Have You Ever?

Well, I experienced a first in my life.  I had to have a blood transfusion.  It was pretty crazy too! 
I was told by my GI in Las Vegas way back on Sept 8th that my bloodwork was bad, I was anemic.   That explains why I feel so weak and horrible!  So he said I need to see a Hematologist and get a blood transfusion.  Weeks went by and I finally got a call from the Hematologist's office.  They set me up for a new patient appointment in early October... well Wow, thanks.  I asked if they'd do the transfusion then, and they said no it was a new patient appointment.  Apparently my GI in Vegas didn't share his concern that I was super in need of a transfusion and to put me through ASAP.  Well... after feeling so awful for weeks (months really), I decided to go in to the emergency room at the Bay Area Hospital and have them to a transfusion.  So I did.  They took my blood for testing, even though I came in with a blood work paper from 3 weeks ago.  They hooked me up with an IV and my blood test results came back and the Doc agreed, I could use a transfusion. 

 Lol, I posted a video!  Yea, this was an experience.  Took 2 1/2 hours!  I rested and had a warm blanket and they kept coming in to take my vitals, of course.  I feel better, but not like super a lot better.  Probably because this is like a band aid remedy.  I need meds to stop my UC flair and bleeding asap.  Prednisone is working only so much and I can't up the dosage on that.  I'm taking 40mg daily until I get my infusions, then I'll taper that off.  NEED the infusions.  Apparently I'll be having Entyvio infusions, not Remicade.  I have messages in to my GI to get scheduled.. no call back yet.  If I don't hear from them by tomorrow Noon, Kelly, my husband, said I could leave a more aggressive message!   Oh, believe me I WILL!  I need relief!  So tired of this. 

Blood bag almost empty.. took a while so I got some good rest!  I drove myself from Coos Bay back to Reedsport.  Didn't affect me that much.  Look at my Moon Face!  Thank you Prednisone!  Can't wait to be done with you!  

Travelcation in making the business transition to Nevada

It's that time of year again where Kelly and I make the transition to relocating our RV camp trailers to Southern Nevada.  We drive our trailers down to Pahrump Nevada where we have purchased a home!  That's another topic though... we take about a 6 weeks to get our fleet down South and ready to rent the units at the Dumont Sand Dunes in CA.  Dumont is North of Baker CA and the Southern most part of Death Valley.  It's a beautiful place in the Winter and we enjoy the desert living.  We also enjoy getting away from the wet Oregon Coast for Winter.  We LOVE the Oregon Coast in the Summer, so we get the best of both worlds!  We see all kinds of weather on our trips, the transition from Summer to Fall is awesome and unpredictable.  I call our trips our "travelcation" trips and we enjoy our time together.  

We stop along the way at some kind of awesome motels too.  We've started staying off the beaten path and tried some small town flavor!  This Clown Motel is in the town of Tonopah Nevada.  It's a very small town with a few motel options, a couple fast food places and a gas station.  It's an old desert town with a museum too.  It's a place for people to gas up, get food and rest up if necessary.

The Clown Motel was interesting... the parking lot was packed!  Good thing we called ahead, we got the last room at 10:00pm.  The lobby was FULL of clowns and the man at the desk was friendly.  All paperwork, no computer and an old fashioned gold key for the door!  

We went to our room and Wow!  The positives were that the bed was comfortable and clean and the air conditioning worked.  THOSE are the most important things to us!  So the window was boarded up with plywood... made for a dark night's sleep and we couldn't tell when it was morning.  Lol!  

The shower was clean, but we had no towels in our room... Kelly went for towels the next morning so we could shower.  They were apologetic, saying the cleaning lady is new.  WELL... someone could have followed up with her and checked her work.. Ah well, we had a good night's sleep, all ok and we experienced the Clown Motel.  There was a photo of a clown over the headboard and a clown on every room door outside.  

So we made a trip!  I drove a truck and trailer down to Pahrump, following Kelly and then drove the truck back to Oregon.. we were in Pahrump for one night and left the next day.  That was OK because it was rather warm!  We checked on our house - we have contractors working on jobs for us - and they are making progress!!  So exciting!  

So we actually leave again in a couple days from Oregon to take another RV down.  Our son Daniel is on his trip taking one down right now, he'll leave tomorrow to come back.  It helps to have help and we love working with our son.  

Infusions every 8 weeks!!?

