Sunday, August 2, 2015

Back in the Fight

Well guys, the end of Stelara came during November 2014.  It was a good run - 3 years on a biologic is pretty good. I had to be hospitalized on New Years Day for a Crohn's flare.  Spent 3 days in, but not much better, as they didn't send me home on prednisone.  Called my gastro and started on 40mg on Jan 5, 2015.

Also started going to the local Pain Clinic.  My dr is amazing.  He raised my Fentanyl saying that I wasn't absorbing the oral pain meds - maybe 25% on a good day.  Left there and didn't take another oral pain pill for several weeks.

Then came Feb when I started a new biologic Crohn's med called Entyvio. First treatment on Feb 13.  Ached like crazy for the next 4 days and had extreme nausea and vomiting - common side effects for the first few treatments.  Two weeks later was the same story.  During this time, I also had 2 colonoscopies and an endoscopy.  Showed active crohn's - yeah I knew that. 

The pain was getting unreal. Eventually, my whole left leg became swollen. The joints locked from the inflammation.  The ankle was so bad that I thought I had torn the Achilles tendon.  Took a full week to be able to even put pressure back on my left leg.  I had to use a walker or hop through the house.  Went to the ER on Sunday night and actually fell in the bathroom as their wheelchair didn't fit through the door.  I tried to hold on to items but missed and fell on my hip.

By mid March, the skin lesions (pyroderma gangrenosum) came back.  At first it was mild, knots in my hand and feet, very sore but didn't rise above the skin.  In April, Imuran was added to help the Crohn's and the PG  .Then came the treatment on May 28.  On June 1, I woke with 1 very large lesion on my left leg.  By evening June 2, I had 18 lesions on both legs. I had difficulty walking.  It felt like my bone marrow was on fire.  Round of prednisone and it started to heal - until I dropped the dose.

June 17, I had a biopsy which showed nothing in particular.  No one could make a decision on what was the cause, so no treatment could be started.

Between Dermatology and Gastro, they decided to do the Entyvio at 6 weeks instead of the 8 week protocol.  This made the lesion explode.  I kept going back in to derm and gastro begging for help - and several trips to the ER. I told a couple friends that I believed having my leg removed would be less painful than the PG.  

Pyroderma pain is like no other pain I have experienced.  Think of having the worst toothache ever - but expand it to the whole leg. Then rub Habanero pepper over open wounds. Now, take a hot iron and press it into the skin till it burns the skin away - and I'm not done yet - there is burning pain coming from the bone marrow also.  Lastly, add electrical shock to the lesions.  This is the best way I can describe this pain.  It is something I would not wish on my worst enemy - but I can tell you that this would be the best way to get any one to confess to their crimes.  Give them this for 1 hour and tell them you will end the pain if they lead the detectives to the body.  It would be the best way to get any and all information from terrorist too.

I went to Mayo on Tues morning (July 28, 15) and I stated I was not leaving there till I was admitted.  I knew that I needed IV steroids to bring this under control.  Dermatology wouldn't admit no matter how much I cried and begged.  If the lesion was not open and bleeding, they couldn't.  Did my lab work and my gastro called.  She told me to go to the ER and explain this - that I was in a crohn's flare (though I feel better with the new med, all tests so active crohn's).  This causes me not to be able to absorb oral meds.  She told me that if the ER needed her, she would explain this to them, but she couldn't tell them to admit me.  I wasn't in the ER for even 45 min and admission papers were started.  One dose of IV steroid and 1mg Dilaudid had me the most pain free I had experienced in over 2 weeks.

But by Wed, they were ready to take me off the IV steroid and IV pain meds.  I told them okay on the pain med but don't touch the steroid.  My gastro stepped up for me again and they kept both, but dropped the dosage of pain med.  Thursday morning, my leg looked 100% better and I was going 8 hours between pain shots.  And the best news was, I was at least able to bend my knee and put pressure on my foot.

Got several med changes also, but these are the ones I had asked about for at least a month.  Took them in 2011/12 and it brought the pyroderma gangrenosum under control.  Dr is thinking of adding a different immune modulator soon, as this med can only be used for 2 years then have to be off for 2 years.

