Crohn's Disease Forum » Your Story » My life so far...

01-09-2013, 07:58 PM   #1
Join Date: Jan 2013
Location: Toronto, Ontario
My life so far...


Since I'm new here, I guess I should tell you about me...

Since as far back as I can remember I've always had one health issue or another, and I suppose that's because I was born with kidney problems(had a kidney transplant in Aug of 1999), hearing problems(high blood pressure as a baby damaged nerves in my ears), and a heart murmur. I've never really let those things stop me, however in the summer of 2010 I started getting the mother of all rashes! I thought I was going to go crazy with this rash...I told my doctor and she told me it was probably a allergic reaction to a bug bite, or perhaps something I ate, so she told me to take Reactine, but of course it didn't help. About 2 weeks later I started to get stomach cramps and everybody's favorite... Diarrhea, and it lasted for 3 weeks! I assumed I had some sort of stomach virus and when it stopped I forgot about it...For exactly 1 month I forgot about it But then it started again, however this time it lasted for almost 3 months!! I also noticed I was cold and extra tired all the time. At this point I put my male pride aside and went back to my doctor and told her about all the things that have been going on with me, and she sent me to a gastroenterologist(think that's how it's spelled) who recommended I get blood work done and a colonoscopy ASAP. After I had the colonoscopy they called me in to discuss the results of both the blood test and colonoscopy, and that's when I heard of not 1 but 2 diseases that I had never heard of before...Crohn's disease, and primary sclerosing cholangitis(which is what the itching was all about)
I have to be honest when I say that at the time I handled the news fairly well, however that was before I did my research on these 2 particular diseases, which had told me that not only will I have to deal with a lot of symtoms due to these illnesses, but I will have to do so for the rest of my life(By the way I'm sure you can tell I'm still in the "it's all about me stage" but I'm working on it).
I used to work as a Personal Support Worker(PSW's work in hospitals and in people's homes as well), but I'm sooo tired all the time now, not to mention the bathroom issues which hasn't gotten much better even with the Pentasa. I've also noticed my vision has become blurry, my joints and bones hurt all the time, and don't get me started on the stomach cramps, but why am I telling you guys, it's not like anybody here knows what I'm talking about here...Right?
I don't even go out with friends anymore because I never know what's going to happen with the Crohn's, and since my doctor told me that because of the primary sclerosing cholangitis I have to worry about even getting a fever! She told me that if I get even the slightest fever I have to go to the emergency room because people with this disease have been known to die within 24 hrs after getting a fever!!!! I haven't once gone to the emergency room though...I just can't bring myself to do it.
I'm on a ridiculous amount of meds now(here's the list): CellCept, Co etidrocal, Advagraf, Pentasa, Tiazac XC, Prednisone, Colchicine, Zyloprim, and Mavik!
With the exception of my brother who thinks I'm lazy, and exaggerating my symptoms everybody else has been very encouraging, and I'm hoping with time and help from you good folks here I can learn to get stronger in both body and mind

So that's more or less my story in a nut shell(a kind of long winded nut shell), and sorry if I complained to much...

Thanks for reading
01-09-2013, 08:49 PM   #2
Senior Member
lilninja's Avatar
Join Date: Jan 2010
Location: USA
Hello welcome

This is a great place to vent, get help and laugh. I' ve learned a lot from the good people on this forum. I too don't go out much with friends or family because of my crohn's. it's a hard disease to get a hold on. I hope you start feeling better really soon.
Imuran 150 mg
01-09-2013, 09:04 PM   #3
Forum Monitor
Trysha's Avatar
Join Date: Aug 2009

My Support Groups:
Hi Torontoguy,
That is quite a story and speaks of your endurance of a very difficult set of illness
It is very sad when the family does not understand the gravity of your situation.
I would have thought you could apply for disability benefits since you obviously cannot work with your illness.
My heart goes out to you and hopefully you will soon find some help and perhaps an alleviation of your symptoms.
You will find lots of support in this forum and there is a lot of information available in the sub forums, if you feel like taking a look around the forum site.
Feel better soon.
Hugs and best wishes
01-09-2013, 09:19 PM   #4
KWalker's Avatar
Welcome from the other side of the QEW!
Age 2 (1992)

Previous Meds:
Methotrexate (oral)
Methotrexate (injections)

Current Treatment:
200mg Simponi, Psyllium
01-12-2013, 04:58 PM   #5
Join Date: Jan 2013
Location: Toronto, Ontario
I want to apologize for taking so long to respond to the kind words and welcome I've been given here I find that I have trouble talking about my illnesses with people, and I really have never tried to get to know others who are going through the same things as me. When I was a kid I was told by the doctors and my parents that I should meet other people with kidney disease, so that I could maybe learn to open up about how difficult is was for me, but I never did...Now that I'm an adult and now have both Crohn's and PSC( primary sclerosing cholangitis), I find myself unable to deal with the looks that I get from those that I do tell...You know what I mean right? The look of pity that some people have for you, which is why I never told anybody about my medical problems growing up, not a soul besides my family knew until I had my kidney transplant at the age of 20(I'm 33 now). I know it sounds like I'm complaining, and I know it could be much worse, but I think in the end I've never actually dealt with the anger that I feel about being sick...I've spent my life being in denial about the whole thing, and until the whole Crohn's thing I was able to to keep that image going, but now...I can't hide it from anybody, which means I get the pity, which is very hard for me to bare...
I just looked at what I wrote, and man do I complain a lot...Sorry folks

Thanks lilninja, as I'm sure you can notice I am venting...A LOT

Trisha, to be honest my brother has been trying...We had a loooong talk the other day and I think he is FINALLY beginning to get how difficult it can be, and I have been on disability for almost a year now, but A) I would really prefer not to be on it at all(It hurts my man pride lol), and B) It's damn near impossible to live off of a $1100 a month, which not only makes surviving financially every month difficult, it again hurts my "man pride" lol.

KWalker, thanks for the welcome, hows it going down in St. Catharines lol?

Thanks again for reading

Last edited by Torontoguy; 01-12-2013 at 05:04 PM. Reason: changing my wording of a sentence

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