Hello all, I just wanted to share
my story and also ask some questions.
I was diagnosed with severe
ulcerative colitis on August 26th 2013, my GI stated that only 10% of UC
patients have cases as bad as I experienced. To those that had it even
worse than me, I don't know how you did it, I was prepared to stop the
suffering if things didn't start changing. Thankfully, I had a strong support
system with family and a few friends that are like family.
Basically, I think my body had been
warning me for about 9 months to get checked out. It started November of
2012 when I would notice some blood in my stools. It would vary day to
day and there was no associated pain. I had this issue in years past, but
it normally would just go away after about a week. So, I had the
"It'll grow back" attitude. Well, it continued and my BMs because
softer over time. Finally after a couple of months, February 2013, I went
to the doctor. He checked inside to make sure there was no hemorrhoids or
lesions visible and there weren't. He gave me some suppositories stating
I should try and see if it helps, it didn't. He then wanted me to collect
a stool sample and send it off to a lab for testing. During this time I
was changing jobs and dealing with getting my new insurance set-up.
After I finally got my insurance all
settled, I began making excuses about collecting the sample, mostly because I
felt gross/embarrassed. I figured that it wasn't getting any worse,
sometimes it was actually better with no blood, there was no pain, so I'll give
it a little more time. Another couple of months pass by, May
2013 and the BMs are still soft with blood about 75% of time, mostly small
amounts. I decided to go back to the doctor only to find my doctor for the
past 20+ years had retired, so I ended up with a new one. I explained what had
happened previously and he told me to get some blood tests done as well as a
stool sample....oh joy. I went upstairs to have my blood drawn from the
lab and the lady there tells me they filled out the paperwork wrong. So, I go
back downstairs to have them correct it and it takes them about 30 minutes and
now the lab upstairs is closed. Left a bitter taste in my mouth that I would
have to take off of work again because of their screw up, so to show them how
upset I was, I did nothing....again. The fact that we were on furloughs at work
too gave me another excuse to make to myself.
Fast forward another few months
July/August 2013, still with the slightly bloody and loose BMs, people
started telling me I was looking thinner. Back in November when this all
started I was about 198 lbs (I'm 5' 10"). I decided I was not going
to hit 200 lbs, so I started a diet, using some Herbalife products and cut
out soda completely. Within a couple of months I was floating between
170-175 lbs, which is where I wanted to be. I was maintaining that weight
throughout this ordeal, until July/August when people started telling me I was losing
weight again. I just thought it was the clothes I bought, because I
really didn't see a difference. Around August 19th 2013, I began to feel
something in my intestines, right below my stomach. Was thinking it might
be appendicitis, but the pain wasn't unbearable like people had described so I
figured it was something I ate. A couple more days go by, the pain starts
increasing a little more and my BMs are very loose. People at work start
saying I'm looking a little different and keep asking if I'm sick, I play it
off, because I'm a stubborn male Italian and an idiot. Finally, it was
just getting to be too much and I made an appointment with my doctor for August
22nd.
The doctor checks me out and wants
to verify it's not appendicitis, so they had me hop on one leg...kind of a
weird test if you ask me. I was able to do so and they think it might be
intestinal and they send me to get an ultrasound of all my upper organs, no
intestinal check, to make sure they were all fine, which they were. I
also went and had some blood drawn that day. The next morning, August
23rd, I get a call from my doctor's office stating I need to go to the
hospital because I have an infection in my intestines. I'm thinking,
crap, well hopefully antibiotics will do the trick, but was wondering why I
would need to go to the ER for that. I get there and they start running
all of their tests, cat-scan, blood work, chest x-ray. They state that
they think I have Crohn's disease or Diverticulitis and give me some
medications, a referral to a GI, then release me. I call that day to schedule
an appointment, the lady says there is nothing available for 2 weeks, I tell
her I was just released from the hospital and needed an appointment ASAP, and
something miraculously opened up that Monday, August 26th.
August 25th, the pain is worsening
and I begin vomiting from the pain. My on-call doctor tells me to get
back to the hospital and they will get me admitted. I go back to the ER
and they do a few more tests and then get me admitted into the hospital.
My GI comes and sees me that afternoon and states that I will be getting a
partial colonoscopy, because by looking at my records, he believes it is
UC. He then stated he didn't understand why they admitted me to the
hospital, because he usually just treats patients with this as an out-patient
procedure...kind of a shot at my manhood. I just looked at him and gave a
little chuckle, I didn't know what to say. That night I get to drink that
amazing drink that cleans you out, no fun at all. I was already having
15+ BMs a day for the previous couple of days.
The next day I get the partial
colonoscopy and when he comes to tell me the results, I am shocked to hear him
say that he understood now why I was in the hospital. He verified it was
severe UC over 75% of my colon. They start me on Asacol, Prednisone,
Cipro, Flagyl, Morphine, Iron and I think a couple others. These next 2
weeks are pretty much a blur to me. I stay in the hospital for a couple more
days and my GI releases me on August 28th. I head home with a bunch of
medications, Asacol, Prednisone, Pantoprazole, Ranitidine, Iron, Vicodin
and Tramadol. I'm excited thinking this will be the answer, why else
would they release me? So I have to take some pills for the rest of my life
potentially, I can deal with that. Well, it was far from over.