Because of Entyvio, Prednisone, Cyclosporine (and remaining Imuran) I am extremely immuno-compromised. The drs added Pentamidine to prevent pneumonia. They had to put me in a box with plastic wrap around it. No one could come into my room for an hour after the treatment. It is once a month. Will have to travel to Mayo for this also.  It is usually used for HIV/AIDS patients along with those who have had bone marrow transplants.  

Between now and the end of the year, I will be traveling to Mayo Clinic in Jacksonville every 2 weeks.  At least once a month, we will have to stay overnight to allow me to recover from the treatments. 

Each Mayo trip is a 500 mile round trip and average cost for trip and overnight stay is around $300. Sometimes an overnight stay will easily turn to a 3 to 4 night stay due to side effects.  Hotel is between $75 and $109 (tax is included) and food for 4 runs $15 to $20 a meal (we eat dollar menu and often get TV dinners or lunch meat from the grocery store). We have been doing this for almost 5 years (Sept 23, 2010 was first trip).  

Our family has uncured extreme debt due to all the trips, medical ins, and prescriptions.  I am not including my sons or my parents ins or Rx's in this - my bills run around $600 a month without travel expenses.  Parents and son's expenses for ins and Rx's are around $850 a month.  

I do qualify for Medicaid but they wouldn't cover even half of my Rx's nor would some of my drs even treat me.  I would be dead if on Medicaid.  They would tell me just to get the bag again instead of paying $15,000 (yes, 15 thousand dollars) every 6 to 8 weeks for 1 medication.  The last one I was on costs $23,000 every 8 weeks and it wasn't even approved for Crohn's yet. 

I don't have disability yet either.  Been fighting for it since Aug 09 and am denied each time, and lost the appeal battle so I have to start over from the beginning again - as they say Crohn's isn't in their list.  But I am 37 years old and have 38 major diagnoses - even bone death from years of steroids.  I take 27 Rx per day (multiple tabs of most of those) and then I have more meds given at the Dr office - for a total of 34 regular meds.  This doesn't include emergency medications like antibiotics or cough meds when I have bronchitis. 

My family is in desperate need for financial assistance at this time.  I owe over $12K at Mayo but we are in a payment plan right now.  They ask for 10% of the bill monthly, but we can't do that.  My parents don't bring in enough in retirement and SS to even pay the reg bills and medical costs.  Need another $800+ a month to handle that. 

Our car has 247k miles on it and it won't be long before it goes.  My dad keeps it up, but at 14 years old and that many miles, we are not going to see many more trips on it - esp adding over 1,000+ miles a month to it.  I do have my car that was totaled last year (repaired and had to go through state inspection to get it back on the road), but it barely has an AC - it blows but not cold air.  We have been dealing with heat indices around 115 all summer. It has 198K miles on it at 19 years old.

We are doing everything we can to bring in money.  I make jewelry and now have a retail outlet (a gift shop at a local aquarium), but I have brought in $52 in the last 2 months, Total sales this year has been $127 - for 7 full months. Some months at the consignment shop, I lost money due to giving 50% of the sale to them and paying taxes.  One month sold 3 items and my check was $7.53 cent. Dropped them after 3 months.

I am asking for prayers also - mainly to get back on my feet and not need all these medications.  Many of them have horrible side effects that have destroyed my body and cause me to have to take 4 and 5 other Rxs, some issues I will not recover from without surgery. For example the bone death. Only having a hip replacement will fix this.  Just found out that also the Tibia of the left leg is beginning to die and crumble.

 Second is that we have a financial miracle to cover all our needs - that I am able to sell all the jewelry I have on hand.  I use birthday and Christmas money - and 20% of previous sales to reinvest in supplies.

I will share more about Osteo-necrosis and pyroderma in another blog. Will also share my med and diagnoses list with information about each one in the coming days.

Thank you all for reading through this and praying.
God bless 

~Joy and the Odom Family

Wednesday, July 23, 2014

Lists and Lists....

