Hey everyone! I stumbled across this website last night while just browsing looking at different websites. It is nice to have a place to go to where everyone is experiencing somewhat of the same problems. I am 28 years old, married to an amazing and loving man, and a mother to a toddler (2 1/2 with an attitude) that is the light of my life.
Well, my story begins in 2007 when I got pregnant with my daughter. I had horrible rectal bleeding and was ultimately diagnosed with UC. I kept everything under control until January of 2010. That's when all hell broke loose
It was almost like I got sick over night, and not just sick, but really really sick. I stayed in my bed for 2 weeks bc I litteraly couldn't move. I was seeing a GI doctor that came highly recommended to me and at first, I really liked. He seemed very concerned and very knowledgeable. My inital CRP that was done was almost 300!! (CRP indicates inflamatin and normal is in the single digits) Anyway, my colonoscopy indicated that I had sever UC that went from my rectum to my ileum and effected essentially the entire thing. He told me that I had numerous ulcers and they were quite severe. I guess that explained the blood, pain, and diarrhea. Now...what were we going to do to fix it?? I went on Prednisone immediately (40mg) and was told to try to stay hydrated. Well, on 40mg I still had bleeding, pain, dirrhea, and fatigue. So what did my GI doc do? He decreased the dosage of Prednisone. He told me he didn't want me on high doses for long periods of time so he continued to decrease it. That was quite confusing to me since I wasn't getting better. I forgot to mention that I am a nurse and know a bit more than the average person so when he decided to decrease my medicine when my labs were continuously getting worse and my symptoms weren't getting better, I was dumb founded. Everyone - friends, family, co-workers - all urged me to get a second opinion and see another doctor. I agreed, but for some reason, I never did. Well, not at that time anyway. Anyway, I started on Remicade at the end of Feb and continued to decrease my Prednisone dose. At my first Remicade treatment, the nurses administering it, were quite concerned at my appearance and state. They said I was one of the worst they had ever seen getting Remicade (of course they didn't tell me this til later). Before I got sick, I weighed 160lbs and at my worst of being sick, I dropped down to 130lbs, which was all in about 2 months. I dropped 30lbs in 2 months!! And I was eating...it just wouldn't stay in! So, I did the Remicade and continued the Prednisone with no avail. All I wanted to know was why I was still so sick and in SO much pain. The pain was horrible It truely was dibilitating. My GI gave me Percocet and told me not to be afraid to take them, that would help them most. So, I listened and took the pain meds. I took them for so long that I started to get use to them, that's when I knew I had to do something. And every time I asked why I was still in so much pain and had bleeding, I was told that I was just so sick it was going to take a while for me to get better. I know they told me that a dozen times at least. I felt like they didn't know what to tell me or why I was still sick and they didn't really know where to go from here.
Well, about that time, that's when the fevers started. Mid March was the first fever of 104.5. I immediately went to the ER and was given antibiotics, told to take Tylenol, call and make an appt with my family doctor, and sent home. WTH?? I was sick and it seemed like nobody was doing anything! But, as a good little patient, I did as I was told. When I called my GI doctor the next day to tell him about the fever, he told me it was probably a secondary infection and to call my family doctor, so I did. I went and saw my family doc and he was appauled at the state I was in. He did some lab work and found that my hemaglobin was 7.2 (significantly low). Oh, on a side note...my hemaglobin was 8 when my GI doc tested it and told me to just take iron instead of doing a transfusion, even though I was symptomatic. So, that was the first of 3 blood transfusions I received within 2 months. The next was 2 weeks later bc my hemaglobin continued to drop so drastically and I would become severly anemic. So my second fever came at the end of March, again 104. I went to the ER and had the same experience. Antibiotics, pain meds, make appt, go home. I was so frustrated now. But not nearly as frustrated as my husband! So, I called the GI the next day and was told the same thing, go see primary care doc. For two months I had the same questions and got the same answers and they were not helping. So, went to primary care and had the same scenario, more blood. Then, the following week, my parents came from Florida to visit and see if they could help me. Thank goodness they came when they did bc the worst of the fevers was about to show itself. Before I went to bed, I had a fever of 103 but refused to go to the hospital bc I knew what was going to happen and I didn't want to waste my time. I took some Tylenol and went to bed. Well, I woke up about 530am and knew something was terribly wrong. I took my temp and it was 105.3! That is definitely NOT a good thing for an adult; that's brain damage territory. So I called my mother (my husband was at work) and her and my dad took me to the ER. This time, not only was my temp extremely high but my pulse was soaring (160) and my BP was dropping (90/50). Needless to say, I was going into shock bc I was severly septic. My colon had so many ulcers that were so bad, stool was leaking into my blood stream through all the blood vessels that were damaged. I got admitted to CCU and given massive amts of steriods and antibiotics.
