2019 update

So im waiting on my keyboard to come in so I can really blog. It is so hard to do on a phone!

I feel like my Crohn's is the same. Same diarrhea, same pain. No change. My spondylitis is so bad. My sciatica is always hurting. Stelara isnt helping. I go to physical therapy once a week and it helps but after a day, im back in excruciating pain. But ill accept that day. It's better than nothing! Dry needling and massage is a god send. I highly recommend needling or acupuncture. You can actually immediately feel the difference! I get severe pain in my legs and this helps me be able to walk better. I love it!

As soon as my keyboard comes in, my posts should be much better and frequent!

Another Day of Me and Maybe More?

Originally this blog was started to help me process every thing I was going through with my stem cell transplant. Then after it all calmed down, i stopped writing. I automatically assumed I had nothing anyone would want to hear.

Im learning now, I need to write for me and in the process, I hope someone reads and relates. My greatest wish is that someone can learn from my journey, from my pain, and it can help them. We all know Crohn's doesn't just affect the body, but it alters the mind as well. Sometimes all we need is someone else who gets it. You know, REALLY GETS IT!

I hope that as I start back writing more often, God will give me the words that you may need to hear.

As for today, remember you are special and loved. Crohnies United!

Flare Up & 6th Stem Cell Birthday

I have been having a bad flare with diarrhea like 15 times a day. It has been going on a few months but Sunday I saw blood so I knew I needed to make an appointment.

I'm being tested for c diff. Ugh, it's been 6 years since I have had c diff and I so hope this isn't it. It isn't the type of thing you look forward to.

My blood work shows elevated inflammation markers and low hemoglobin.

On that note, today is my re-birthday! 6 years ago today was day 0 and I received my sister's stem cells and started my healing journey! I have had my ups and downs but I'm not dying anymore so yay! Lol

I'll keep you posted on my lab results!

May 2018

I have been having a Crohn's flare lately and am going to try some Rowasa. I'm in so much pain and bloated.

I'm anemic. I don't really know why but I am. I can't take iron supplements because I just can't digest them. I don't know what to do. I eat as much as I can. I take gummy multivitamins but it's not enough. This is probably why I'm sooo exhausted. Not to mention I'm trying to quit caffeine and smoking. Lord, help me.

My arthritis is so so but restless legs is killing me and keeping me up. I see my rheumatologist in a few weeks so i guess I'll be bringing it up to him then. The stelara injections seem to help a good bit of the pain but I still get searing pain up my back and in my hands so that's something we still need to work on.

I already take antidepressants and anxiety meds but sometimes I go through rough patches where I feel so down for no reason at all. It's really to be expected with all I've been through. I'm always terrified of going somewhere and being sick or in constant pain. It's very PTSD-like. It's a panicky dread of leaving the house. If any of you feel this related to your IBD, please know you aren't alone. And I promise, you'll get through it!

UPDATE 2018

Here is my year so far:

I've been under stress so I've had a bit of a flare. I'm on Rowasa as needed for that.

My arthritis is bad. My rheumatologist thinks he may need to double my stelara dosage.  So we shall see.

I went to donate blood today and couldn't because my hemoglobin is 9.6. Guess i get to start some iron for that. But i have no idea why it is so low! Ugh!

About a month ago, i fell off a chair and scraped up my entire side, took a chunk out of it and hit my head pretty bad. The wound got infected because of my suppressed immune system. It's all healing now! It's going to leave a huge scar. And i had some brain trauma so I have to go back to my neurologist.

Updates to come!

Inflammation All Over

I had bloodwork done at my rheumatologist the other day and my counts are definitely showing inflammation and I am not surprised.

My joints have been killing me. My stomach is in pain. My eyes are throbbing. I have to go to the eye doctor asap!

Will update when i get answers!

Christmas Update

I have been feeling so so lately. I have had some pain during my cold even though i wasn't taking any meds. But im feeling better now.

My arthritis is KILLING me. I can barely move my elbows and wrists...some days, my entire arm.

But other than that, i am good to go!

Not again

My heart has been broken and now im experiencing severe anxiety, stress, and depression.

As we all know, that also comes with a crohns flare up.