Okay, I start PT in less than 12 hours. I had to write out my med list for them. Though I don't take all these meds every day, I do have them in my bag at all times, I freaked out when I typed them all. 29 Rx meds and 18 OTC/Herbal/Vitamins. DANG!!!! The form I had to fill out only had space for 14 Ha! I bet they thought that was plenty of room.
Then wrote out the allergies - 9. They gave space for 3.....
Lastly Dx's. 1 and a half lines on a paper. It took 2 printed pages - 1 per line double spaced.... 33 illnesses..... I feel like I am falling apart after that. I laughed when I told my mom that I am very happy to say I am 36 years old - just happy I made it this far.

Diagnosis List
1. Crohn's 
2. ulcerative colitis 
3. short bowel syndrome
4. GERD - Acid Reflux
5. pyroderma gangernosum - skin lesions caused by Crohn's
6. erythema nodosum - - skin lesions caused by Crohn's
7. anklosying spondylitis - form of arthritis in spine and hips
8. entero-pathic arthritis - also called reactive arthritis (mainly fingers and toes)
9. stenosis of the spine (C-spine)
10. osteo-arthritis (shoulder and hips)
11. L4/L5 bulging disk
12. Tendonitis
13. Bursitis
14. fibromyalgia 
15. diabetes 
16. high blood pressure 
17. adrenal failure/ adrenal insuficiency 
18. osteoporosis 
19. osteonecrosis of the hip - bone death
20. acute renal (kidney) failure (last one in May 2012)
21. kidney stones
22. restless leg syndrome 
23. anemia of chronic illness  
24. chronic fatigue syndrome
25. chronic pain
26. carpel tunnel syndrome (2nd degree)
27. migraines 
28. asthma (under control)
29. bronchitis (under control)
30. profound hearing loss
31. cataracts
32. glaucoma
33. costochondritis
34. tachycardia
35. depression
36. anxiety

Med List

Rx List

1. Stelara 90 (every 8 weeks)
2. Dexalant 50 (once day)
3. BellaDonna Liquid (1 to 2 tsp 4x day as needed)
4. Dicyclomine (2 pills every 6 hours as needed)
5. Zofran 8 (every 8 hours as needed)
6. Prednisone 5 (on hold for emergencies)
7. Fera-Hem (every 6 months)
8. Levimir (20 units 2x day)
9. Novalog (Sliding Scale)
10. Byetta 10 (once day)
11. Lasix 25 (3x a week, use daily during prednisone treatment)
12. Nifedipine 30 (once day - have had to take 2 pills 2x day during prednisone use)
13. Metoprolol Succ ER 25 (once day)
14. Clonidine 0.1 (3x day as needed - BP over 170/100 or pulse over 120 sustained for 10 min or more)
15. Lyrica 50 (once  day)
16. Tramadol HLC 50 (1 every 8 hours - as needed)
17. Norco 10 (1 every 6 hours - as needed)
18. Fentanyl 25 (1 patch every 3 days)
19. Zanaflex 4 (1 pill every 8 hours, or 2 pills at bedtime)
20. Flector Patch (1 patch every 12 hours as needed)
21. Compounded Cream with AM 8%, TM 1%, BC 2%, CZ 2%, DC 3%, GB 6%, OR 6%, LC 2.5%, (1 pump every 6 to 8 hours to each affected area)
22. Sulfazine EC 500 (2x day)
23. Doxyclycline Hycalate 100 (2x day)
24. Benzonatate 100 (every 4 hours as needed)
25. Proventil HFA (2 puffs 2x day as needed)
26. Dulera (2 puffs 2x day as needed)
27. Xopenex Nebulizer
28. Ativan 1 (every 8 hours as needed, or 2 pills for migraine - use for anxiety, nausea, and migraines)
29. Pristiq 50 (2 pills at bedtime)
30. Reclast (every 2 years)

OTC Meds and Herbals

1. Arnica Gel
2. Arnica Tabs
3. Gas-X
4. Charo Caps
5. Tums
6. Mesclizine 25 (1 tab every 8 hours)
7. Zyrtec 10
8. Motrin
9. Vit D (50,000 mg once weekly)
10. Calcium
11. Valerian Root 400 (2 caps nightly for sleep, 3 caps 3x day for diarehea)
12. Milk Thistle 240 with Licorice, Dandilion, and Fennel (2 caps 2 daily)
13. St John's Wort 300 (2 caps 2 daily)
14. Glucosamine/Chondrotin (2 caps 2 daily)
15. Vit B Complex
16. Vit B-12
17. Green Tea Extract
18. Niacin

Saturday, May 31, 2014

Car Wreck - Jan 17, 2014

On Fri evening, Jan 17, 2014 I was driving around waiting till my son woke from a nap.  We had plans to attend a Bible Study that my friend was hosting.