That is when I met my angel...the man that saved my life. The GI doctor that took care of me was completely opposite of my previous GI doctor. He treated aggressively and then once I was better, attempted to decrease. I was on 60mg of Prednisone for about 4 weeks until my pain, bleeding, and other symptoms disappeared. Oh, another side note, I got my chart from my first GI doc and was appauled with what I read. He made me seem like a drug seeker that just didn't want to work when the opposite is true; all I wanted to do was get back to work. Anyway, I was in the hospital for 5 days and was told that I was a very lucky girl to be walking out of there alive. That scared me! I have a 2 1/2 y/o little girl that needs her mommy. To this day it makes me cry to think I almost left her without a mommy. That was the day that I determined I was not going to let this beat me!!
We tried every treatment available to me (except drinking the worms...I didn't go there.) I was still on Prednisone (couldn't get below 30mg w/o bleeding again), still getting Remicade, tried Azothiaprine (horrible reflux), and took 6MP for a while (lost my hair). That's not to mention the other handful of meds that I was taking (like 1000mg of iron a day!). Well, after trying all of these medicines for months and not having the results I was hoping for, I decided that surgery was my best option. These medicines, though keeping some of my symptoms at bay, were killing me in a different way. I had gained 50lbs back from the Prednisone (in about 6 weeks), the Remicade and 6MP killed my immune system, and I was going bald from the 6MP. And the worst part was, I was STILL bleeding and having ulcers. I was done...emotionally and physically.
So in July I went and met with the surgeon and my surgery date was set for Sept 27th. In July, this date seemed SO far away...but eerily close. I went through all the emotions; am I making the right decision? Is this really what I want? Is there anything else I should try? I got mad, I was sad, I was ok, I was in denial...I ran the gammit but in the end, I knew this is what I had to do. So surgery day came and everything went perfect. In fact, he said the surgery would take 6-8 hrs but it only ended up taking 4 bc everything went so well. The surgeon told my family and I that this was the best decision bc my colon was destroyed. He said it was one of the worst he's ever seen (and he's been doing this for about 20 yrs). So, I had my entire colon removed and a temporary ileostomy placed.
When I woke up from surgery, I immediately hated that I had this thing (the disease) and was very resentful that this happened to me. It took a bit of getting used to but I am much better now I ended up having some complications and going in for a second surgery (worst part is, my second surgery was the day I was supposed to go home). I am about 4 weeks post op and still getting use to my ostomy but am doing pretty good. My husband has been completely supportive and the most amazing man I could ever imagine. He is so non medical it's rediculous but he has stepped up and changed my dressing in the beginning (had to have packing and wet to dry dressing changes twice a day; which was horrible) and really has done wonderful with helping my change my bag. I am still not able to do it myself so he helps me out. I have had numerous mishaps with my bag and even had horrible skin breakdown around my stoma bc stool was getting under the waffer but we are doing better with it now bc I have switched to a convex bag.
Well, that's my story. I know it's long and involved but it will soon be over! I get my reversal sometime next year (depending on insurance). Right now I'm concentrating on life with Rosy (my stoma) and adapting to the changes.