Well, I went to my GI in Las Vegas back on Sept 8 and first thing he said when he came in the room is "You're steroid dependent!"  Well, yea.  Prednisone (a steroid) is the ONLY thing that keeps my symptoms under control and half way manageable.  I am so frustrated.  Soooo.  He said it's time for Remicade infusions every 8 weeks as a RX path.  He has to get it approved by my insurance, then I'll get an appt.  He also said my blood work up is really bad.  I'm anemic and everything is low because I've been losing blood, bleeding from the colon for over a year now.  Right now, while on Pred, bleeding isn't real bad, but it is still bleeding on and off with a BM.  So he wants me to see a Hematologist and get a blood transfusion.   Wow, This was last Friday in Vegas, it's now Wednesday and I haven't heard from anyone about making an appointment in Vegas for these things to get taken care of.  I called and left a message for follow up.
I'm scared, kind of scared.  I don't know why my body isn't responding to RX the Doc has given me... my UC must be pretty bad.. he called it severe.  Scary.  I have gained like 20 pounds so I'm trying really hard this month to lose weight.  Prednisone make you very hungry.  I also feel weak so I feel like I need to eat.  This is causing weight gain and the Pred also makes my face swell up and my neck swell up... called "Moon Face"  Lol  not fun  I do not like the way I look right now at all, but I'm trying to keep a positive outlook and carry on with my days.  I work in our family trailer rental business and that keeps me busy instead of in bed all day like I would be if I didn't work.  Yep, I'd rather be in bed most days.  I get fatigued very easily with any activity.  When I go to the bathroom, it takes For.Ever to finish.  I still have accidents and that's so yucky.  Not very often, and so far I've been at home when it happens, thank goodness!
Being strong doesn't mean never crying.  It means that when you cry, you get up and carry on with life again and again and again.  I cry most every day.  I try not to but sometimes I am weak and tired and sad.  I'm hopeful about the Remicade infusions.  I'm in a group on Facebook that many people say Remicade gives them relief.  Doc says that if I 'fail' Remicade, it's surgery - remove the large intestines, remove the whole colon and rectum.  THAT would be life changing.. scary but some say it's the best thing they ever decided to do.  It's the only way to cure UC, remove the colon.  Who wants to live with this condition for the rest of their life?

Summer weekend in Tucson AZ

       

When your Awesome Dad turns 80, you call your brother and sisters and tell them you have a flight to go see him!  Kelly booked me a flight a few months back and let me know I could fly down to Tucson and celebrate my Dad's 80th birthday with him!  Sooooo sweet!  I was really surprised and happy about the trip.  So I group texted all my siblings and plans started in motion.  Everything for the weekend was planned and we were all excited to spend the time with our parents.  Dean, Dianna, Sherry, Rick, me, Selena and Sherry's daughter Tiffany were all there. Tiffany is living with my parents in Tucson at this time.  She's such a sweetheart and so fun to be around.  So... Selena and I flew in to Phoenix on the same flight from Burbank CA, and Dean and Dianna picked us up in a rental car at the airport.  They flew in from St. George the day before and visited their granddaughter for the day.  All worked beautifully.  We drove the almost two hour drive to Mom and Dad's and Sherry was there with Rick waiting in the car.  We all went up and knocked at the door and WOW!  DAD opened the door!!  We all started singing Happy Birthday and watched our Dad's smile get bigger and bigger.  He was surprised and so happy.  We went in, took some photos and were all excited.  We settled in for the night about 12:00.  Dean and Dianna went to a hotel, me and Selena slept on a mattress on the family room floor and Rick and Sherry had the guest bedroom.  Tiffany slept on the couch in the living room.  

Next day was Saturday, Dad's actual birthday and he mentioned to Mom that he wanted to attend the new Tucson temple on his birthday!  Well, we all brought our temple clothes and planned that outing.  It was a beautiful day, not too hot, but pretty warm for this Oregon girl.  The session was beautiful and full.  It was the first weekend the new Tucson temple was open since the open house.   I had a family name in my dress pocket to do an endowment session for.  I was happy about that!  I was also a little worried about my condition.  Would I be able to sit through a 2 hour session, no bathroom breaks?  It all worked out great.  I got up early enough to have breakfast and be ready.  After our session we went outside and took photos.  It was a beautiful day and we all enjoyed being together.  I didn't sleep very well there, but that's nothing new.  My sleep is interrupted several times a night.  Soon I'm hoping for relief and getting on a medication that works for me.. It will happen.  Praying it will happen soon.  

