My Ulcerative Colitis story

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mikeplatt8
Regular Member


Date Joined May 2006
Total Posts : 108
   Posted 3/28/2008 1:32 PM (GMT -6)   
I was diagnosed with Ulcerative Colitis in the summer of 2005 at the age of 20. Like many others, I went through a series of discomforting medical exams. At the time I had it in my mind that I would recover and be on my way to college. Little did I know what was ahead of me.

The summer passed and I was given prednisone and Asocal. With the combination of these two drugs I was doing ok. However, for some reason there always has to be a but in almost everyone story. Here is mine :) But...whenever I would try to get off prednisone I would flare. Frequent trips to the bathroom with horrible urgency occurred more and more. At times I hated my life! On a positive note, I believe my young age allowed me to keep my head up and fight. Many can agree teenagers and young adults think they are invincible. So college was still ahead of me and through the first semester I had more than enough ups and downs. My medication was not working anymore and I was stuck on 40-45 mg of prednisone. If I dare would try to tapper I would find myself sick and wanting to cry. Colazal, Asacol and Remicade all failed in my case. The days passed some bearable some not. A semester of college which for many is exciting, enjoyable and for some considered the best days of their lives was just a blur and a relief I made it though.

The New Year approached and things would only get worse. Without going into much detail, my disease had taken control of my life and caused me to withdraw from the spring semester. I needed hope, a change, something to keep my head up. In agreement my family and had decided I needed a new Gastro. Here I was, in my second summer of the same pain and discomfort. Immuran was my last resort I was told. Unfortunately my body didn't like that drug and I became jaundice and developed a liver toxicity. I remember sitting in the office of Dr. Westra my Gastro and holding back tears. I knew what was ahead of me, good ol' surgery. Really it wasn't because I was mad that all these drugs failed on me but I needed a life. These were the exact words from my gastro, "Michael your a young kid with your life ahead of you. You need to get on with your life."
Believe it or not I was excited about the thought of getting on with my life. Into the story comes Dr. Richards my favorite doctor of all time. After leaving our consolation about my surgery with Dr. Richards again I was excited. I was on my way to getting my life back. So the months passed and I keeping my flares under control with a high dose of prednisone until the surgery date came around.
December 29th, 2006 at Harrisburg Hospital in Pennsylvania. For the next 4 months I felt like this hospital was my home. Right after I was released I wrote my thoughts down and would love to share them now.

January 9, 2007 - Tuesday

SOMETHING I WILL NOT FORGET
My eyes opened and staring down on me was my Father and Step Mother. This was the beginning of one of the most difficult weeks of my life. Friday December 29th around nine in the evening I woke up from surgery (removal of my colon). Waking up from surgery wasn't scary and thank God for morphine it wasn't that painful either. The first couple days were basically a big blur until the day they actually began giving me food which then gave me some energy. Throughout my stay the nurses were frequently caring for me, which was very comforting knowing they were making sure I was doing ok. I slowly progressed to get better and have less and less pain. Eventually, I was up and walking. New Years Eve I was kept company by my Father, Step Mother and Brother we all watched some movies and joked around until the New Year. So in all my New Years Eve this might not have been the worst.
New Years day was a day of relaxation and healing however pain and discomfort was around the corner. I just remember Tuesday night January 2nd, 4 days after surgery my incision began to burn and ache, my hips had turned purple, I started to run a fever, I had severe back pain and was bleeding bad. All the surgeons were notified however it wasn't until Wednesday when they actually got worried enough to find that I had an infection. This was so scary because all Wednesday nurses and surgeons were trying to figure out what was wrong with me. I just remember screaming in pain because the surgeon had reopened my incision and was pressing on it and cleaning it. I was so weak I couldn't stand on my own and even was given an x-ray right there in the hospital bed. Everything was going wrong! Never in my life was I in this much pain! My father thought I was dying because he has never seen me like that.
So I was unfortunate that my wound became infected but after Wednesday again I was on my way to healing. The next couple of days were all steps forward and thanks to family and friends visiting they weren't bad at all. So yes the anticipated date to leave the hospital was on Wednesday but that did not happen and I sent home on Sunday January 7th. Now I am home still in pain recovering but it's better then being in the hospital. Recovery will take a while and before I know it I will be back in the hospital for my final j-pouch surgery. Right now I feel healthier than I did when I had Ulcerative Colitis and enjoy being able to eat without pain and discomfort. Thank God!
I just want to thank God for allowing me to get through everything. Thanks everyone who came to visit me and gave me something to smile about. Without family and friends visiting things would have been much harder.

So now you now what I went through in the hospital for the first step of my surgery. Doesn't sound to much fun does it? So for the next 3 months I would have some minor complication that landed me back in the hospital. Finally, April rolled around and I was never more excited about getting this last procedure over with. Sorry I wish I would have written down my thoughts right after I got home but I must have been so overjoyed it didn't cross my mind. From what I can remember I believe my second surgery was more painful when I woke up. For some reason I had more pain the second time around. I have read some people get out of the hospital ranging from 3-5 days. For me it was a bit longer mainly because I was vomiting for some unknown reason. I tell myself it was from to much morphine and pain meds. Because I was vomiting I was not eating and a pick line (IV line) was put into my left arm. I was sent home with this and needed to hook a pump up to my arm every night for about 3 weeks. I felt great, I was eating and so eager just to get on with my life. After those three weeks with the pick line passed I was free of everything and back visiting my friends, going places and doing what someone my age should do.

Here I am. Months passing... I went to the beach this summer, enjoyed the family reunion (great food) and have been able to hang with many friends I lost touch with in the past two years. I am in college, living on my own. THINGS ARE GOOD!

 

Check out my youtube video about my story as well.

http://www.youtube.com/watch?v=mEE4KL8FhPs



redbull
Regular Member


Date Joined Mar 2008
Total Posts : 30
   Posted 3/28/2008 3:55 PM (GMT -6)   
If you had your colon removed what was the second surgery for.P.S glad your doing good.

Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 3/28/2008 4:59 PM (GMT -6)   
I am so happy things are coming back together for you. Were you able to go off meds or at least reduce? Take care!
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30828
   Posted 3/29/2008 11:22 AM (GMT -6)   
Mike...thanks so much for sharing your story. Your vid is a great presentation of "life in the day of Mike" as well as for those of us looking into/considering surgery.
I think you're a great speaker and express your thoughts very clearly.

I'm happy you're doing so well after going through such a scary time.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 3/29/2008 4:46 PM (GMT -6)   
Great story. Glad you are doing well now. Must be relieved that you don't have to take any more meds and not having to deal with the UC must be so exciting.......................Congrats!!!!
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 3/30/2008 8:01 AM (GMT -6)   
thats awesome. glad that you are doing better. at a future point in your life you will look back and not even keep the bad memories, because you will be able to have moved on. :)
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum

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