I go home with a positive attitude
thinking I'm on my way to recovery. But, things only began getting worse,
BMs were still 15+ a day, completely loose, could hardly sleep, pain became so
bad while having a BM sometimes my legs and arms would go numb, and feel like
they were pulsating, I would start to feel like I was going to pass out.
This was by far, the worst pain I have ever been in, nothing has ever come
remotely close. I have had my tonsils out, walked off a broken foot for 2.5
months, had all 4 wisdom teeth out at once, thrown my back out to where I
couldn't get out of bed or move for that matter, none of those are in the same
ball park of what I was feeling. I go back to my GI on September 5th
because things are not improving, I am 142 lbs (lost ~30 lbs in a month).
They take me off of Asacol and start me on Lialda and change my intake of the
Prednisone to once a day. I start getting more severe body aches and
cramping, still no improvement with the BMs, still no improvement with the pain
and I go back September 9th to the GI, where he takes one look at me and says I
am going back to be admitted to the hospital. At this point I am 134 lbs (lost
8 lbs in the past 4 days). During all of this I was eating and drinking
plenty of fluids, but it was no match for the UC.
I get admitted September 9th, and
the discussion begins about the Remicade infusions, because the Asacol and
Prednisone were not working as expected. My family and I agree to go
ahead and try it. The GI does another partial colonoscopy and admits to
some slight improvement, but definitely not where I should have been by that
time. We wait for some test results for TB and some other things before I
can start the Remicade. Finally I get the go ahead and have my first
infusion on September 12th. Over the next few days I actually start
feeling some improvement, be it just a little a day, it was something. I
was still on Asacol (pill), Prednisone (pill), Cipro (IV), Flagyl (IV),
Floranex (pill), Imuran (pill), Dilaudid (injection & pill), Morphine
(pill), Iron (IV), and Fluids (IV). I began having some minor
difficulty breathing, joint aches and pains, muscle pains, tightness around my
upper chest and back so they decided to run a bunch more of tests, EKG,
echocardiogram, another cat scan, chest x-ray, some type of MRI and of course
numerous blood tests once or more daily. Luckily, everything came back
negative. I continued on this for the next few days and we slowly started
moving all of my medications to pills only to start prepping me for a release
to go home.
Finally got the ok to go home on
September 21st, almost 2 full weeks after being admitted for the 2nd time. I had dropped to 125 lbs (~50 lbs lost in 5 weeks). They
send me home with the medications listed below in my signature, plus Cipro and
Flagyl, which I only had to take for 5 days after release. I had my 2nd infusion
of Remicade on September 26th and will have my 3rd on October 25th. I
will then meet with my GI that day and will have the dosage reduced from 10
mg/kg to 5 mg/kg for my 4th and hopefully all future infusions. Still not
sure if the 4th infusion will be 6 or 8 weeks from the 3rd one. He will
also probably start tapering me off of the Prednisone.
Diet wise I seem to be able to
handle everything I've thrown at myself. I have had cereals, Lactaid
milk, eggs, breads (including homemade garlic using smart balance spread and
garlic salt), pasta (meat sauce), Indian food (mango curry and tikka, both with
chicken), bbq pulled pork sandwiches, chicken, ground turkey, avocados,
bananas, rice, potatoes, tuna, salmon, teriyaki, black beans, Haagen-Dazs
ice cream, soy ice cream, iceberg lettuce with red wine vinegar with olive
oil dressing and ginger vinaigrette dressing, Eggo waffles with syrup, flour
tortillas, pop chips, green onion sour cream dip, Lifeway kefir probiotic
smoothie, hummus, salsa (little bit, slowly increasing), parmesan cheese,
Gatorade and Boost drinks (not the high protein one though, I think it
caused an issue). And that is my story so far.
I have a few questions, none are
going to be about food or drinks though. I have already noticed there is
no 100% answer to any foods or drinks that are good or bad for you. I am
just on my own trying things slowly and seeing what's going to work or not
work. Still waiting for another week or 2 before I try any hard alcohols.
Might try a couple of sips of wine in the next day or two. Not even going
to touch beers anytime soon.
Smoking...I have heard that smoking
might help with flare ups. I have read this numerous places online and
actually saw it on an episode of House, which was my favorite TV show.
Anyone have any input on this?
Cure...I have read a little bit
about the Crohn's & Colitis Foundation of America (CCFA) and their
search for the cure of Crohn's and UC. Anyone have any info on that or
know of any other organizations trying to find a cure?
Treatments...Remicade seems to be
doing its job so far for me. I've heard your body can build up an
immunity to it causing it to no longer be effective. Any knowledge or
experience with this issue from anyone? If so, what would be my next
alternative? Are there other biological treatments that might work? I heard
that Humira is a possibility, but I know it is new for this type of
treatment. In the end, I just don't want to have the surgery. I
know of someone who had the same issue I did, she was told she would have to
have the surgery, she refused and went with a homeopathic doctor and has been
symptom free for 10 years. Would like to know if anyone else has taken this
approach.
Sorry for the long post, this is
just all so new to me and I'll admit it, I'm a little scared about what the
future holds. Thank you in advance for your input.