I thank you for whom ever started this site bc it is extremely helpful for people like me who are just getting started with a stoma and need the support and advise!!
Well, my story begins in 2007 when I got pregnant with my daughter. I had horrible rectal bleeding and was ultimately diagnosed with UC. I kept everything under control until January of 2010. That's when all hell broke loose
It was almost like I got sick over night, and not just sick, but really really sick. I stayed in my bed for 2 weeks bc I litteraly couldn't move. I was seeing a GI doctor that came highly recommended to me and at first, I really liked. He seemed very concerned and very knowledgeable. My inital CRP that was done was almost 300!! (CRP indicates inflamatin and normal is in the single digits) Anyway, my colonoscopy indicated that I had sever UC that went from my rectum to my ileum and effected essentially the entire thing. He told me that I had numerous ulcers and they were quite severe. I guess that explained the blood, pain, and diarrhea. Now...what were we going to do to fix it?? I went on Prednisone immediately (40mg) and was told to try to stay hydrated. Well, on 40mg I still had bleeding, pain, dirrhea, and fatigue. So what did my GI doc do? He decreased the dosage of Prednisone. He told me he didn't want me on high doses for long periods of time so he continued to decrease it. That was quite confusing to me since I wasn't getting better. I forgot to mention that I am a nurse and know a bit more than the average person so when he decided to decrease my medicine when my labs were continuously getting worse and my symptoms weren't getting better, I was dumb founded. Everyone - friends, family, co-workers - all urged me to get a second opinion and see another doctor. I agreed, but for some reason, I never did. Well, not at that time anyway. Anyway, I started on Remicade at the end of Feb and continued to decrease my Prednisone dose. At my first Remicade treatment, the nurses administering it, were quite concerned at my appearance and state. They said I was one of the worst they had ever seen getting Remicade (of course they didn't tell me this til later). Before I got sick, I weighed 160lbs and at my worst of being sick, I dropped down to 130lbs, which was all in about 2 months. I dropped 30lbs in 2 months!! And I was eating...it just wouldn't stay in! So, I did the Remicade and continued the Prednisone with no avail. All I wanted to know was why I was still so sick and in SO much pain. The pain was horrible It truely was dibilitating. My GI gave me Percocet and told me not to be afraid to take them, that would help them most. So, I listened and took the pain meds. I took them for so long that I started to get use to them, that's when I knew I had to do something. And every time I asked why I was still in so much pain and had bleeding, I was told that I was just so sick it was going to take a while for me to get better. I know they told me that a dozen times at least. I felt like they didn't know what to tell me or why I was still sick and they didn't really know where to go from here. Well, about that time, that's when the fevers started. Mid March was the first fever of 104.5. I immediately went to the ER and was given antibiotics, told to take Tylenol, call and make an appt with my family doctor, and sent home. WTH?? I was sick and it seemed like nobody was doing anything! But, as a good little patient, I did as I was told. When I called my GI doctor the next day to tell him about the fever, he told me it was probably a secondary infection and to call my family doctor, so I did. I went and saw my family doc and he was appauled at the state I was in. He did some lab work and found that my hemaglobin was 7.2 (significantly low). Oh, on a side note...my hemaglobin was 8 when my GI doc tested it and told me to just take iron instead of doing a transfusion, even though I was symptomatic. So, that was the first of 3 blood transfusions I received within 2 months. The next was 2 weeks later bc my hemaglobin continued to drop so drastically and I would become severly anemic. So my second fever came at the end of March, again 104. I went to the ER and had the same experience. Antibiotics, pain meds, make appt, go home. I was so frustrated now. But not nearly as frustrated as my husband! So, I called the GI the next day and was told the same thing, go see primary care doc. For two months I had the same questions and got the same answers and they were not helping. So, went to primary care and had the same scenario, more blood. Then, the following week, my parents came from Florida to visit and see if they could help me. Thank goodness they came when they did bc the worst of the fevers was about to show itself. Before I went to bed, I had a fever of 103 but refused to go to the hospital bc I knew what was going to happen and I didn't want to waste my time. I took some Tylenol and went to bed. Well, I woke up about 530am and knew something was terribly wrong. I took my temp and it was 105.3! That is definitely NOT a good thing for an adult; that's brain damage territory. So I called my mother (my husband was at work) and her and my dad took me to the ER. This time, not only was my temp extremely high but my pulse was soaring (160) and my BP was dropping (90/50). Needless to say, I was going into shock bc I was severly septic. My colon had so many ulcers that were so bad, stool was leaking into my blood stream through all the blood vessels that were damaged. I got admitted to CCU and given massive amts of steriods and antibiotics.
