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!

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!!

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!

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.

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!

Finally Home, Still Sick

I was discharged friday after 5 days in the hospital again. Got home and in still sick. I have no appetite.  Im throwing up everything I get down. Im in pain. I called my GI last night and he said I could wait until Monday and go in to the office or go to the er and let them do a ct scan. He recommended the er, but I dont want to be admitted again so I tried to sleep it off. Im so so right now. Hopefully ill be feeling better by tomorrow and won't need to go in at all. Ugh!! Not fun!!

Crohn's Disease Complications: Strictures and Fistulas

Complications of Crohn's disease 

People with Crohn's disease are at risk of developing a number of complications.  

The two most common problems associated with Crohn's disease are discussed in more detail below.

Intestinal stricture

The inflammation of the bowel (intestines) in Crohn's disease can cause scar tissue to form, leading to the affected areas becoming narrowed. This is known as stricture.

If this happens, there is a risk of digestive waste causing an obstruction. This means you will not be able to pass any stools or you will only be able to pass watery stools.

Other symptoms of bowel obstruction include:

abdominal pain and crampingbeing sick (vomiting)bloatingan uncomfortable feeling of fullness in your abdomen

Left untreated, there is a risk that the bowel could split (rupture). This creates a hole that the contents of the bowel can leak from. You should contact your GP as soon as possible if you suspect that your bowel is obstructed.

Intestinal stricture is usually treated with surgery to widen the affected section of intestine. In some cases this may be achieved using a procedure called balloon dilation, which is performed during colonoscopy.

During balloon dilation, a colonoscope is passed up your back passage (rectum) and a balloon is inserted through the colonoscope. This is then inflated to open up the affected area.

If this doesn't work or is unsuitable, a surgical procedure known as a stricturoplasty may be needed to widen the affected area. During this operation, the surgeon widens the narrowed part of the intestine by opening it, reshaping it and sewing it back together.

Fistulas

If your digestive system becomes scarred as a result of excessive inflammation, ulcers can develop.

Over time the ulcers develop into tunnels that run from one part of your digestive system to another or, in some cases, to the bladder, vagina, anus or skin. These passageways are known as fistulas.

Small fistulas do not usually cause symptoms. However, larger fistulas can become infected and cause symptoms such as:

a constant, throbbing paina high temperature (fever) of 38°C (100°F) or aboveblood or pus in your faeces (stools)leakage of stools or mucus into your underwear

If a fistula develops on your skin (usually on or near the anus) it may release a foul-smelling discharge.

Biological medication is usually used to treat fistulas. Surgery is usually required if these are not successful.

Other complications

People with Crohn's disease are also at an increased risk of other complications, such as:

osteoporosis – weakening of the bones caused by the intestines not absorbing nutrients and the use of steroid medication to treat Crohn's diseaseiron deficiency anaemia – a condition that can occur in people with Crohn's disease because of bleeding in the digestive tract; common symptoms include tiredness, shortness of breath and a pale complexionvitamin B12 or folate deficiency anaemia – a condition caused by a lack of vitamin B12 or folate being absorbed by the body; common symptoms include tiredness and lack of energypyoderma gangrenosum – a rare skin reaction that causes painful skin ulcers

Children with Crohn's disease may also experience problems with their growth and development because their bodies are not absorbing enough nutrients.

Colorectal cancer

Some people who have Crohn's disease have a slightly increased risk of developing colorectal cancer in later life.

You should be offered regular check-ups to look for colon cancer if your healthcare team feels you may be at an increased risk.

This will usually involve a colonoscopy and a biopsy.

Resource : www.nhs uk

Stricture

I came in to the ER tonight. I've been vomiting and in pain for 4 days and I finally caved. I guess it's good I came here and not my family doctor.  They did a ct scan to check my appendix but it was fine. Instead they found a stricture in my small intestine and im backed up, similar to an obstruction but its not an obstruction fortunately!  However, thats what's causing the pain and vomiting! I'm being admitted for observation and steroids so ill keep you posted! I'll also be adding some information about strictures when I can get a better signal! Hospital signal sucks!

Home Remedies Part I

Here are some remedies for all kinds of things! Hope they help and ill post more as I find them!

Me VS the World

A lot of times when you have a chronic disease,  others don't get it. That can be more frustrating than the disease itself sometimes!

Sometimes I feel like such a burden and inconvenience to other people but I have to remind myself that this is beyond my control and sometimes it has to be about me and my health and not what others think. I want so badly to please everyone else that I push myself too far. My biggest fear is not being sick or dying or pain, it's being an inconvenience to the people around me.

I posted some things i found on pinterest that really do explain this feeling. So whether you're sick and can relate,  or you aren't and can get a better understanding of how we feel, they're must reads..funny and honest! :)

Sickly Guilt

Ive been given steroids and pain killers and let me tell you, im EXHAUSTED! !

I just ate a big meal with Tim, my fiance, and now we are watching Robocop.  But honestly,  im dozing off and think I may need to call it a night. I just feel so guilty,  like I'm making him suffer because I'm sick, and that's just not fair. I wish I could be better, not for me, but for him.