Unlike other people who get a nervous stomach when they're upset, i have to worry about more longterm effects.

Needless to say, i hate this disease

Uneventful is What I Worked For

I haven't been posting as much because my life has become rather uneventful. As I was preparing to go to bed, it hit me. I worked hard for this lifestyle. Heck, I worked hard for life.

My life may be boring and mediocre now but I wouldn't have it any other way!

For over 13 years, my life has been Hell. I was raped twice. I withstood verbal, sexual and physical abuse from a boyfriend for 5 years. I survived his attempted murder. I was diagnosed with Crohn's and fought hard to get better, when really I was fighting a losing battle. I was dying when I went through a stem cell transplant over 600 miles from home. Almost died during that as well. I have suffered anxiety, panic disorder, PTSD,  and suicide attempts.

It's been a long, difficult journey but look at me now. I'm overall pretty healthy, I'm the happiest I have ever been, and I am stronger in my faith more than ever before.

Because of the difficulties, I can now celebrate all my wins, regardless of size. I celebrate being able to go to the beach without rushing to find a bathroom.  I celebrate walking around in the park with no pain. I celebrate not having to worry if I'm going to survive my next beating.  I even celebrate getting to eat grapes without winding up in a hospital bed.

Life may be ordinary and uneventful, but, man, it's amazing!!

ER Visit: Nothing New

I'm at the ER for the first time since December 2016. I've been having increasing pain in my right side. Originally, I went to urgent care because I figured it was a flare up and i didnt feel like the ER wait. But it was too late in the day for them to do imaging so the doctor there urged me to go to the ER...even called ahead and sent notes.

5 hours later, I was finally given pain meds. He gave me Nubain, which I have never had before. Have any of you ever heard of it?? Now that he says he's suspecting a flare up, I'm just waiting for discharge. You all know how pain management is for us...one dose isnt going to do any good but asking for more makes us look bad. Smh. I hate going to the ER for this very reason. I would rather sit at home and suffer than be made to feel bad because I asked for something for the pain. I mean really...look at my medical history! You can clearly see I'm not an addict, I'm actually sick!

Sorry! Rant over!! Lol

Being prescribed more steroids. Even though i dont think theyll help the crohns, I have some respiratory issues going on too so I think they'll help there.

Will update you all soon!

Just Another Crohnie Day

I finished the Rowasa a month ago. i don't feel any different but my inflammation (C reactive protein went from a 6.8 to a 2.9) has gone down. i still have diarrhea and it's making me really sore!

I have spinal arthritis and the pain has been unbearable for the last year. so bad i had to quit the gym, i couldnt stand to cook, i couldnt even bend over to tie my shoes. About a month ago i was referred to a pain specialist and he injected nerve blockers in to my spine. my arthritis doctor is giving me steroid shots in my hips for bursitis (might be why my crp went down).  i feel soooooo good now! i even rejoined the gym! he hasn't gotten the stelara approved (hasn't been trying either) but he gave me samples last week so i could start it. im hoping that gives him the push to work on insurance approval!

i took a Pound class...dancing with drumsticks..this week and omg...it was a WORKOUT! I made the mistake of doing the same day as my steroid shots so i was HURTING! but it was a blast and awesome cardio so im going back for sure!

I've been trying to eat healthier. It's bot easy when healthy foods make you sick...thanks a lot crohn's! but im doing my best!

thats all for now! updates coming soon!

Rowasa

I haven't started the Rowasa yet. I will today. Hoping itll help with the inflammation and ulcer! But im nervous because Rowasa is also known as Mesalmine...the active ingredient in 5-Asas...which im allergic to. The doctor said my body should react to it differently as an enema than orally.  Crossing my fingers!

Colonoscopy 2017

I welcomed the new year with a colonoscopy! I have some inflammation and an ulcer in my rectum. My doctor is putting me on Rowasa enemas so lets pray it helps!

All Backed Up

I ended up back at the ER the other day. I hadn't used the bathroom in 4 days, as most crohnies know, this is rare. Last time this happened, i had a bowel obstruction. So i went in, waited for hours, only to find out i was really backed up but no obstruction. 2 days later i finally went. My stomach was hard as a rock and i was in so much pain. But now im back to going like 5 times a day. Gotta love crohns and it's unpredictability...