Driving down Ledo Rd was a normal part of our life, as this is the location of WalMart.  I was in the inside West bound lane, headed towards HWY 82 when a Chevy Suburban pulled out in front of me.  I couldn't break fast enough. Elijah was sound asleep in his booster seat.  His neck was dangling out of the seat.

There was nothing I could do for him or myself  - I just prayed that there wouldn't be serious injury.  Everything seemed to happen in slow motion.  I slammed into the back side of the SUV.  Saw parts of my car fly in the air.  As fast as that happened, the vehicle turned around, leaving skid marks on the road. They pulled back into the WalMart parking lot.

Then Elijah woke crying and asked what happened.  I told him we were in a wreck. Before I could get him calmed down, a man was knocking on our widow.  It was an off duty police officer.  He was already calling the accident into the police and finding out if we needed an ambulance.  Several other people were stopping and talking with my by this time and did what they could to help us.  Elijah was so upset. I finally got him out of his seat and had him up front with me.  Called my mother who was in town a few miles away.

Lee County police arrived and took our statement and had a wrecker on the way.  Elijah finally got out of the car with Grandma.  When he got out, he said his neck was hurting and he had a headache.  Little did I know that this was just the beginning.  One of the witnesses said she saw the driver throw something in the trash before walking up to the road.  The man that said he was driving was the one that got out of the passenger side according to the witness.  He was 20 years old and was on a learners permit.  The one that she said was actually in the drivers seat was 22 with no license.  There was no licensed driver in the vehicle either - 5 people between 11 and 15 and the 20 and 22 year old.

Police took the statement of 1 witness who saw the wreck but did not take the statement of the other witness. He told her to hang around for a while.  He let the driver go and never came back to take the lady's statement. She did give us her name and phone # in case we ever needed it.

Mon morning, Elijah and I both went to our drs.  No x-rays were done.  We were both told that we had whiplash. I was given a compounded cream for inflammation. Then Fri we went to an ortho.  I received x-rays and was told I had whiplash and had inflammation in my shoulder and told to go to therapy. Nothing was done for Elijah there either.  He was having headaches every couple of days. These headaches sometimes would last for 2 or 3 min and be over with.  But they started coming more frequent and with greater intensity  Some days he would have 5 or 6 episodes over 2 hours, the first would be mild and last 2 min, then each one after would progress in length and strength, then finally back off.  Some would cause him to fall to his knee screaming, break out in a sweat, and all color would leave his face.

We were later sent to a neurologist in Macon about the headaches.  This was now about 6 weeks after the wreck and Elijah still had a stiff neck and did not have full range of motion.  He was given Elavil to help with the headaches.  All it did was make him more hyper and interfered with his sleep.  A couple of weeks later, he went back to his sleep dr and she changed him to Depakote. Same thing again. I have taken both of these meds in the past as an adult, even the same dose as Elijah, and they put me to sleep in a few minutes.  I was unable to function with Depakote.

On April 24, we were on our way to Macon to Elijah's gastro and he started to scream and hold his head.  For the whole 2 hour trip he was like this. We had to make several stops so he could throw up. Got to his dr and Elijah didn't want any light on.  He also wanted me to lay on his head or put some sort of pressure o it.  His dr walked in and talked to us for a min and Elijah started throwing up again.  He told us to get to the ER and have him checked out as something serious could be going on.

6 hours after the headache began, it was finally over.  Elijah received a CT scan at the ER. This showed that Elijah has 2 vertebrae that have been shoved forward by the impact of the wreck. If the dr had done the x-ray at the beginning, maybe Elijah wouldn't have dealt with this much pain.  As we were coming out of the ER, Elijah was riding in a wagon.  I was going to bring him down the handicap ramp instead of making him walk down the stairs.  Well, the wagon picked up speed and nearly got away from me.  I moved someway to keep it from running over me, but instead I fell down and was dragged at least 5 feet, if not more.  My knee was scraped up and bruised. Also my hip was bruised badly.  Over the next few days, I found it difficult to walk or lay on my left hip.  Back to Elijah.

