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My Story

I have only been diagnosed with crohn's since around september of this year. I had been having abdominal pain off and on for years, and had also had episodes of vomiting and diarrhea for quite some time. Each of those times I thought that it was something that I had ate, and nothing more. Finally one day, the pain in my abdomen got so bad that I was to the point of nearly screaming due to the pain. I couldn't hold anything down, and had diarrhea on top of that. I had my mom take me to the emergency room. When I got to the emergency room, they rushed me to a room, which I feel like should have been a sign of what was soon to come.

Everyone was suspecting that I had a severe case of appendicitis, or even that my appendix had ruptured. I didn't realize that soon I would be wishing that this was the case. Upon doing a CT scan, the doctors and the surgeon were unable to see my appendix, so naturally a ruptured appendix is what they concluded. My surgeon came in my room, and explained what he would be doing. When I woke up the next morning, I found I had an ileostomy. My mom explained to me that when my surgeon did the surgery, he had actually found my appendix completely whole with no problems. What had happened was that my colon and small intestine had perforated due to a blockage. As result he had to give me the ileostomy. He also was the one who gave me my diagnosis of crohn's, and informed me that I have probably had it for close to 3 years judging from the scar tissue he saw.

Talk about something to have to grasp. Literally over night my whole life changed. When I went into surgery, I wasn't even aware that that was a possibility. My mom told me afterwards that my surgeon told her it was, which I am thankful for. I was immediately set up to see my GI. I think that was when the reality of things truly set in. When he talked about my crohn's he used words like "severe". He also informed me that from that point on the two us would essentially be developing a lifelong relationship. That was initially hard to grasp. I am 26, and was healthy up until that point.

Two months after my emergency surgery, I found myself back in the hospital, due to a flare up. Once again the reality of things hit home when one of my nurses was getting my background, and immediately knew who I was because the night of my surgery her mother was my nurse. You don't become famous in a hospital because you are in great shape normally. Shortly after that stay, my small intestine prolapsed, and my surgeon decided that it was definitely time for the ileostomy to go.

After my reversal surgery once again I was reminded about the severity it my crohn's by both my surgeon and GI. My surgeon informed me that my crohn's was worse than he thought it was, and that he had to take out even more of my small intestine. He also told me that he was working with my GI to get me on one of the biologics. That alone struck me as odd, because basically my surgeon's job was done at that point. When I saw my GI, he told me that basically if I were not able to be on the biologics that he did not know what the heck he was going to do. Fortunately, everything has worked out. This all happened within the last 4 months, and has been crazy. I am thankful that I do have the doctors that I do who have done such an awesome job. I have learned that we end up needing to develop a good relationship with both our GI's and their staff as we spend so much time at their office, and on the phone with them. I am grateful to have the relationship I do with the staff, and to be able to feel like they actually see me as a person, and not a person paying their bills.
 

Angrybird

Moderator
Location
Hertfordshire
Wow! That's a lot of stuff to go through in a short amount of time. What meds are you on now for treatment? I am glad they are workng and will keep fingers (and toes) crossed that this continues. It is wonderful that you have got a good team on your side as once you have had a look at some of the threads here it is astonishing what difficulties poeple have getting the most basic treatment and understanding from their docs.
 

xJillx

Your Story Forum Monitor
Hi and welcome! Boy, you've been through so much! But it does sound like you have some good doctors in your corner. Like Angrybird, I am curious as to what your current treatment is? How have you been feeling? I sure hope you have healthy road ahead!

Once again, welcome to the forum!
 
Right now I'm only on 10mg Prednisone once a day, 50 mg Azathrioprine once a day, and 40 mg Humira every two weeks. At this point that is subject to change when i go see my GI again, but he told me that I will be on the Humira indefinitely as long as it is working, and both the prednisone and azathioprine for a while.

I am actually feeling extremely well. It's interesting to hear my GI and surgeon talk about how bad my crohns really is, and have very little if any pain. Unfortunately its hard to deny the severity when my surgeon has seen everything first hand. Plus my surgeon is one of if not the best in the area, and has probably the best reputation, so he knows what he is talking about. I'm fortunate because I basically eat whatever I want with relatively no problems. The one big reminder of my crohns, is that like many, I have usually at least 6 bm's a day, even with the medications I'm on.
 

xJillx

Your Story Forum Monitor
Yes, if Humira is working for you, stick with it! Unfortunately, if you stop treatment and flare, there is a good chance it will not work again in the future.

It's a good thing you don't feel too unwell despite the severity of your Crohn's. However, you'll have to be sure to get regular testing in order to monitor its activity. Usually when people become symptomatic or more symptomatic, its an indication of active disease. However, without any symptoms, you don't have a warning to get yourself to the GI. So, be sure to stay on top of your health and have regular visits with your GI. :wink:
 
I most definitely will make sure to have regular visits with my GI. From the way my GI has talked, he plans on monitoring things pretty close. Since ending up in the hospital the first time, I dont mess around with my health anymore.
 

Angrybird

Moderator
Location
Hertfordshire
Hi there, I am really pleased you are feeling so well. Sounds like you are on a good treatment plan and it's good to see you are managing on a reasonably low dose of pred.
 
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