No colon and rollin' but having trouble with blockages!

Well living with no colon hasn't been easy for me.  At first, it was ok and great.. no problems then the end of April, four months after my colon was removed, I had a very painful blockage that sent me to the Pahrump NV Emergency Room.  I had a friend take me, Melinda.  I had to drive to her house, her teenager was using her car, and she took me to the ER.... I was in PAIN the whole time.  My stomach felt all in knots and in pain.  I was having a small bowel blockage!  Argh!  I was nauseous and after being admitted, I threw up in a bag they gave me and wow I felt so much better!  But they wouldn't let me go home.  I had a Priesthood blessing by Brother Witten and Aimie's Dad.  That was so nice.  Melinda and Kelly arranged it.  Kelly was out of town taking a trailer up to Oregon when this all happened!   I stayed over night and they let me go home next day after they saw everything was ok.  My CT scan only showed inflammation of the small intestines, probably where the blockage was.  I threw up before the scan.  

Since end of April, I went on to have 5 more blockage episodes.  I went back to eating normal foods and wow did it kick me in the intestines!  I went to the Medford hospital when I was visiting Kevin, missed Aleah's  birthday party, but I did celebrate with her family the night before her party. When I'm in the hospital, the way they clear blockages is by putting an NG tube down my nose into my stomach to suck out fluids, that takes the pressure off and the blockage can pass.  If I throw up enough at home, it seems to clear.  I had two blockages at home that I was able to take care of myself by inducing vomiting and it cleared ok.  I was then hospitalized in the Reedsport hospital 2x in 10 days!  The CT scans there showed a herniated small intestine pushing up into my stoma area, causing blockages.  :(  Second time I went in at 10:30pm, the ER doc said I needed surgery, but when he called the surgeon on call, Dr. Lawson, the surgeon, said "Oh just put an NG tube down her throat and she'll be ok in the morning"  I was so mad!   I had my scans and xrays taken in Reedsport within 10 days of each other sent them over to my surgeon inn Las Vegas for her opinion on what to do to NOT have this keep happening.   She called me and said I needed to have surgery to have this fixed.  She said she could NOT do the reversal until I have it fixed and I'm healed up from all of this.  Well, Dr. Shank in Reedsport said he'd do it, but went on vacation for three weeks.  I was willing to fly to Vegas and have Dr. Wishev do it for me!  Then I went to sacrament meeting her in Reedsport and who was visiting?  Our stake president, who is a wonderful surgeon!  Kelly talked to him after the meeting and Dr. Tersigni told me to call his office Monday and schedule a pre-op appointment!  YEA!  So I've been in to see him.  I had my scans and xrays sent to his office and he knew right away I needed surgery.  It was not elective and needed fixed.  I was so glad to hear this... I've been eating soft foods and liquids for three weeks.  I have my surgery this Thursday, July 19th.  I'm glad this is getting fixed.  I'm so mad at the Reedsport surgeons and how they handled my care.  They didn't care.  All for the better because I have total confidence in Dr. Tersigni.      

 So I've been having Herbalife shakes, McDonald's shakes, V8 juice, juices, and soft pasta is ok and small amounts of bread.  I also figured out that cookies and candy don't block me, they are fine so that's hard.... cuz I just want to eat cookies all day!  Lol!
I went to my son's house in Roseburg and spent the night with him, his wife and four kids... we went to Cooper Creek Reservoir and had a nice Summer evening.  They brought a canoe and Brad and I took a turn canoeing a bit.  I enjoyed watching all the kids and Brad and Rashelle play in the water.  :)

Then the next day, Rashelle, me and the kids ran some errands and I left to go to Phoenix to visit Kevin and his family.  I brought V8, fruit snacks Herbalife shake mix and brownie bites with me.  :)  I enjoyed hanging out with Kaylynn and the kids.. they love to show me their room and their latest things they are doing.  :)  Kevin has access to these jet skis from work so he wanted to so a test run and invited me to come along!  He and the Young Men are all going to Lake Shasta for a week next week and the leaders are bringing boats and jet skis and canoes.  So.... I drove a jet ski on Emmigrant Lake!  It was sooooo fun!  I was a bit scared cuz there were a lot of waves and wakes to maneuver around.. but I had so much fun.  When I got tired, I got into another guy's boat while Kevin tried out his fast newer jet ski.  Then we went back to the dock to load up.  Well, today, two days later, I'm pretty sore!  I'm not in any kind of shape to do physical activities!  Lol.  But I'm happy I went with him.. fully clothed and all.  We wore life jackets, of course.  This photo is after they were loaded and we were heading out.

