Oh Ulcerative Colitis… How I Underestimated You

Introduction:

Hello everyone. I am 26 years old, and was diagnosed with Ulcerative Colitis in May of 2010. The diagnosis came just weeks before i moved back home after graduating college. I was prescribed Asacol which i took off and on for maybe a couple of months, but never saw another doctor at home, and have completely ignored the UC since. Well…..about a month ago i began to have my first “real” flare-up and I am completely miserable.

My Colitis Story:

It all began about two months ago when i got a promotion at work and quit smoking. I was starting to use the bathroom more and more, but more than anything i was just EXTREMELY tired all of the time. I was randomly getting a fever for a day or two here and there, and saw my GP twice for what we thought were abscesses in my throat. Long story short, I was diagnosed with mono. I was happy to have an explanation for all of my symptoms, and took a few days off to recover. All the while, ignoring the fact that my UC symptoms are getting worse. Around the middle of July, I was now pooping 15+ times a day and decided it was time to see a Gastroenterologist.

July 25th I saw a doctor for the first time since I was diagnosed with UC with my colonoscopy results from 2010 in hand. The visit was relatively quick, and i left with a prescription for Apriso and Prednisone (30mg a day) and instructions to take probiotics and fish oil. I was told that i should see some improvements in 2-3 days.

July 29th came around, and i was heading out of town for a family reunion. Not only had i not seen any improvements, but I was now pooping 20+ times a day, waking up numerous times in the night, bleeding more than ever, and developing pain in my abdomen. I called the doctor to let them know my situation, and was told to bump up the prednisone to 40mg a day and prescribed me Flagyl (an antibiotic). As a last ditch effort, I picked up some nicotine patches for the trip. Well the trip was an experience to say the least! Between the security checkpoints, airplanes, layovers, drives, 1 year old daughter, and pregnant wife…..I was now beginning to experience UC for what it is.

My next appointment was not until Monday, August 8th. So once we returned from the reunion I called the doctor again to give them the news. I was told to bump up the prednisone again to 60mg a day and hold out until my appointment. The following week at work was miserable….bathroom trips, cramping, super fatigue, etc. Thursday I decided it would be a good idea to start running a fever (~102). Keep in mind, I just got a promotion and started at a new office. Not only did i have to take off time for the mono debacle, now I am dealing with this….and I am NOT the guy who calls in sick. On top of all of this, 90% of the office is going to a convention from 8/8-8/10 and i was given a hefty amount of projects that needed to be done before they left. This being the case, I made the decision to go in Friday morning despite the fever, and joint pain that i started to develop.

Friday, August 5th was intense…In addition to all of the regular symptoms, I was now DRENCHED in sweat and coughing uncontrollably (which is awesome when you’re leaking….) After finishing the projects, I called it a day. The weekend was uneventful, but offered no relief whatsoever from my symptoms.

Yesterday, August 8th was finally my follow up appointment! The entire day at work i felt like i was going to pass out or drown in sweat, but powered through it knowing that i might have some relief once i get to see the doctor. The doctor says that I am not responding to the Apriso, and prescribes me Pentasa and Cipro (another antibiotic). He also ordered a stool sample which i turned in this morning.

Today, I feel like i am on my deathbed….bathroom issues are unchanged, fever is coming back, I am SOOOOOOO tired. Despite going to bed at 7 last night, I was nearly falling asleep on my drive into work. Once i got to the office i was as pale as i have ever been, sweating profusely, aching, urging, and just freaking miserable. I called the doc for a timeframe on the lab results with the hopes that it is something bacterial or viral that is causing all of this. The results won’t be in until Thursday, and my next appointment is on Monday.

Hopefully the Pentasa will give me some relief, but what if it doesn’t? How much worse can this get? Am I just being a wimp?

I have tried to vent to my wife about all of this, but she is understandably not sympathetic since i ignored it for so long….and she is 4 months pregnant! I don’t really know what i am looking for here, but it makes me feel good just to type this all out. Thanks for reading!

