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!

Sooo Sick and Miserable

I still haven't gotten better in weeks. I've been super nauseous, throwing up bad and switching between constipation and watery diarrhea. I have had a couple "ok" days in between but not much.

I went to see my doctor  (my actual dr and not a work in) yesterday. He put me on antibiotics even though my labs came back fine (always baffles me how they can when i feel like THIS). Hopefully it'll rid my body of some of the bacteria and I'll start feeling better.

He also finally got me scheduled for the camera endoscopy. So today is prep (yay....) and tomorrow at 7:15am I am going in to swallow the camera. I will wear a device for 8 hours and then return it. It will take a couple weeks for them to read the images but hopefully they'll be able to find out what is going on!

I think it's funny because people keep saying things about feeling bad because I am so sick. I just keep telling them, it's life for me! I can't let it get me down or I would always be down! I have learned to get used to it and I am just thankful that i don't have to worry about losing my job or trting to make it through this. It also makes me a lot more thankful for the good days or even the ok days! I feel like i have a lot more appreciation for life than most and I'm good with that. Of course, i get frustrated with all the tests and when I'm laying in bed in agony, i cry and want it to end, but at the end of the day i know I'll be ok! :)

Stress and Sickness

I stayed sick for a week straight. It was definitely stress induced since it hit immediately after something stressful happened. I haven't been able to eat, I've been super nauseas and have had watery diarrhea really bad. I went to the doctor because i was definitely dehydrated but they just ran some blood work and i have to take stool studies back up to the lab on Monday.

Also I STILL haven't been scheduled for the pillcam! 3 weeks later and NOTHING. Ugh!!

Missing the Retreat

I've been having a major flare. Well it feels majorm im in constant pain, of course cant stay out of the bathroom and I have zero appetite. Im drinking a lot but it all messes with my stomach and feez dont dare I eat even a bite a day :(

My small group at church is going on their retreat this weekend to the lake. Crohn's told me I cant go.  It sucks. I was looking forward to it big time. But how can I go sleep in a cabin with 10 people when im using the bathroom every 10min, weak from not eating, and yeah cant you picture me up until 4 or 5am and theyre getting up a few hours later smh.  The logistics dont work out. So thanks for stopping me once again crohn's.  I honestly feel its better than going and being miserable. I'll stay home and make special plans with my bestie :) she always knows how to lift my spirits when im down or in a flare. She gets it. And THATS what I need!

Insomnia Overload

So I ran out of my ambien because ive needed more of it to sleep lately. So I havent had it in a week and a half and I havent slept at night since I ran out. My doctor put me on something new called Belsomra but ive doubled the dosage and NOTHING.  Im not falling asleep until 8am every day/night, whatever you want to call it.  And then im sleeping off and on for a few hours, horribly, and then im wide awake again. So im incredibly sleep deprived. I have to wait until Monday to reach my doctor again. I dont know how much longer I can handle this. To top it off, my appetite has been nonexistent,  my stomach is very upset, my head is killing me and im super stressed. I know if I got some rest, id be better. At least id be able to deal with the other issues. But for now, im just too exhausted.  I give up

Its 5:01am...ive been trying to go to sleep for 4 hours now. I've really given up at this point. There's no point stressing over it when I know it wont happen for a few more hours anyway. Ugh!!! Sucks so bad

Crohn's VS Me

I feel like this flare up is beating me and I refuse to let it win. I'm in a difficult position.  My fiance has court in the morning,  2 hrs away. Crohnies know how bad that is. For those of you who don't,  long drives with long distances between bathrooms are the most dreaded tasks. He supports me and my illness so much, even when it inconveniences him and I am always there for him. He wants me there so bad for support and I want to be there. But my Crohn's wants something else. I don't know what to do. I dont want the crohns to win. Its not fair. Im going to do my best to go with him. I cant let gim down, hes not sick, why should he have to suffer the consequences of MY disease??? I dont even care about myself and how im feeling. I only care about being there for him. So im sending a message to my crohns. ...BEHAVE! YOU WON'T WIN THIS ONE!!!

Please say a prayer tonight that it calms down enough for one day, just one day!!

Doctor Visit

Ive been cramping for days and cant stay out of the bathroom, when I actually make it in time that is. They've decided on definitely doing a colonoscopy or a partial one to check out my sigmoid where the crohns has always been and where im having the pain at. This is mainly to reduce the risks associated with the actual procedure.

As always, ill keep you posted!

And a special thank you to my fiance for putting up with me being in bed all week. I know he's bored and its not easy on him either but he's being super supportive!

Rough Night

I had a rough night. I was up sick all night and barely made it to the bathroom in time. The urgency is getting worse and now im noticing some intestinal bleeding.  I have a gi appointment Thursday.  I think a colonoscopy is a good option right now to get in and see what's going on before it gets worse.  Im not a slow progresser. My intestines love to go from 0 to 60 pretty fast.

Sometimes any answer is best

The doctor can't explain why I slept the way I did and cant remember those several days. He's sending me another neurologist. This is frustrating. People keep saying well no news is good news. Forget that!! To a sick person, no news means no answers means I have to stay sick because they can't fix it! This is no way to live. Don't get me wrong, this is waayyy better than pre transplant.  But daily diarrhea,  vomiting, extreme fatigue,  and constant pain is not fun. And it's not normal! But it looks like I have no choice but to make it normal ugh.

I read an article about the effects of Crohn's disease on the brain and how it causes migraines and memory loss after about 10 years after onset of the disease.  Which I where I am (I was diagnosed 7 years ago,  but I was sick for several years prior to actually going to a doctor). I will find the article and post it on a separate post! It's so interesting and I think all of us crohnies and our caregivers need to read it and give it to your GI! It may actually explain my problems and my doctors are oblivious!  I'm plnning on taking to my gi, neurologist,  and oncologist.  I will let you know their feedback! :)