The ER dr suggested having an MRI done, but we can't get any dr to do one.  We later called the ortho that saw us in Jan and asked him. The lady at appointments said that she would see if he would schedule an MRI before hand so we could get the results sooner, but she saw that we had a balance and she couldn't make an appt till we paid.  We brought the CT in a few days later and paid the balance of the bill (that the insurance didn't pay). After we paid them, we were told quite rudely that this dr didn't see children and we would have to go elsewhere.

I called the neurologist a couple days later and he changed Elijah's med once again - to Tegretal.  This usually works great for migraines (which he says Elijah has).  After starting this med, the headaches continued and it still caused sleep issues.

Before April 24, I contacted Mayo concerning the shoulder pain I was still having and asked for a 2nd opinion.  After the fall at the ER with Elijah, I called and asked them if they would do an x-ray of my knee and hip also.  Knee was fine, except for inflammation.  The hips were another story.  It was nothing to do with the wreck, but it was a fortunate find.  I was diagnosed with osteo-necrosis in both hips, with the left one being the worst.  I'll talk about this in another post.

With just the shoulder x-rays they couldn't tell much so they set up an MRI.  I had the MRI on June 21 and told that I have a labral tear, tendinitis, bursitis, and osteo-arthritis. The tear, tendinitis, and bursitis have been caused by the wreck.  Still waiting on the hip MRI and surgical consult on this.

We had a trip on May 23 to see the dr.  Yet again, another med change. This time to Neurontin. 4th medication less than 3 months.  This med was another bad one for Elijah.  No sleep, but it changed his mood.  He became violent with us and himself.  The least little thing would set him off.  Not being able to open a package or the computer going dead - or just speaking to him.  Sometimes he would begin to beat me or Papa, throw things and try to break them, or beat himself. Then he would just sit down and cry.   I gave this to him on Thurs, Fri, and Sat only. His moods got worse day by day.  Tues he finally started acting better.  He would look up and laugh again.  He still has moments where things set him off and he gets angry, but they are getting better.  Not yet a week since his last dose of meds, so it may take a few more days to get it out of his system.

On Wed, May 28 I called the Neuro and told him what was going on and that I had taken him off the Neurontin, but I didn't want to try another med right now.  Elijah needs a break from these meds for a while. Not sure what we can do for the time being, but something has to be better than guessing.

Once Again, The Good with the Bad

It seems that I always write my posts in the middle of the night.  I guess that is when things are the most quite at my house.  Been almost a year since the last entry.

We are celebrating 35 years at this house on the 1st, my mother's 70th birthday on the 2nd, my birthday on the 29th, and my son's on July 1 (and several other family members in between).  Also we are excitedly awaiting the birth of a precious baby boy to my cousin..  Little Landon will be loved by many and was deeply loved by his grandfather Randy (my mother's brother).  Little Landon won't know the love of his grandpa though, as he passed away from his battle with cancer on May 4, 2014.

There has been a lot of changes since the last post.  Crohn's is under better control with the Stelara 90.  Since Jan,  I have been able to receive the injection at home. This has cut out some of the appointments at Mayo.  No issues since I had a minor surgery on Dec 21, 2012 with the lesion, so I have been dismissed from the dermatology group - but can go back any time if I need to.

Elijah started kindergarten on Aug 19, 2013 with the Georgia Cyber Academy.  The cyber academy was the best decision for my family and my son.  With us on the road so much with out of town doctor appointments and hotel stays, Elijah would miss too many days of class and would fail.  The cyber academy travels with us and it is just as flexible as traditional home schooling.  It is not Mon-Fri 8 to 3. We work at night and on the weekends, change vacation days to when we have out of town appointments.