While we were at Mom and Dad's, mom had just gotten a new touch screen smart phone.  Sooooo we all took a turn giving her a hands on tutorial about how to use it.  She kept saying "I don't know how to work it" so we helped her and by the time the weekend was over, she was doing much better.  We set up google photos, pandora, her text messages, her phone and her LDS tools and library for her.  She was set.  Then Dad said she is doing more with her phone than he knows how to do with his!  So Dean gave Dad a tutorial about his phone and made sure he had google photos and everything he needed to work his phone.  Lol.  Dad's had a smart phone for over a year.  :)  

After the temple, we all went to lunch at a Mexican place that was like a Cafe Rio, Chipotle type restaurant.. you pick your ingredients like Subway on your burrito or salad.  It was super yummy and good!  OOOOOOoooo, when we got out of the car at the restaurant, I gave Mom and Dad a bag with a shirt in it to change into.  All of us kids brought BLUE shirts to change into... Mom and Dad put on the shirts that I designed with Stephanie's help and she made them for me.  They turned out GREAT!  Since 1937 Making the 80's look GREAT!  We took photos at the restaurant.  We visited a long time in the restaurant.  Was very nice..   After lunch, Dean, Dianna, Sherry, Selena and I all wet grocery shopping for the weekend's meals.  We had a fun time!  We shopped at the WalMart where I ordered Dad's B Day cake, and I picked that up.  We goofed off in WalMart and got all the food we needed.  Headed back to Mom and Dad's

Selena was our designated photographer, and we took photos when we got back to the house. We took a LOT of photos!  Lol.  Individual ones with Dad, group photos, sibling photos... it was a fun time!  Selena set up her camera and we posed for multiple family photos, all in our blues.   Looked so nice!  It was really fun.  Love family photo sessions!  

Then Dad blew out candles on his cake after we sang to him again.  Funny, but the wind actually blew out the candles before he could get to them.  :)  We ate cake and there were a few more presents to be given.  Selena painted a few scenery pictures and let Dad choose the one he liked the best for his gift.  

This weekend with my parents and siblings was soooo relaxing and nice.  We love getting together and when it's all over we always ask ourselves "When's our next get together?!"  We need to plan that.  Selena has a play she's in and that's in October in Simi Valley.  Sherry's girl Kristin gets back from her mission end of November.  There are things we could all get together for.  Our house is getting finished and in the early Spring will be ready for guests, I'm hoping anyway!!  

Love this family I was born into and I"m so grateful to have my parents still and feel their loving influence and prayers in my life.  Mom calls quite a bit lately, and I love it.  We are empty nesters, so talking to my Mom is great.  Mom and Dad are seminary principals and are up so early in the morning every day.  They LOVE the youth though, and they love them.  

Happy Family time, I hope everyone has family they can turn to, laugh and cry with and get support from.  

Alaina Muntifering

Herbalife Coach living with UC 

Medications, Doctors, Appointments, Oh My!

I added some photos of the area I live in on the Oregon Coast.  It's a pretty awesome place, makes me happy to get out and see the beauty of this world!  

I had to self medicate and put myself back on Prednisone a few weeks ago.  I had an appointment for my prescription epi pen Symponi to be delivered and the drug company called me and said my GI Dr Chen did not approve the refill!  Well… that was a shock.  He said he wouldn’t prescribe it until he saw me in his office in Las Vegas.  Hello, I’m living in Oregon for the Summer.  So.  It’s been interesting  When I was completely off of the steroid, just the Symponi alone didn’t keep my symptoms under control.  I was back to having urgency, accidents, up at night multiple times and feeling really tired and weak.  I had lots of gassy, bloody mucus and felt like the disease was taking over my life again. So, prednisone is my relief right now, but I don’t like being on it at all.  I have an appointment Sept 8 to see Dr. Chen in Las Vegas.  We’ll see what kind of path he puts me on then.  So far the only RX that has helped a lot is prednisone, but it’s not a long term fix. 

It’s hard to NOT let this chronic condition take over my thoughts and life all the time.  I always have to be aware of what my body needs.  I don’t have much time to find a bathroom when I need one, but being on Prednisone does help with control.  This Ulcerative Colitis makes me feel tired and old.  I don’t know if I’ll be able to have an active life again.  I’m tired all the time, bloated, hungry and so fatigued with any activity.  So I’m 55 years old and feeling that old.  It’s been two years dealing with symptoms and trying to figure out this disease.  It feels like forever and that I may not be able to be active again.  I sure hope not.  I can’t get a good night’s sleep, I’m gaining weight, I feel sluggish.  The hope is to find a RX that works that isn’t a steroid that will keep symptoms away and inflammation down. 

My colonoscopy I had in June showed great improvement so that made me hopeful.  The doctors said they’d stop considering surgery for me, thank goodness.  Who wants to lose part of their bowels and deal with all of that?! 