Medications I want people to know about you with regards to my colitis:

Pentasa
Prednisone
Cipro
Flagyl
Fish Oil

Submitted by “This Guy” in the Colitis Venting Area

On August 14, 2011, there is an update to this story, read it HERE!

 

 

Some Related Stories and Topics:
Ulcerative Colitis and Joint Pains




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8 Responses to Oh Ulcerative Colitis… How I Underestimated You

  1. Vicki Thomas August 14, 2011 at 9:11 am #

    You are definitely not being a wimp! I think that it sounds like you should be in the hospital getting medical care. I let my flare go on too long – very similar to what you’re doing and ended up very ill and in the hospital. If I were you, I’d drive to the emergency room and get admitted. Obviously the medication you’ve been given isn’t working. You’ve likely dropped a lot of weight as well.
    You need to be proactive in this.
    Sorry to read that your wife is not being very thoughtful towards you. Please get to a hospital. Don’t wait around for test results and for your doctor to call you.
    Most of us on this site have done just that and have ended up sicker than we neede to be.
    Let us know what you do.
    vicki

  2. Helen August 14, 2011 at 9:20 am #

    Hi This Guy, NUMBER ONE you are NOT being a whimp! You need to be in hospital on IV steroids!!!! I can’t believe you are still working, you must be in pure agony. Are you on any pain med’s? Are you on any calcium tablets? I would highly recommend you start taking a probiotic a good one in capsule form that needs to be refrigerated! This will be good for your colon and while taking prednisolone too.

    I cannot believe you GI has not sent you to hospital! Have you mentioned your joint pain to your GI? What about going to your primary physician if your GI is being so casual about things??

    I really feel for you! The steroids are probably causing the profuse sweating! They are known for this I sweat profusely on steroids and specially at night! Stay well hydrated you are losing a lot of fluids both through loo trips and sweating. Drink Gatorade (it will replace lost fluids and electrolytes too) if you can get your hands on it and stay away from salads and veg unless well cooked. Eat foods that are low residue to lessen your toilet trips. You need food that will bind you up a bit like white rice.

    I have UC 6 years loads of experience with flares etc and I know that if I was as bad as you are now my GI would have me in hospital! I was half as bad as you in May and my GI kept me in for 9 days. If you have any questions just ask?

    Take care, Helen,

  3. Anita andersen August 14, 2011 at 3:13 pm #

    Agree with both Viki & Helen. You should be in hospital. My GI was similar with me last year, was in my worst flare last year for too long just waiting for doctors to do something. Finally I was admitted for 12 days and have learnt never to let it get to this point again, in future if I’m not responding to meds and things are getting worst, it will be straight to the hospital. I hope you have seeked the help you need and are on the road to recovery. What you’re going through at the moment is so tough, being sick, new job, pregnant wife etc all these involve their stresses, and with uc being stressful enough, combined can make matters worst. It’s hard not to worry or stress, but try to find some time to clear your thoughts, relax, deep breath and do some positive thinking, believe you will get better. Take care, hope to hear about your progress.

  4. Tony (UK) August 14, 2011 at 4:15 pm #

    I am absolutely amazed that you are still working, you have got to stop before you do yourself serious harm or have an accident. You are not doing any one any favours by soldiering on, least of all yourself or your family. I suspect you don’t want to feel that you are not providing for your family which is understandable but you are ill. I’m staggered that your doctor is still allowing you to work. You have got to admit to yourself that you are unwell, I know you have listed your symptoms but I don’t believe you have really accepted that you are seriously ill. Try to keep in mind that at least with UC with the right advice and medication, your symptoms can be reduced and even kept at bay. Please keep us up to date with the care you receive and how you feel, we all know what you are going through.

