt water baths, it should drain when it's ready. I would take two to sometimes 3 baths a day and dumped a ton of salt into each one...it wasn't working!
I started working May of 2013 at a job I love, and I finally got health insurance in September of 2013 (the best birthday present I could have asked for). I started seeing an OBGYN, and I brought to her attention the bump "down there" I let her know I was told it was a Boyle, but it wasn't healing or draining despite all the salt baths I was taking. She prescribed me some ointment, and antibiotics that would hopefully help heal this "alien" as I started calling it :lol: The antibiotics gave me an allergic reaction, and the ointment (which i was applying liberally) didn't seem like it was working.
One morning I woke up and my "alien" was HUGE! Bigger than it had ever been. I called out of work and sat in my salt bath for about an hour. After my bath I was looking at the bump with a hand held mirror and it looked like it was finally coming to a head! I was elated as I ran to my bathroom with paper towels and my mirror. IT FINALLY DRAINED! I was so relieved, and the bump got incredibly smaller in size. I followed up with my OBGYN in the next 3 days and let her know of the good news. She instructed me to keep taking the baths and keep using the ointment to get rid of any infection. I did as i was told...but after a month of this regimen, it was still draining (especially when I would have a BM) so I followed up with my OBGYN. Now that the swelling was gone, when my doctor was inspecting and pushing on the skin around the area of my "alien" she felt under my skin that there was a "connection" going from my "alien" to either my anal canal, or vagina. I WAS SO CONFUSED! What in the world did that mean?! She recommended me to a Colon Rectal Surgeon, and said she thought it was a fistula. I made an appointment with the CRS and sure enough my OBGYN was right. January 5, 2014 I had my first colonoscopy (I cried until I knocked out from the medication) and when I woke up (loopy and still crying) my CRS told me I had Crohn's Disease, and she had placed a C-Ton in the anal fistula to let it drain. I had to follow up with her the next day over the phone because I couldn't remember much after waking up.
When I looked in the mirror at the C-Ton I had a mental break down. What was that rubber band doing there, and where was it leading to?! I spoke to my CRS over the phone and she explained everything to me from what a C-Ton was, to what a fistula was. She explained that I would have to see a Gastro to get started on medication to get my Crohn's Disease under control, and to heal my fistula. After almost four months of having the C-ton in place I started Humira, and my CRS removed the C-Ton.
After taking my starter dose of Humira (4 starter shots in the stomach) three weeks later I followed up with my CRS and she said the fistula was healing,and it was no longer draining! I couldn't have been happier. I continued taking my Humira every two weeks.
Fast forward 3 months to today...
The past month I feel my Humira has not had the same effect as it did the past two months. My fistula started draining again, and my bathroom trips are starting to become more painful. I saw my Gastro today and let him know that I don't feel the same as when I started Humira, and he let me know that I will have to give myself a shot weekly instead of biweekly now. I'm ok with that if it will help.
I have had trouble identifying my triggers, and have started keeping a journal of what I eat and how I feel. I have also been looking into Holistic Nutrition, seeing if I could find a nutritionist near me. Does anyone have any advice regarding Holistic Nutrition? What do you do when you're having a flare up? What helps you?
This has been an uphill battle for the past year and a half, and I'm trying to find the light at the end of the tunnel. I'm not there yet, but hopefully one day I will be.
Peace and Love
My name is Nicole, I'm 23, and I have moderate Crohn's Disease.
I've always had issues with my health. I've had severe asthma, eczema, and allergies since i was a baby, and being heavily medicated and hospitalized is nothing new to me. When I was diagnosed with moderate Crohn's Disease February of this year (2014) it was like nothing I've experienced before.