So life without a colon has been hard, but it will get better.  I'll have to heal up again.. but my wound will be in the same place, I'm glad for that.  When I left, Kelly said, "Don't go to the hospital!"  :)  And I didn't!
So next entry will be about my surgery to get all fixed up.  My weight is good and I'm feeling good, just kinda weak from having soft foods only.  I haven't had meat in weeks.  I think that is what blocks me bad.  Mashed potatoes or french fries, I can handle.. yea! 

Being active and in shape is not a guarantee

I was very active a year and a half ago!  I was attending FIT camps, walking almost daily, leading Zumba classes and attending Kettle Bell classes.  I went on hikes now and then and rode my bike when it wasn't windy.  Then, things changed.  Being active was not my guarantee against diseases or physical pains.  My body started acting up and no one knows why really.  I am writing this for awareness and maybe, just maybe, I'll come across someone who wants to reach out and we can support each other somehow.  

Today, I deal with a kind of rare auto immune disease called Ulcerative Colitis.  It is pretty uncommon or maybe I feel that way because when you DO have it, it's very difficult to talk about.  It's like a silent disease.  It attacks all different types of people, old, young, healthy, unhealthy, fit, sedentary, overweight and thin.  Who knows why.  When you have UC you don't 'look' sick.  You can hide it pretty well, unless you have a really perceptive daughter in law who sees symptoms pretty quickly.  My daughter in law noticed.  I was visiting their house and a few times, more than once, I had to practically jump up from the couch and head to the bathroom.  I was only there for a few hours.  She noticed that was not a normal thing for me so when I told her about my condition, she felt that she already knew and was not surprised.  

One of the symptoms of UC is urgency to go to the bathroom.  You don't have even a minute or second to spare sometimes.  The urges can come at any moment no matter where you are or what you are doing.  They can come when you are traveling in a car, working outside, walking around the store, or when you're a driver in your car.  It can be awful and paralyzing.  You wonder if you CAN go out and do something without having an accident.  I got to the point where I started wearing adult depends undergarments after not making it to the bathroom in time for a BM at home.  THAT was a horrific experience the first time! I was so embarrassed and shamed and upset, even though I was alone in my house.  As I was running to the bathroom, I just started going… it was not a great feeling.  I tore off my clothes, turned on the shower and jumped in.  I was in tears, crying and wondering how to stop this.  I did not want to experience this again.  I would experience it again though, quite a few more times.. after about the second time, I decided I needed Depends, at least until my symptoms could get under more control. 

The thing about UC, this Irritable Bowel Disease, is that there is no one path to relieving symptoms for everyone.  It’s so hard to figure out.  Medications that work for one person don’t always work for another person.  One drug may completely change someone’s life and symptoms, and for another that same drug won’t touch the symptoms.  Doctors and Gastroenterologists are practically ‘guessing’ which drugs to give you and which treatment plan is good for you.  I have taken 5 different drugs and paths and I still deal with bloody bowels, urgency, gassy bloody mucus, going to the toilet frequently at night and terrible body fatigue. 

I was diagnosed in March of 2016 after having a colonoscopy – It looked terrible!  My colon was all inflamed and red in the left side and the bleeding was BAD.  My symptoms started around Aug of 2016 with terrible gassiness and urgency, no bleeding yet.  Then around December of 2016, the bleeding started and it got really bad.  By the time I saw my primary care Doc and got a referral and appointment for a colonoscopy, it was March.  Then the diagnosis and I was referred to a Gastroenterologist in Las Vegas.  I made an appointment and I was off on a path of trying different drugs to see which one would work for me. 

The first line of defense with this auto immune disease is steroid treatment.  I was placed on Prednisone, a steroid, in different strengths to start out and taper off FIVE times over the next year.  It would stop the bleeding, mostly, but the drug I was taking along with the Prednisone would not work or keep symptoms at bay unless I was taking Prednisone.  Not good.  No one should be taking a steroid for long periods of time and in no way is it a long term solution.  Side effects for me weren’t really bad.. weight gain (I have gained 15 pounds over the past year since starting Prednisone), fatigue, water retention in my ankles and face and neck area (puffing up with a ‘moon face’), and my teeth became super sensitive to cold.  I feel like it is probably weakening my bones as well.  I should have a bone density test taken soon. 

I took Lialda – it didn’t touch the symptoms by itself and I was taking the highest dose possible.  I took another white tablet – I’ll have to look it up – that my GI thought would be the end all be all for me, it didn’t touch symptoms along with the Lialda either. 

Time for the big guns – Biologics.  Things HAVE to get better!  

More later –

Alaina, an Herbalife health coach living with UC