"So It's Like A Stomach Bug"

One of the things that annoys me the most is when I can't explain what it's like to have Ulcerative Colitis or pouchitis.  I have a difficult time explaining exactly what I'm feeling so it comes off minor compared to what I'm actually going through.  So many times the response from other people is "So it's like a stomach bug" or "I understand.  I have IBS."  Well it's not like a stomach bug, and I wish it was IBS.  I don't want to minimize these conditions because they are rough for the person who is suffering from them.  So here's my best attempt to describe what it's like to be in a flare.

First is the pain.  There are two types of pain when flaring.  One is the crampy pain usually associated with diarrhea.  This is the easier of the two pains.  The other is a sharp pain.  I have heard it best described as rubbing sandpaper on a sunburn.  Or as I like to put it, raking knives throughout your insides.  This pain can get very high and has stopped me in my tracks and kept me from bending in any direction.

Next is the fever.  When I flare I always get a temperature.  I don't know how you all feel when you have a fever, but I get body aches and chills.  My back kills me and I can never get comfortable.  Since my fevers always come late in the afternoon and evening, I usually have a hard time getting to sleep because of the fever. I'm a big baby when it comes to a fever, and this was always one of my worst problems when I had a flare.

Now it's time to talk about the diarrhea, everyone's favorite topic.  Remember the last time you had the stomach bug or ate something that didn't agree with you and you were in the bathroom every 15 minutes.  Well image how you felt then days on end, and with the diarrhea comes excruciating pain and spasms.  I can remember spending forever in the bathroom huddled in a ball, sweating bullets, praying for the pain to end.  I would finally feel able to leave the bathroom, but find myself needing to return just a few minutes later.  Day after day after day after day.

Well we have talked about the pain, the fever, and the diarrhea.  Now it's time for the biggest culprit and that's fatigue.  I can't find a way to describe the fatigue.  My best way is that it's like living in jello.  Every movement is so difficult and takes 5 times the effort.  When fatigue sets in I'm asleep by 8:00, needing to brush my teeth while sitting down (too tired to stand), and I can't walk more than 10 steps without getting out of breath.  Since the fatigue comes from so many places; blood loss, lack of nutrition, dehydration, and just your body fighting itself, it's hard to help battle the fatigue.  Resting doesn't even help.  It just leads to more need for resting.

I could go on with more of the symptoms of the flare, but they basically all lead back to something listed above.  I don't write this for anyone's pity.  People with IBD are strong and able to battle the flares.  I just want the person who doesn't have IBD to understand what those who do fell when in the midst of a flare.

Two Small Answers

I finally have some answers from my recent MRI.  I'm not sure what to think about the results and I have to admit they caught me off guard.  It's been one week since I've actually learned the results, and I'm still trying to process it.  Mostly because I'm in a total brain fog lately and can't process anything.

Final verdict is I have two small abscesses in my abdomen near my pouch.  My GI is not sure what is causing them, but believes it is a fistula that could not be seen on the MRI (they can be really tiny).  After googling the symptomsof abdominal abscesses I found that I met 5 out of 6 of the symptoms.  Abscesses never even crossed my mind.

I was prescribed Cipro & Flagyl, two antibiotics in the hopes that antibiotics alone will treat the abscesses.  Since starting the antibiotics a week ago I have noticed some improvements.  I am no longer bleeding.  I don't have any more spasms.  The fevers are gone.  And the pain has gotten much better.  I'm still not where I would like to be after a week on antibiotics.  I still have diarrhea.  I'm really weak and fatigued.  And I'm nauseous.

I am now playing the waiting game once again as my GI is consulting with my surgeon to see what the next step is.  I'm keeping my fingers crossed that a consult with the surgeon doesn't lead to another surgery.  My hopeful self just says the my GI needs to consult someone who knows more about the j-pouch and not the possibility of surgery.  We will wait and see!

Looking Ahead

Summer is just on the horizon and plans are being made.  This is the first year in the past 10 years I am making full on plans.  For the past 10 years I hesitated to make any sort of plan.  Even planning to go to the pool posed it's problems.

Two years ago my husband & I planned to go to the much anticipated Pavement reunion tour.  Tickets were bought months in advance.  Instead of rocking at a concert, I was spending day 2 of recovery from step 1 surgery in the hospital.

Last year plans were made for a weeks vacation at the shore.  I was feeling good before the trip, but after about 2 days in pouchitis reared its head.  By the time I got home I was in a full blown severe flare which almost landed me back in the hospital.

These were small plans compared to this year.  It all starts this weekend with my first concert since New Year's Eve.  It will be followed by numerous other concerts, trips to visit my parents at their home by the shore, picnics, and ending with a concert event followed by another week's vacation at the shore.  Tickets are bought, hotels are paid for so there's no turning back.

I am hesitant to get excited for the summer.  With so much to look forward to I am always waiting for the other shoe to drop.  It's always been summers when my IBD has flared.  I'm worried this year will be no different.  I'm already not feeling well.  Can this year be different?  I'm holding out hope, and for once will be making plans like I am not a sick person.  I can't keep sitting around scared to make commitments.  Living that way for 10 years is long enough.  So this year I am cautiously looking forward to the summer.

Real Estate w/ Chronic Disease

I am taking this from my recent real estate blog.  To find it in it's original form see here: Karen Nagy's Blog.

The real estate business can be hard enough in today's market.  Working in real estate while managing a chronic disease is even trickier, but it is possible.  My chronic disease is ulcerative colitis, and I have had it my entire real estate career.  I have learned some tricks that help me be successful while keeping both my clients and my body happy.
First is to know your limitations.  I can only do short showing tours.  After about 3 houses I am done.  There are also certain times of the day for me that are more difficult than others.  I try not to schedule any appointments during these times, instead I focus on mailings, social media updates, and phone contacts.  I usually give my clients a few different appointment times to pick from, and they generally do not have a problem with this method.
I also need to be selective of my clients, a good practice for any real estate agent.  I do not have the energy to take every person that calls my phone on appointments.  Instead during my initial conversation I will ask more probing questions to find their motivation.  If they are not willing to answer my questions, then they are not worth my time.  I find the more motivated a person is to buy, sell, or rent real estate, the more willing they are to give up front information to you.
Lastly is a back up plan.  There will be the inevitable day that I am too ill to leave the house or, in my worst cases, in the hospital.  I have found a couple of agents who are willing to sub for me in a pinch.  Of course this usually means some form of compenstation to the other agent if an agreement is made, but my client's happiness is my goal.  If you do not feel comfortable speaking with other agents about your illness, go to your Broker.  The Broker should be able to help you come up with a back up plan that works for everyone.
While working with a chronic disease does provide its extra challanges, it does not mean you cannot be successful.