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13 Years Diagnosed

Hi everyone,

This is my first time really reaching out to a community regarding my disease. Lately things have been pretty stressful and with no one else to talk to, I thought I could get some stuff of my chest here. Please be aware that I do not know a lot of the technical terms for symptoms and organs so don't be too harsh if some stuff seems vague.

Originally, when I was 12, I had an intestinal blockage that put me in the hospital for a few days till it sorted itself out. The doctors told my mother that it was probably due to over eating and released me when it appeared that I was able to pass food again. I wasn't officially diagnosed at this point.

Five years later, I went into emerg due to intense abdominal pains, vomitting and not passing any stool for several days. After several days of x-rays, MRI's and a stomach pump, I was told that my small intestinal lining had severe scarring and this was due to the fact that I had Crohn's Disease. Prior to admitting myself into the hospital, I was showing some signs of Crohn's disease but I guess my mom and I chalked it up to my lifestyle as a teen and not the disease (though constant diarrhea should have raised red flags). After I was released from the hospital, the GI I was referred to prescribed me Prednisone, Salofalk and Imuran.

The Prednisone prescription was only for roughly 6 months but while taking the drug I was showing several of the side effects: increased hunger, extreme weight gain through water, "moon face", mood swings, acne and increased sweating. This was a pretty hard time, especially for my girlfriend (now wife). The Salofalk and Imuran were consistent for another 3 years up until I had a meeting with my GI. He informed me that he would like me to start Humira as soon as possible. With this he also informed me the general cost of the drug and the side effects. At the time I was just starting college and did not have a plan that would cover the drug. In addition to not being covered, some of the side effects were very worrying to me. When I brought this up with my GI, I was told that it was Humira or nothing. I stopped seeing him after this and stopped taking my medication. I changed my diet to gluten-free (a recommendation from another doctor) and exercising. This somewhat worked while I was consistent with this change in routine but would usually have a Crohn's flare up about twice a year that would either land me in the hospital for a few days or make me bed ridden.

I slowly went off my diet and stopped exercising but the flare ups stayed consistent. I also stopped going to emerg entirely due to the fact; 1. our local ER is so bad that average wait times are 6-12h and 2. once I did get into emerg, I would usually just be given morphine for the pain, liquids through IV to keep myself hydrated, an X-ray to see if I had a blockage and admitted till it sorted itself out. This was life for 8.5 years until I had a flare up in December 2017 that coincided with Kidney stones.

After being admitted for the kidney stones and having another X-ray, I was informed that the irritation from the kidney stone attack also sparked a Crohns flare-up. I was kept in the hospital till I passed the stone and was also referred to a new GI due to my old GI retiring years ago. I told her about my recent history (past 10 years) with being able to somewhat maintaining my Crohns flare ups. She scheduled a follow up appointment for August of 2019.

In July 2019, I was noticing lots of bright red blood in my stool. When I informed my GI, she told me that I had to go into emergency surgery. I packed up and told my work I would be off for a while before admitting myself into the hospital. In 4 days I had a colonoscopy, and X-ray and an MRI. I was informed by the surgeon that the area that would have to be removed was to extensive and that an operation would leave me with almost no small intestine. (Again, I'm sorry I don't know technical details, next time I see my GI I can ask for more information. ) The X-ray and MRI also showed that I had several intestinal fistulas that were connecting to other parts of large and small intestines. To help heal the fistula's and hopefully put my Crohn's into remission, I was prescribed Remicade and methotrexate.

Since August I have been getting Remicade infusions every 8 weeks (except for the fill up period) and take 12.5mg of methotrexate one a week. Other than the lack of flare ups (which I was only getting about twice a year anyways), I did not noticed any quality of life changes. Lately however, I have noticed that almost all of my bowel movements have been bright red blood stool. I went in for an sigmoidoscopy last month and was told that nothing out of the ordinary was observed and that I will need to have another MRI done before my next infusion. In addition I would be having blood work taken prior to the infusion to check my Remicade levels.

And that's where I am now. Other than the blood stool issue, I've been extremely stressed out. But I mean who wouldn't....it's not normal to see blood every time you go. I really need to be able to talk to people that share the same illness as myself who understand the stress and frustration that Crohns causes.
 
Welcome to the forum RinTinBrim. So to clarify, you still haven't had any surgeries, and you have been on Remicade since August? Definitely, there shouldn't be seeing that much blood. It's a good thing that they will be checking the levels of Remicade on your next infusion. At this point in time, you should be seeing some positive results if the Remicade and MTX were working. After you receive the results of the levels, your GI might determine to increase your dosage or try something new. Either way, you should keep your GI up-to-date on what's going on.
 
Welcome to the forum RinTinBrim. So to clarify, you still haven't had any surgeries, and you have been on Remicade since August? Definitely, there shouldn't be seeing that much blood. It's a good thing that they will be checking the levels of Remicade on your next infusion. At this point in time, you should be seeing some positive results if the Remicade and MTX were working. After you receive the results of the levels, your GI might determine to increase your dosage or try something new. Either way, you should keep your GI up-to-date on what's going on.
Yes. I have not gotten surgery because it was deemed too risky.
I've been on Remicade since the end of August 2017.
Today I sent a running list of the dates and times I had stool issues. My GI was on call but she should be getting a hold of me next week... Hopefully.
 
August 2017 or August 2019? If it was 2017, and you haven't really felt tremendously different, then I am surprised you are still on it. If it's 2019, then you might need adjustments to dosage. What dose are you currently on?
 
August 2017 or August 2019? If it was 2017, and you haven't really felt tremendously different, then I am surprised you are still on it. If it's 2019, then you might need adjustments to dosage. What dose are you currently on?
I started at the end of August 2019. I can't remember the dosage off hand.
I might have an email that says my dosage but it was one bag (I'll look up how much that is)

Edit: I have an infusion on the 23rd this month so I can get the dosage amount at that time.

Edit 2020/01/14: My Remicade dosage is 5mg/kg every 8 weeks.
 
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