Posted 3/10/2016 10:43 PM (GMT 0)
Hello my name is Patrick my nickname is Pete, I am a modern Viking, so Viking Pete is my alias that is another story.
I was diagnosed with crohns at 10 years of age. I was in 5th grade, I was small and weak as it was. I was always a skinny child. I started having trouble using the toilet such as constipation. We went to cooks children's hospital we spent a lot of time there. My parents started worrying how they were going to pay for all this, someone had them call medicaid and was able to get me on that program as well as disability. If they hadn't don't that I don't think i'd have been able to get on it now as a 24 year old adult male.
I missed 3 months of school with all that testing, so my parents decided to hold me back. The next year was even more tough. I was having to take 20+ pills and went onto prednisone. This made me chubby and a lot of cloths no longer fit me. I was short already from part genetics and part not eating well as a child. I started having diarrhea and would miss about every other day of class or I'd make a week then miss a week. I made it about half the year in total for my second year of 5th grade.
In 6th grade they put me into the HomeBound program I was still not doing that well on my meds I had cramping and pain but it became normal to me. I spent most of my time at home, I sometimes played with friends but didn't feel well all the time. I would lie to them and tell them I was grounded. I've never been grounded a day in my life. I hated doing that but I felt like crap. I made it about a month total to actual school the rest of my schooling was done with the mentioned program. A teacher would come to my house ever Tuesday and Thursday and spend 3 hours with me. We went over the basics not all that repetitive fill in stuff.
My next school year the school decided that I would have to come into the school on those days after school for reasons unbeknownst to me. This was hard very hard on me and my mom at the time. We were poor we lived off my SSI my mom had no way to have a job and we had no car. We had to use my grandmas Van she used for work on the weekends. I was doing a bit worse at this time and was having urgency problems. I started having accidents here and there where if I didn't make it to the toilet within about 30 seconds I was painting the floors. I made a point to make it to the first day of school. That was all I made. It saddens me that I couldn't make it to school. I also suffered from insomnia but when I did fall asleep I would sleep 10 hours and when I'd wake up would have to make a mad dash to the toilet. I never messed the bed and never work up to use the toilet.
8th grade the school sent us a letter telling us they were changing the program again the teacher no longer wanted to work with me. Its not like I was a hard student, I just wanted a friends as at this time only had 2 but they were so much younger than me. Maybe he felt I didn't want to focus on class enough or something. I struggled with him at times as I was not always of capable mind being so sick. So my mom took me out of school we decided we would do home schooling. We soon learned it was expensive. The books cost too much money and the online home schooling programs cost too much.
I wanted a computer so I sold all my old toys and bought my First MacBook it was the best day in my life for a long time. I loved computers and this was a dream come true. I could't really play with my toys anymore. This set me into a new path. Anyway by summer we had issues. My Cooks GI doctor stopped taking my insurance so we had to change insurance. I was on Amerigroup Medicaid. My mom switched it to traditional Medicaid and then they set me up with a baby doctor. We went to the appointment and they told us I was too old to see the Doctor I just ran out of medication and now we couldn't get a referral.
Mom called and called a month later we got another doctor turned out it was a sports doctor. So she called and called again. By now I spent all my time on the couch. My friends didn't hear from me they thought I died. I felt like I was dying I was in agonizing pain every day I went to the bathroom 30 times a day was always constipated. I would sit in the bath tub for 5 hours a day trying to sooth my insides. My skin issues cleared up. I had rashes behind my ears, around my nose, and crotch. I have suffered from rashes on my private where I was circumcised since I was born "I have had many problems from being circumcised I wish I had never been butchered". The water cleared it all up no doctor was able to clear them up and id suffered from psoriasis for 2 years constantly before this.
After several months and several ER visit one being on 7/7/07 That was quite a day on the way to Cook's ER I got to watch fireworks go off. All the ER's would do was tell me they couldn't do anything but give me fluids and send me home. Every time I walked in they would immediately bring me back and admit me.No matter how full the ER was they would immediately bring me back. That speaks mountains.