He started seeing a sleep specialist in Oct.  There were times he wouldn't sleep but 2 hours in 34 hours.  The doctor put him on Clonidine - that was the worst mistake ever. Only 4 days on that medicine and Elijah is still dealing with nervousness (7 months later).  He was terrified from nightmares and even felt that something was watching him and following him when he was awake.  He went from a happy and cheerful child to one that wouldn't leave the bed for a week. I couldn't even walk 1 foot from him without him going into a tantrum. He slept with the light and TV/music on till March. He started back doing this after another med switch this past month (more on that later).  On Oct 29, Elijah was switched to Remeron.  He slept peacefully since (except when other meds were added).

Christmas was very good for Elijah. We got great deals. He got his first computer - a touch screen laptop for a little over $225.  Only missing a DVD player, so that has been a bit tricky, as his school sent several DVD's.  He also got a WII with Skylanders Giants for $99!  The Giants Starter Pack was $75 regular price and the Wii is usually $159.  Plus he received several book, a RC Race Car, fishing rod and tackle, and a BB Gun.

Elijah and I were in a car wreck on Jan 17.  My car was pretty damaged, but we are hoping to repair it and get it back on the road soon - just still going through all the legalities.  It was a good car, so many memories.  I had just got it back on the road Mother's Day weekend 2013 - so only 7 months.  We were beginning to make new memories in that car, memories of singing and laughing, blasting music with the windows down while drinking Sonic Slushies.  I will talk more about the wreck and the associated issues in the next blog.

On May 23, Elijah graduated Kindergarten with straight A's. I think his lowest grade was Phonics with a 94 average.  His math and science scores were near perfect.  Waiting to receive his official report card and his end of school Evaluation.    Then we start all over again Aug 18 for 1st Grade.

Monday, June 17, 2013

Been A While

HI all, been awhile since the last update.  We haven't had internet access for a while and our computer broke (hard drive failure).

I am currently at Mayo Clinic prepping for a colonoscopy. Been having minor Crohn's flares for several months, so they thought it was time to do the check will giving me the Stelara shot.

Nothing much exciting has been going on for a while outside of a few rearranging furniture.

Back in Jan 2012, I was taking 26 medications plus 3 at Mayo.  It totalled 48 pills a day.  Now, 18 months later I take between 12 and 13 meds (including the Mayo ones) and it only totals 16 to 17 pills a day.

Things are so much better.

Will give another update tomorrow after we get the results.

Friday, December 7, 2012

Metastatic Crohn's

As I was mentioning in the last blog post, I have been dealing with a knot under the incision site since February. My drs were hoping that as the Stelara increased, this lesion would not come back.  I had the Stelara on Oct 10.  By the first week of Nov, this lesion was back.  

On Nov 13, I went back to Mayo Dermatology. Everything went fine at the Derm office. Was expecting a steriod shot. She and the head Derm said this was the strangest thing they had seen. Even though it was dx'd as Metastatic Crohn's (by my local gastro), the biopsy didn't prove it or deny it. With it coming back after raising the dose of Stelara, the derm thought that it had to be something more.

They suggested it could be a fistula from
the skin to a cavity somewhere else in the skin. So they suggested a surgical consult. I told them I saw one on Sept 9, 2011. She called over there and he was free so told me to come on.

I got there and he suggested it could be a suture that didn't disintegrate from Jan 2010 surgery. So, without any numbing, he cut the skin and started digging around in the area with something similar to a crochet hook. I was near passing out from the pain.

Then the worst part - if you have ever had an open wound, you know what Silver Nitrate is. It is this gray looking stuff on a q-tip. And it burns like fire. He placed the silver nitrate in the hole and around. My whole stomach felt like it was on fire - all the way from the center to the ribs. I was dizzy and crying when I walked out of the office.

And still no closer to resolution!

Here we come a few days later.  I started coughing (and so did my son).  His dr said he was fine, just allergies, but I was told that I probably had viral bronchitis, but due to the meds I am on, she wanted to put me on an antibiotic and a medrol steroid pack.  I had a Roboxin shot and a steroid shot. This was on the 15th (the Thursday before Thanksgiving). By Tues, my son was burning up with a fever and aching.  He had the flu.  Started him on TamiFlu, 2 weeks of antibiotics, and a cough med. 