No Rest For The Weary

I cannot sleep. I take ambien and my doctor just started me on mini press for ptsd nightmares. But no sleep. None. Nada. Nothing.

I have slept a matter of a few hours over the last 3 days and I'm taking sleeping medication.  It shouldn't be like this! Last night at 5am I broke down and went to the store and bought 2 bottles of nyquil to use over the next week or so. I also bought some sleep aid similar to zquil.

I ended up taking half a bottle of nyquil and 4 doses of sleep aid before i got to sleep. That lasted 2 hrs. Not even a full 2 hours; it was a broken up and down 2 hours. Ahh!!! I feel like im going crazy!

Insomia, you're a bitch. JS.

Back Pain ER Trip

So i started having these severe, sharp pains in my back around my kidney and in my abdomen just below my ribs. It was hurting so bad, i couldn't sleep.

As much as i didnt want to, at 3:30am i caved and came to the er. I prayed on my way it wouldnt be a long wait or else i was going home and suffering through the pain. But God answered my prayer and there was no one in the waiting room.

They gave me fluids, pain meds and nausea meds to help..and they definitely did help. The doctor ordered blood work, urine tests and a ct scan of my kidneys.

All the tests came back great. Even though i suggested it may be my arthritis, the doctor feels its more likely a crohn's flare.

He gave me pain meds to go and is starting me in prednisone...yay, moon face will be back...😑😑😑

Praying my rheumatologist can get me on meds for my back and hoping my GI will figure out my flare (I have an MRI on December 10 and a cold in January).

I should be discharged in like 15min. Im ready to go home and sleep now!!

When You Live With Pain

I have been diagnosed with spondyloarthritis. And i cannot sleep! Even though im on ambien for my insomnia, the pain is relentless and i get no more than a few hours of broken sleep a night. I'm starting to get beyond frustrated with the fact my meds havent been preauthorized yet and my dr won't call me back.

When i saw him the 1st time, he asked my pain level. I told him a 10 because it was. I could barely move, walk, sit. I cant even bend over. He said no a 10 means you wouldnt be sitting here talking to me right now.

Hold on. Let me tell you something! For over a decade, i have been poked and prodded, been through chemo, a stem cell transplant, every test imaginable, felt like i was giving birth to my intestines 15-25 times a day, was malnourished, had multiple picc lines, almost died twice, had surgery, have given my self injections for years, broken multiple bones, had my bones drilled in to 3 times and God knows what else. I am not a stranger to pain. Just because you can't read it on my face, doesn't mean it doesn't exist. It just means I've been through Hell already so I know how to walk through fire.

Please don't underestimate my pain, based on my facial expressions.  You haven't live through what I have.

Cars and Couches

I have a Saturn car and it has a couple recalls so I took it to be fixed today. They told me 2 hours. And even told me to come back 30min after that to be sure they were done. So I came back...3 hrs later. Guess what....i sat there for 2.5 more hours!!! I was soooo irritated! Especially since I was supposed to get a new tire on my car and pick up a new recliner today.

Well i made it time for the recliner but the tire will have to wait. I hate it because the tire is so bare it's showing wires. Needless to say, I wasn't a happy girl today.

However, im relaxing in my wonderful new, oversized fluffy recliner with my kitties and it's just the stress reliever I needed!

My Back

Omg my back is killing me. I keep trying to work out but it's making my back so much worse. It's hard because I want to lose weight so badly and taking any break affects my self esteem. But i can't make my arthritis worse either. I have to call my doctor...again...about my medicine. Im going to talk to scheduling and make them leave a message because i left a voicemail on the nurse and doctor line almost 2 weeks ago and no call back yet. Like im not in excruciating pain smh.

Spondyloarthritis

So i have been having some serious back pain on top of my normal joint pain so I went to see my rheumatologist. He diagnosed me with spondyloarthritis. That is basically spinal arthritis. Im going to be giving myself shots twice a week of Acthar. I'm waiting for insurance approval now....ugh! I'll keep you posted!