Finally we got a Primary Care Doctor and this was the best Doctor Ive ever had. He gave me the referral I needed and within two weeks we saw my Cooks GI Doctor. He wanted a colonoscopy and refiled my previous meds. Two weeks later we did the prep which is biased. They always prescribe too much prep especially for someone who at the time barely ate let alone at time was eating almost nothing each day. So the next day we got to the hospital and the Anesthesiologist did his consult. He left and came back and said they are admitting me to the hospital he was afraid to put me under. I started bawling I was so emotionally unstable and at the time was scared of hospitals.
The Crohns doctor oversaw my stay and said my body had went into starvation mode. At the time I was on asacol, 6mp, zinc, Prevacid, calcium and my asthma stuff. So they put me on Potassium and Prednisone. Within two days I stated to like it there and started to eat and I got to have extra food. My menu was high protein High calorie. Which my options included chicken I loved chicken so I would get chicken and potatoes and diced peaches and other stuff. I was there a week. The first day when they came in to give me my 6Mp they wore hazmat suits. This shocked us, we asked and they said well we need to see how his body reacts to the 6mp before we clear him. My mom said I've been giving him this pill by had for 4 years now. She became worried that it may have harmed her she didn't know it was unsafe to handle.
So I was put on room restriction I wasn't allowed to leave my room it took them all week to clear me in fact every visit at cooks i was on lock down for some reason so I never got to be free there. But they made my lock down fun I got to have games, puzzles and people came to my room and put on a level one hazmat suit. I got home it was autumn 2007 and a few days later a Social Worker showed up at our house from Child Protective Services. She asked us lots of questions and told us to go to the harvest house. She set us up on food stamps and learned my mom was not at fault. The lady even brought me a video game to play.
The doctor started me on remicade and switched the 6mp to methotrexate which for the first few months seemed to bring great improvement in my condition but after that I started going back down. Within a year I was hospitalized again and my skin issues came back. The next year same deal but this time I had an abscess on my butt that had MRSA. I was hospitalized to have me put under so they could drain it. By Christmas they decided to Switch me to Humira so my first injections were going to be done on my Birthday the 31st of December 2009. They put me back on prednisone to help the transition. During my highest health point on the steroid's I would start having solid ish bm's and less frequency but nothing ever seemed to help much.
After 6 months I started to decline again so they switched my 6mp to injection methotrexate after a month I stated getting very ill after each shot. I stated having really bad Psoriasis so the doctor decided to up my doses to every week for both shots. Within a month I got to where I was sick all week so my mom asked them to stop the methotrexate. I kept declining and getting worse again. The doctor suggested I should start looking for an adult doctor. As they have more options. After my last hospitalization in 2011 where I was in cooks for 10 days and on prenatal nutrition. We switched me to a doctor he recommended.
So we get there and that doctor was not available do I seen a nurse practitioner, she said I was on too high a does of humira and took it down. I asked her to put me on Budesonide she said that drug is not in their network and could not prescribe it. Instead she put me on imuran. Almost a year passes and I'm still declining. I left a pen out too long so I looked up how long was safe and found out that imuran and Humira has a higher risk of cancer for males my age. So we asked her to stop the medication it wasn't helping and that higher risk is not worth it. She also did a immunity test for the Humira to make sure my body hadn't became immune. A month later I was too sick and needed an emergency appointment and so they brought me in and I saw the doctor I was supposed to swtich to. He switched me from Humira to Cimzia and put me on prednisone.
I'm still having skin issues and going to the bathroom about 10 times a day. I would have ups and down's I had stated taking Imodium in 2010 and found that for the first few months when I stated Humira I had solid stools for about 3 months. That was the only other time I had that happen. Granted get this only brand name Imodium worked if I took a generic it did nothing. I couldn't figure it out.
Well I had a few okay months on Cimzia but not quite like before with Humira. After a year of it I ended up in the hospital again this time a local hospital. The crohns doctor there seems to work with me better and said he doesn't like people to be solely on a biologic that they need a supporting drug. So he prescribed me Pentasa. I had been doing research the months before this ER visit and had felt this might be the turning point for me. It seemed as things would fall into place, well when I go out of the hospital had issues with my insurance so I called them and found out I should be in a supporting program. So I'm now on Cigna Health Springs Medicaid which has unlimited prescriptions and I now have dental help and includes a gym membership.