Several days after Thanksgiving, I had to call back to the dr and she gave me a 2 week round of another antibiotic.  Here we are Dec 7 and I am still coughing, though getting better.  Mucinex makes things a lot worse for me.  Started taking it and I felt like I was dying - not really, but I couldn't breath and wanted to do nothing but lay in the bed and sleep. Stopped that Tuesday night and can actually breath again.

Well, due to being sick, I can't have the Stelara shot at this time.  Supposed to have taken it on the 6th, but will probably be around the 17th-21st. And the lesion is BACK.  Only this time it has come back about an inch from the wound (the one that came up in Aug and still hasn't completely healed).  I have the wound with a scab over it, yet it has a hole in the center that is about 3mm deep and 2mm wide. 

This area above is sore, red, and hard.  I called back to Mayo today and spoke with the surgeon's office. When I get the Stelara appt, they want to see me.  The derm office as exhausted their resources and research.  The surgeon mentioned last time that they might have to do exploratory surgery to see if they can find the cyst/lesion.

I will know more in the next couple days on when my trip will be scheduled.  Will post another update as soon as I get this information.

 God bless

Saturday, October 13, 2012

Been a Good While Since the Last Post

Wow, can't believe it has been over 6 months since the last post.  A lot has happened since then.  More than I can begin to tell in this update.

I did get the Stelara shot in Feb and while at Mayo, discovered a small lump in the incision site.  Was a bit concerned that it was pyroderma.  The drs didn't seem concerned at all.  After a couple weeks, it went away. Then it came back in April, just as I was going in for the Stelara (which was moved to every 8 weeks).  This time, the lump was large.  I was admitted to the hospital for observation.  A CT scan was done and they found a large mass slightly smaller than a golf ball with inflammation to the stomach muscle.  They discovered that the crohn's was still active, but was under better control than in Aug (when this blog started)

A biopsy was done and everything returned negative.  Slowly, it started going down again.  I made it through June with no returning of the mass.  But Aug came around (and time for the Stelara shot), the mass was back and very painful.  It was 3 more weeks before I could get the shot.  I had 3 Mayo trips that month and 2 to Macon, Ga back to my surgeon.  I had hoped that he might have a clue to what was going on.  Sadly, he didn't either.

Mass did the same as before, it would open and drain for a week and heal over.  Had the Stelara on Aug 28 and things began to improve (except for the whole family getting the flu - dad had it a few days before we went)  Before long, mom had pneumonia. Finally in late Sept, I went back to my hometown gastro.  Within minutes, he knew what this was. Cutaneous crohn's, also called metastatic crohn's.  I finally had an answer, but it was not what I wanted to hear.  Crohn's again was attacking another part of my body.  If it could not attack the intestines, it was going to attack my skin.  And the bad thing is, metastatic crohn's doesn't respond to prednisone and the traditional treatments.  Usually only heals when intestinal crohn's is under control and has to use biologics to bring it down.  Also, it is very rare.  My hometown gastro said I was the 3rd patient in over 25 years of practice that he had seen with this.

I am still fighting this, as Oct came around and nearing shot time, it has reappeared.  I went back to Mayo last week and the derm department did another biopsy (and a much deeper one at that) to look for granulomas.  And the gastro dept called and got the Stelara several weeks early - and they were able to double my dose.  I am now going to be taking 90mg every 8 weeks.

I am not sure what this dose is going to cost, but I found out that the 45mg that I had been taking costs $11,001 per shot!  Yes, you read that right, 11 thousand dollars.  I will know next month when we see the bill from the ins company what the actual cost is.  Thankfully, I only have to pay $76 for the shot. In Jan, that will go up again to $135 each shot, but will be for a few months before we get a discount again.

I just got home Fri morning from this trip. We are all pretty exhausted.  Especially my son Elijah.  He wound up with some form of food poisioning on the way down there.  He ate a half a buscuit around 9am Tue and by 1 he was sick as can be.  Later that night, he spiked a fever of 102.  This lasted till late Wed.  It was Thurs afternoon before he finally ate anything.  He seems to be over it now, but I can tell he is still a bit dehydrated.

Guess we are now getting back on our feet after this trip.  Gonna take it easy this weekend and be lazy.  Then Sunday morning, I am getting myself and Elijah back in church.  I miss my church family so much.

Love you all and God bless
~Joy and Elijah