Ulcerative Colitis – What a Pain in the Backside

First of all I want to start by saying, if you even think you have Ulcerative Colitis and that’s what brought you here, go get checked, you do NOT want to end up like me!

My Ulcerative Colitis Story:

For as long as I can remember, I’ve suffered from severe abdominal pains, nobody ever really believed me and just discredited them as reasons for me trying to get out of school, but recently they’ve been given a reason to change that opinion.

To give you a bit of info, my name is Jamie, I’m 17 years old from Dublin, Ireland.

Back in November 2010, I noticed some changes to my bowel habbits.
Before this, my bowel motions were pretty much once a day, normal motions, but on November 5th I started to get looser motions, which became more frequent, at the start I thought this was absolutely nothing to worry about, and within 2 weeks it sort of returned to normal.

After this, in January, I noticed blood on the tissue paper i’d just used to wipe with, thinking i’d just torn some skin I thought nothing of it, but after 2 weeks the bleeding was still there, so I decided to go to Dr. Google… bad idea.

Google has a way of giving you worst case to best case, but never gives you the grey in between, so Google scared me into thinking I had either Bowel Cancer or an Anal fissure (where your rectum rips from passing a bowel motion or for other reasons depending on what you’re into..) so obviously I was pretty worried! especially as my bowel motions were getting looser and looser and the blood wasn’t going away, which ruled out anal fissure pretty quickly.

I waited until I got so sick that I could keep the secret no more, in May of 2011 I finally told my mam what was going on, she took me to the doctor straight away who organised a colonoscopy for 2 weeks later, HOWEVER, me being a 16 year old boy was thinking “Camera, up my butt? not happening!” so I refused to go for the test.

The test date was cancelled as I didn’t even have a consultation with the doctor first, so I absolutely point blank refused to have someone I didn’t even meet put something like that up my butt!

Also, they told me that to do the test, they’d need to put a canula in my hand for sedation, this was a definate no because I am TERRIFIED of needles and completely against drugs that alter your state of mind, so they sent me to the hospital shrinks for my needlephobia while trying to work on me with the sedation part of the plan.

Months past, I let myself get worse and worse, by July 11th 2011 I could no longer leave my house, Anemia had completely set in, I was now housebound.

Eventually, we worked out a plan with the doctors, they needed to do blood tests on me to assess how bad everything was (because with my Anemia and my physical condition, they knew I was going to be pretty sick.) and they needed to do the Colonoscopy, but I couldn’t work with needles while awake, so they brought me to a different hospital to get the test done under general anesthetic instead where I would be put asleep, then have a canula inserted into my hand and have blood tests done

It was all organised for September 8th, but they then changed the date to September 15th, I felt this was too far away (I was told this on August 11th 2011) so they managed to reschedule it to the 6th of September.

I woke up from the colonoscopy (which was actually only meant to be a sigmoidoscopy, but they ended up finding that I had Pancolitis, so they needed to go ahead with a full colonoscopy) and was told that I had severe pancolitis.

I was sent home that day, but a few hours later my mam received a phone call from the hospital saying that I needed to be rushed in straight away, that it was an extreme emergency.

As soon as I got to the hospital I was rushed to CCU and put on heart moniters, it was explained to me that my hemoglobin was only 3.8 and my potassium was 3, and that my heart was under extreme pressure.
I had a resting heart rate of 157 so I was pretty much dead, I couldn’t even stand up I was so weak, but this was something i’d learned to be normal because i’d adapted to it over the last months, I didn’t realise why they made such a big fuss about me.. until the next morning.

The next morning I woke up to find one of my shrinks sitting in a chair at the end of my bed waiting for me to wake up, she explained to me how bad the situation was, and that I needed a blood transfusion (I mentioned my fear of needles, right?)

I told her it pretty much wasn’t happening, so she explained that if I didn’t do it, i’d die, and they’d be going for a court order to force me to have the transfusion.

It was explained that i’d need 20 units of blood over 5 days, i’d also need a lot of potassium, phosphates, hydrocortisone and intravenous multivitamin drips aswell as 3 times daily blood tests for what they taught would be about 3 weeks, so that a canula wouldn’t be the best option, they wanted to insert a PICC line (which for those of you who don’t know, it’s a line that runs about 90cm from your elbow into your heart).

Later that same day, I found myself down in a room with a doctor holding a huge ass needle and a PICC line ready to be inserted into my arm, which has to be one of the most horrible things i’ve ever had to go through in my entire life (even though i’ve only been alive for 17 years)

Due to leaving my condition for 9 months in full flare completely untreated I’m now left trying to get all my levels back to normal, especially my albumin levels, which were so low that they actually could not measure them, my level of malnutrition is so bad that my leg is currently retaining about 8kg of fluid, my weight dropped from 9 stone 5 to just under 7 stone (and I’m 5ft 7, which makes that an under anorexic weight)

To think that this could have all been avoided with a camera, a needle and some steroids makes me feel like a complete idiot, so please, never be as stupid as me, just get the test, it’ll hurt a lot less!

 

Ulcerative Colitis Medications:

Hydrocortisone – worked well for me, caused serious mood swings though!
Pentasa 1g granules – I find them way easier to take than pills, they’re also a lot cheaper for the americans! I take them 3 times daily, no major side effects as of yet but it’s early days
Potassium Drip – no side effects, but I hated them anyway
Phosphates Drip – for some reason made me feel really sick, after they unhooked me I got up and barfed.
Ensure Plus Chocolate – great for gaining back albumin lost during malnutrition.

 

Submitted by Jaime in the Colitis Venting Area