  5. Heather August 14, 2011 at 7:29 pm #

    Wow you are in some serious denial. The Pentasa is obviously not working and you need to step up to the next lot of drugs. UC is not a joke, you can’t just ignore it. If you don’t get yourself some help, you will end up in the hospital REGARDLESS and there are a lot of serious complications that you are setting yourself up for. THIS WILL NOT JUST GO AWAY UNTREATED.

  6. Steph August 14, 2011 at 11:26 pm #

    I’m like everyone else–how is this guy still working through all this!? You poor thing. I hope something works for you soon. You are definitely not a wimp. Don’t hesitate to go to the hospital if nothing improves, you sound like you are in pretty rough shape. Many of us here, myself included, have been hospitalized for UC before, so it’s pretty common. Please don’t feel like you are being a wimp.

  7. This guy August 15, 2011 at 1:46 am #

    Hey guys…well you all couldn’t have been more right! Just to be clear, my wife is fantastic, and I am notorious for ignoring health problems. Plus, I don’t think either of us understood the severity of the situation. So to reiterate, I wouldn’t have made it to where I am right now without her, and when I go back and read this it makes me feel terrible for painting her in that light.

    So, The morning after I sent my story, I had to pull over twice on the way to work to rest because I didn’t have enough energy to stay awake at the wheel. Once I finally made it to the office, I spent about 30 minutes in the bathroom and finally sat down at my desk. I felt like I was on my deathbed Tuesday….but I was somehow feeling much worse. After trying to sleep it off for an hour I finally broke down and asked my sister to come pick me up and take me to the ER. My doctor recommended a hospital, and I was getting an IV less than two hours after the phone call. I was severely dehydrated (despite all the freaking water I tried to choke down!) and slightly anemic.after a few hours in the ER, I was admitted into the hospital.

    I have been at the hospital since last Wednesday, with the antibiotics, steroids, fluids, and rest I have gotten some slight relief from the volume and frequency of bowel movements. I began with Morphine, Cipro, Flagyl, and saline in the IV along with jello and water as I could stomach it. After a few days went by, I was able to reduce my bowel movements to 15ish times a day. When having these, there was less pain and significantly less blood. Taking this as a good sign…I decided to do some soup broth Friday night. Oooooh weeee was that a reality check! I was jumping out of bed with no notice again and fell right back into my old symptoms. At this point, my days consisted of a pain level 6 or 7 (as good as it gets) until the pain medicine began to lose it’s effect. Usually an hour or two before the next dose. I am doing my best to hold off bowel movements until just before another dose of pain medicine so I can use the relief to rest. The vast majority of my suffering is from SEVERE abdominal pain which is greatly exascerbated by changing positions (getting up and laying back down). Since we have seen such little improvement, the doctors have changed up my steroids and antibiotics a number of times. I received a CAT scan on Wednesday and Saturday to verify that no abscesses had developed in my abdomen (which they haven’t). The diagnosis stands as a severe flare-up, horrific abdomen pain, and increasing distension in my stomach.

    I had a consult with a surgeon this morning to discuss a possible ileostomy. He was very clear about not wanting to push it until we have explored all other options, but I was ready to jump on the opportunity given the level of suck this week has contained. Right now, the GI has increased my steroids as a last ditch effort to get things under control. Here I am, 330 AM on the toilet wincing in pain as I count down the seconds until my next round of pain meds.

    My question now is this:

    I have done plenty of research on the pros and cons of surgery, and told myself that I would be all for it if it were suggested. BUT, my dad and stepmom (who is also a doctor) were flabbergasted that I would even consider it without receiving a second opinion. I know this is my decision, but my stepmother is a very smart woman, and I can’t help but wonder if she has a point…

    I will definitely be talking with my GI again, including anyone else I can think of that might be able to contribute. But what about other UC’ers? Do you think she might not just understand ALL of the benefits of surgery? Do I need to reitirate the impact my age has on the feasibility of the procedure? How can I approach this without feeling like I’m snubbing anyone?

    Thanks again for everything. This means the world to me.

  8. michael August 15, 2011 at 5:20 am #

    Look into the SCD diet. It works!

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