That is when I met my angel...the man that saved my life. The GI doctor that took care of me was completely opposite of my previous GI doctor. He treated aggressively and then once I was better, attempted to decrease. I was on 60mg of Prednisone for about 4 weeks until my pain, bleeding, and other symptoms disappeared. Oh, another side note, I got my chart from my first GI doc and was appauled with what I read. He made me seem like a drug seeker that just didn't want to work when the opposite is true; all I wanted to do was get back to work. Anyway, I was in the hospital for 5 days and was told that I was a very lucky girl to be walking out of there alive. That scared me! I have a 2 1/2 y/o little girl that needs her mommy. To this day it makes me cry to think I almost left her without a mommy. That was the day that I determined I was not going to let this beat me!!
We tried every treatment available to me (except drinking the worms...I didn't go there.) I was still on Prednisone (couldn't get below 30mg w/o bleeding again), still getting Remicade, tried Azothiaprine (horrible reflux), and took 6MP for a while (lost my hair). That's not to mention the other handful of meds that I was taking (like 1000mg of iron a day!). Well, after trying all of these medicines for months and not having the results I was hoping for, I decided that surgery was my best option. These medicines, though keeping some of my symptoms at bay, were killing me in a different way. I had gained 50lbs back from the Prednisone (in about 6 weeks), the Remicade and 6MP killed my immune system, and I was going bald from the 6MP. And the worst part was, I was STILL bleeding and having ulcers. I was done...emotionally and physically.
So in July I went and met with the surgeon and my surgery date was set for Sept 27th. In July, this date seemed SO far away...but eerily close. I went through all the emotions; am I making the right decision? Is this really what I want? Is there anything else I should try? I got mad, I was sad, I was ok, I was in denial...I ran the gammit but in the end, I knew this is what I had to do. So surgery day came and everything went perfect. In fact, he said the surgery would take 6-8 hrs but it only ended up taking 4 bc everything went so well. The surgeon told my family and I that this was the best decision bc my colon was destroyed. He said it was one of the worst he's ever seen (and he's been doing this for about 20 yrs). So, I had my entire colon removed and a temporary ileostomy placed.
When I woke up from surgery, I immediately hated that I had this thing (the disease) and was very resentful that this happened to me. It took a bit of getting used to but I am much better now
I ended up having some complications and going in for a second surgery (worst part is, my second surgery was the day I was supposed to go home). I am about 4 weeks post op and still getting use to my ostomy but am doing pretty good. My husband has been completely supportive and the most amazing man I could ever imagine. He is so non medical it's rediculous but he has stepped up and changed my dressing in the beginning (had to have packing and wet to dry dressing changes twice a day; which was horrible) and really has done wonderful with helping my change my bag. I am still not able to do it myself so he helps me out. I have had numerous mishaps with my bag and even had horrible skin breakdown around my stoma bc stool was getting under the waffer but we are doing better with it now bc I have switched to a convex bag. Well, that's my story. I know it's long and involved but it will soon be over! I get my reversal sometime next year (depending on insurance). Right now I'm concentrating on life with Rosy (my stoma) and adapting to the changes.
I thank you for whom ever started this site bc it is extremely helpful for people like me who are just getting started with a stoma and need the support and advise!!
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