So I work in our trailer business cleaning trailers, supplying trailers, going to the laundromat, and some accounting work.  Some days we are very busy and I have no time to rest or stop.  Some days I lay down when I can just to catch my breath and rest.  Our business is doing VERY WELL!  We rent camp trailers along the Oregon Coast in Summer and at the Dumont Sand Dunes in the Winter… live in Reedsport in Summer and live in Pahrump in Winter. 

We just set up our Toy Hauler Vortex trailer for us to ‘live’ in on the business property!  I’m pretty happy about it.  We now have a full kitchen, full bathroom with shower, running water and a cook top and oven!  We lived in the ‘shop’ room with a bed, a fridge, a microwave, a hot plate and that’s it.  Our bathroom in there was only a toilet and a sink, no shower.  I would wash dishes and shower in any trailer I could find on the lot when available.  NOW we have our own trailer to live in.. we aren’t renting it anymore.  It will stay in Oregon.  Pretty excited and it feels so different.  Makes me happy to have the amenities most people take for granted.  It’s the little things that are the big things we should be thankful for ALL THE TIME!  Running water, a shower, a sink, an oven.  All blessings. 

 

Starting to feel better, but swelling happens!

Well, I swell when I'm on Prednisone.  My ankles decided to swell on one of our trips taking a trailer back up to Oregon.  The weather was warm and I didn't have sandals.  Ankle swelling was one of the first symptoms I had way back in Aug of 2013 actually.  No one knew why they were swollen then.  I had many tests done and nothing came up showing any troubles.  The only thing I didn't have done at that time was a colonoscopy, but who knew?   This time here, shown in the photo, I called my Dr. and I had an appointment with him in May in Las Vegas, with my GI, Dr. Chen.  He prescribed a tablet for swelling, but when he described the side affects, I wasn't thrilled.  I think I took one tablet.  My swelling here went away pretty much on it's own.  Side affects were dehydration and leg cramps.  He suggested I drink an electrolyte type drink.  I did drink my Herbalife CR7 to help, but I only took one pill.  The RX is called Ferosemide.  20 mg tablet.  I was happy my swelling went away!  Yes!   

AND, my face... it is swollen here.  I'm a sort of chipmunk cheek anyway, but this is pretty prominent!  I had a break down about how I was looking not too long ago... I'm NOT used to the way I'm looking now.  I feel swollen and like I'm looking older than I'd like to.  The weight gain has been a contributing factor as well.  
Soooo....  it's on to weight loss again.  My sister and I have made a pact to be accountability partners for the next 6 weeks with each other.  We BOTH want to lose some weight before we go to Tucson for our Dad's 80th Birthday surprise get together with our other sister, brother and sister in law.  We started today, Friday the 7th.  I'm sending her my weight tonight, just bought a scale for where I live in the Summer.. I haven't had one handy for a couple months.  It's hard for me to NOT have a scale!  We'll weigh in every Friday morning to help each other stay on track.
I love my sister, she and I get along so great and we snapchap and text each other almost daily.
I am blessed, so blessed.  I have a wonderful family who loves me.  We love getting together when we can.
More tomorrow, I hope I can help someone.  I have a weight loss plan and I can coach anyone from anywhere.  It's an easy plan and I'm prepared to really stick to it!  I haven't been sticking to it very well while I've been feeling crappy, literally.  Lol  But I feel like I'm ready, things are improving.. Oh, I've stopped eating MEAT!  I haven't had meat for over a week now.  I think it's helping me.  I waiting for my GI to get me a RX of Simponi 2x a month, and that's taking forever and it's very frustrating.  I have a case manager at my insurance company and they are trying to get the RX moving for me as well.
There is always something to be thankful for.  I love my family, my husband and my kids and grandkids.  They are the best!

This is the whole bunch!  Love them all!  All of this from our 5 children.  They are a fantastic lot of people!  

Biologics and Admitted to the Hospital

On to Biologics 

After coming off of a Prednisone taper, for the 4^th time in a year, I called my GI Doc and let him know bleeding symptoms were coming back and I was getting up at night often to go to the toilet.  Not fun stuff.  So, he let me know it was time to start a Biologic home injection regimen at home.  He called in a RX for Humira and I was contacted by the drug company.  We talked over the phone about taking Humira and set up delivery and an in home nurse to show me how to take the drug.  It all didn’t take very long.  The Humira drug company was great, very easy to contact, sent me information and a welcome kit right away.  The drug was delivered quickly.  I was really hopeful!  😊   So the day came, my nurse came and we got my FOUR epi pens out of my fridge!  Yep FOUR!  I was a little in shock about having to do FOUR shots at once, but she assured me that it could be what helps me feel better and I’d get all used to it.  I was scared.  Kelly was sitting with us at the kitchen table.  Here we go….. She did the first shot, then I did the next three.  I did the second injection and it stung SUPER BAD!  We did all four shots in my thighs while sitting at the table in a chair.    The epi pens are super easy to use, so glad they are NOT needle injections.  I would so cry if it were a typical needle type injection! 