I've always had trouble with my BM's and I was never regular, I just thought it was a result of always being on different medications and steroids from all my health issues. During the winter of 2013, one morning I was showering and I noticed that "down there" (where the sun don't shine) felt a little sore. I thought it was just an ingrown hair or a pimple forming. I left it alone, and after about a month it had grown in size and became more painful. I noticed that whenever I went to the bathroom and had a BM, the bump got larger. Depending on how that BM went, the bump would swell even for about two days. Keep in mind, that during this time I didn't have any health insurance. Seeing as I wasn't working and had no health insurance, I ignored the weird bump and dealt with the awkward pain. Over the next year, the bump grew and I found ways to cope with the pain by choosing not to wear underwear, sat on padded surfaces only, and stuck with sweatpants whenever I could.
On two occasions the pain got so bad that I decided to go to an urgent care walk in center, and another time I went to planned parenthood. Both times they told me it was a Boyle and if I sat in hot salt water baths, it should drain when it's ready. I would take two to sometimes 3 baths a day and dumped a ton of salt into each one...it wasn't working!
I started working May of 2013 at a job I love, and I finally got health insurance in September of 2013 (the best birthday present I could have asked for). I started seeing an OBGYN, and I brought to her attention the bump "down there" I let her know I was told it was a Boyle, but it wasn't healing or draining despite all the salt baths I was taking. She prescribed me some ointment, and antibiotics that would hopefully help heal this "alien" as I started calling it :lol: The antibiotics gave me an allergic reaction, and the ointment (which i was applying liberally) didn't seem like it was working.
One morning I woke up and my "alien" was HUGE! Bigger than it had ever been. I called out of work and sat in my salt bath for about an hour. After my bath I was looking at the bump with a hand held mirror and it looked like it was finally coming to a head! I was elated as I ran to my bathroom with paper towels and my mirror. IT FINALLY DRAINED! I was so relieved, and the bump got incredibly smaller in size. I followed up with my OBGYN in the next 3 days and let her know of the good news. She instructed me to keep taking the baths and keep using the ointment to get rid of any infection. I did as i was told...but after a month of this regimen, it was still draining (especially when I would have a BM) so I followed up with my OBGYN. Now that the swelling was gone, when my doctor was inspecting and pushing on the skin around the area of my "alien" she felt under my skin that there was a "connection" going from my "alien" to either my anal canal, or vagina. I WAS SO CONFUSED! What in the world did that mean?! She recommended me to a Colon Rectal Surgeon, and said she thought it was a fistula. I made an appointment with the CRS and sure enough my OBGYN was right. January 5, 2014 I had my first colonoscopy (I cried until I knocked out from the medication) and when I woke up (loopy and still crying) my CRS told me I had Crohn's Disease, and she had placed a C-Ton in the anal fistula to let it drain. I had to follow up with her the next day over the phone because I couldn't remember much after waking up.
When I looked in the mirror at the C-Ton I had a mental break down. What was that rubber band doing there, and where was it leading to?! I spoke to my CRS over the phone and she explained everything to me from what a C-Ton was, to what a fistula was. She explained that I would have to see a Gastro to get started on medication to get my Crohn's Disease under control, and to heal my fistula. After almost four months of having the C-ton in place I started Humira, and my CRS removed the C-Ton.
After taking my starter dose of Humira (4 starter shots in the stomach) three weeks later I followed up with my CRS and she said the fistula was healing,and it was no longer draining! I couldn't have been happier. I continued taking my Humira every two weeks.
Fast forward 3 months to today...
The past month I feel my Humira has not had the same effect as it did the past two months. My fistula started draining again, and my bathroom trips are starting to become more painful. I saw my Gastro today and let him know that I don't feel the same as when I started Humira, and he let me know that I will have to give myself a shot weekly instead of biweekly now. I'm ok with that if it will help.
I have had trouble identifying my triggers, and have started keeping a journal of what I eat and how I feel. I have also been looking into Holistic Nutrition, seeing if I could find a nutritionist near me. Does anyone have any advice regarding Holistic Nutrition? What do you do when you're having a flare up? What helps you?
This has been an uphill battle for the past year and a half, and I'm trying to find the light at the end of the tunnel. I'm not there yet, but hopefully one day I will be.
Peace and Love