Anyway I had massive improvement in the hospital with the Pentasa meaning I had solid stools. But when I got out I couldn't get the medication for a week and then when I went back on it the results weren't quite the same. I don't know why but at least I was having mostly solid stools. By September I was fed up with the shots I was improved just a tiny bit from the Pentasa but I knew the shots weren't helping. All they did was cause me stress. I asked to be taken off them the Doctor was not happy. He said I would end up needing surgery and that I would be worse. By new years last year I was around sick people and kept getting sick but for a change my body was mostly able to fight for itself. I moved to my own place in October and overall was under a lot of different stresses. So mid January I was sick with something Viral and knew I needed Antibiotics and prednisone I missed my GI Doctor appointment as I moved and dont have a car.
So I went to the ER and had to beg to be admited. I was under 90 pounds and knew what my body needed. I feared the GI doctor would think he was right. Biologic or not I still would have ended up here maybe sooner if I'd stayed on them. Anyway they kept me on morphine and when I was discharged they gave me Norco to take for continued pain. My Main Doctor there suggested I get on pain management. I seen my GI about 2 weeks later and when I still refused the Biologic he got mad and told me to find a different Doctor. Honestly all he cared about was success stories for his new paper articles. There are awards everywhere like he's gloating. My mom said that always put her off. I learned then he didn't have me in his best interest he had his fame at his best interest. I know most doctors are paid by medical companies to push their meds. I misjudged him. Well then when I followed up with my Primary Doctor he got upset that I followed the Pain med's instruction's which honestly I did try and take the least I could but all I did was suffer so I took what it said to.
He refiled it and told me to find a pain management doctor. That's what he said in the Hospital how did he forget, it seems he got confused in his move to his new office where he has longer house. I don't know that he cared about me either and cared more about the money he could get as he made my visit as short as he could. That was the fastest Dr visit I've ever had. Anyway the next week I called a number my grandma gave me for their Doctor who is actually right near me. I have seen him for over a month now he seem's much nicer but may not be the best for pain management. I told him my current meds aren't helping a whole lot just enough that I can do stuff but I'm still in lots of pain. As long as I don't move I am around a 4 but when I clean or go places its around a 7. If I don't take them I'm at a 10. He said there are no other options besides norco. I think he may just not be able to prescribe anything else.
He referred me to a new Crohns Doctor who I will be seeing on the 15th I hope we can agree on a treatment that does not include a biologic and that can help. I know Diet is going to help me more too. If I continue to be in pain I'm going to ask to be referred to a proper pain management doctor. This doctor even signed my parking pass I thought that would be much harder. So he seems to be nice and might work with me. I have started going to the gym which let me tell you WOW I AM WEAK. I went there one week and was sore for a week after so we didn't go.
I am trying to help a friend lose weight and I'm trying to put on mass and get strong. As every time I fall I fall hard because I'm so week. Right now though I've made it about 4 time's in one month and each time I have done the lightest weight I could. Prednisone can make bones weak so I am cautious of that and I make sure not to strain my insides. I was going more so just to get in the rhythm of going so when I'm feeling better I can actually start using the gym in a proper manner. As part of signing up we got a free consult with a trainer who will keep track of our progress and helped up figure out what we need to do.
So far I'm actually pretty healthy more than I thought but need to gain lean mass. I am in the ideal body fat range of 17.5% but still feel that I am too underweight. Overall the consult did help me feel a bit better about myself and I learned a bit. I figured the consult was to try and sell us on personal trainers sadly I couldn't afford that even If I wanted it. Which actually I've always wanted a proper personal trainer. But that's 500 a month. I don't have but 50$ left after bills to spend on having fun or eating out or cloths.
Despite all my rough patches I have avoided surgery and hope to avoid it. Surgery scares me and I know how risky it is. I haven't had a colonoscopy since 2011 but before that had one every year. I have had several MRI's and several Barium tests. This disease is not fun.
This past year I have made many friends mostly thought other friends who I was friends with in elementary school. This past year has been in my opinion my best year with crohns and it seems to keep getting better. I've always needed the pain meds I just said no and suffered because I was afraid of becoming an addict and being viewed as a druggie.
Anyway that is my Life Story I hope this helps someone out there with crohns and is either a child or was a child with crohns or a similar condition.
Sincerely
Pete