An epi pen is a shot, but it’s unseen.  You push the epi pen onto your skin firmly, then push a button and the needle is released quickly and the medicine goes in smoothly and it takes about 10 seconds… super easy. 

So we did four shots and my nurse left.  I felt fine, went on with my days and didn’t see a whole lot of difference in my symptoms.  I wasn’t sure about it at all.  Then after about a week, I developed a fever, started slowly, like 99.0 and went up to 101.5 some days.  This fever knocked me to the couch and I was very fatigued and tired and sick and fevered for 18 days!  I had to cancel on some of my activities I had planned because I was too weak to travel.  My sister came over from Southern California on her way to Arizona to see our Nephew come home from his church mission after being gone for two years.  She was to pick me up and we were going to go together, but I was too sick and weak to go.  I felt awful about missing this trip.  My sister Selena made me feel better, just seeing her.  She hugged me tight and wanted to take my disease from me.  My fever DID subside after she left the next day.  Maybe her hug DID work!  😊  

I felt ok but I was pretty weak for a few weeks.  In that time, I took a trip to So California and met up with my sister and my daughter in Pasadena CA and we went to a Women’s Conference for two days.  I was very thankful I could walk and do that activity.  We had it planned for a few months back.  It was like a little miracle that I felt good enough to attend with them.  I sooooo needed it! 

So I didn’t take the next scheduled Humira injections, needless to say.  I called my GI Doc and he wanted me to come in to his office. I went in to Las Vegas to see Dr. Gary Chen and we had a discussion.  He was ready to have me go in to have infusions in the hospital, but I wanted to try a different in home biologic first.  He called in a RX for Simponi, a different, newer biologic for in home injections.  He called in for an injection every 28 days, one a month.  I took 2 injections to start the Simponi, along with a mega dose of Prednisone.. 60 mil taper!  So I took the Prednisone steroid for almost 3 months, along with Simponi every 28 days, but I couldn’t tell if I was feeling better (and I DID feel better!) was because of the steroids or the biologic.  Well, after the Prednisone taper came down and I was down to 5 mil Pred a day, my last week, bleeding came back.  Dr said he called in a RX for 2x a moth Simponi, but to this day I’m still trying to get that RX filled.  Dr. said they are waiting on insurance to approve it.  Insurance says all they have is a RX for every 28 days.  Run around!  My insurance co had a Case Manager call me and she’s helping me with this new RX getting approved.  So thankful for that.   

When I let me GI know that I was still bleeding and had symptoms come back after my last Prednisone taper, he told me I need to go to the ER and let them know I need IV steroids for severe Ulcerative Colitis.  I was in shock about that, but I did it.  They took me in, called my GI in Vegas, and he called them back.  The ER doc and Dr Chen spoke about my condition and they decided I needed admitted for a few days.  What?!  They took blood and my Hemoglobin was very low, thus no energy.. from blood loss.  So, I spent last Tue, Wed and Thurs in the Reedsport Lower Umpqua Hospital.  It happened so fast and I felt like I was in a dream.  This wasn’t really happening.  They asked me when my last colonoscopy was and I said it was when I was diagnosed, March of 2016 so they scheduled me one for the next day, Wednesday.. I took the prep Tuesday night, drank it all in one hour and was up relieving myself all night.  Not fun.  Then the morning of the procedure, the electricity was out!   The hospital was on generator back up and couldn’t do procedures without real power.  Makes sense, but I didn’t want to ‘waste’ a good prep!!  No One wants to do that more than once every 6 months or year!  Power came on an hour later and I was taken in first.  In house goes before scheduled procedures.  Cool. 

The results were good from the colonoscopy.  In March of 2016 the whole left side of my colon was red, bleeding and inflamed.  This time, all the inflammation and bleeding is down in the very lower part of my colon, the left side looked good and improved!  Great news!!  Before this procedure, Dr. Chen was talking about surgery and possibly taking out the left side of my colon.  Thank goodness we got pictures and that isn’t necessary at this time.  I to in for a follow up on the biopsies they took from all over my whole colon.

While in the hospital, I had injections of steroids every 8 hours, but come to find out, it was a pretty low dosage.  I think only 10 mil.  I got a lot of rest, napped a lot and stayed in bed!  Daniel, Stephanie and Kelly visited me and talked with me.. but I mostly was alone.  I needed the rest. 

So up to speed for today. 

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