Thursday, December 27, 2018

Yuletide Scope

My Christmas Eve EGD showed some moderate gastritis - irritation and redness in my stomach.  No ulcer though he did take some biopsies.  I haven't heard anything about the biopsies so I am under the assumption everything was normal there.  I was given a prescription of Bentyl and told to try and keep my weight steady and not lose anymore. It's not like I was trying to do that to begin with.  Maybe if I try to lose I won't, seems to be the way it always works.  Anyway, that's the scoop.  I go back to follow up after the first of the year.  Meanwhile, I'm still having pain after I eat and a lot of the time when I don't eat.  New year, new me?  Not really.

Happy New Year!!!

Sunday, December 23, 2018

Yuletide Hospital Visit

The other night I found myself in the Emergency Department at the local hospital. The pain in my stomach had become increasingly worse over a couple days and a little too uncomfortable for me to be able to ignore. I didn't want to go to the ED because I knew they probably wouldn't be able to do anything for me but I went anyway hoping they could at least alleviate the pain a little bit and maybe tell me why I was hurting so much.  I'm still sitting here shaking my head in amazement at my stupidity for even trying to get someone to listen to me and help.  I am truly a glutton for punishment, I guess. Needless to say, I'll be on death's door before I go back to the ED again for stomach pain.

I arrived at approximately 4:10pm and after waiting for about ten minutes I was taken behind the desk and my vitals were checked and a few basic questions were rattled off at me so fast I'm not sure how they were able to jot down my answers before the next question was being asked.  I wondered if they were even really listening to me. This hospital visit didn't seem to be starting off too well, but I tried to think positive. Funny side note, they asked me how much I weighed and when I told them they thought they had the wrong person pulled up on the computer because of the weight that was in their system.  "Have you lost a ton of weight?" they asked.  "Yes, yes I have." I said.  What I didn't say was I'm half the person I once was, literally.  They didn't care either way.

After triage I only had to wait another ten minutes and they walked me back to a room. The ED at this hospital was really nice; clean, quiet and roomy and seemingly empty of many actual emergencies.  The physician's assistant immediately came in and assessed me.  She didn't ask many questions, just what brought me in and how long I had been experiencing the problems.  She pushed on my stomach and it hurt so bad I'm pretty sure I let out a vulgarity.  She said I would need a CT scan (because - every. fricking. time.) and bloodwork.  Okay, I'll play your game.  She also said they would be bringing in something for pain. Finally!

Enter the nurse with the meds for pain - the Toradol, the Pepcid and the GI Cocktail.  Really?  You're giving me an anti-inflammatory, an antacid and a numbing medicine?  Really? I didn't think that was going to cut it.  I wouldn't have gone to the ED if it was that mild of a situation. But okay.  An hour later I was still in as much pain as I was when I walked through the door. Bullocks.  I was taken to have a CT scan and then when I came back I got the news that my labs came back and my potassium was mildly low.  They brought in this orange flavored carbonated drink for me to help boost my potassium level.  Because carbonated anything was definitely going to help the pain I was already having, but I drank it.  It was disgusting.  I don't drink carbonated anything anymore because I can't tolerate the gas bubbles.  It didn't take long before the bubbles in this potassium drink started causing me discomfort, only lower in my abdomen on top of the pain I was already in.  I was miserable.

After the gross drink, I was still in pain so they decided to give me a Norco pill.  They wanted me to eat something so I didn't take it on an empty stomach.  Sure, because eating makes the pain worse, but okay.  I choked down a saltine cracker and took the pill.  It did nothing.  After another half hour they came in with a shot of Fentanyl because going from one extreme to the other somehow seemed appropriate.  Who was making these decisions?? The shot of Fentanyl was supposed to be a short acting relief until the Norco kicked in and after the Norco kicked in the Fentanyl was supposed to be out of my system.  Just that fast.  Except neither one worked.  Another hour later they decided that I needed Reglan and fifteen minutes after the Reglan they gave me Benadryl to help the Reglan work better.  All it did was make me tired.  I questioned if they had ever encountered someone with a jacked up stomach and intestines ever before.  What happened to the 4 mg of morphine I always got when I go to the hospital to alleviate the pain and knock me out enough to send me home to sleep it off and feel better the next day? Oh right, opioid crisis, I forgot. (My eyes hurt from rolling them so much.)

Anyway, after none of that worked they danced around having me spend the night and then not spend the night and then the doctor came back in with the physician's assistant and said since my CT scan came back normal and my labs were basically okay there was no reason to keep me.  I said I was in more pain than I was when I originally came in and the doctor started to go on this tangent about my lower left sided pain and diverticulitis and I just stopped listening.  My pain was in the upper right side and I didn't say anything about having diverticulitis.  No one did.  He had no idea what or who he was talking about.  I just shook my head and said, "What are you talking about?  I have Crohn's disease and my pain is in the upper right side."  "Oh. Well, whatever, we can't keep you.  But, we can try one more thing." He said, then left.  The nurse came in with another pill, Levsin.  Because the Pepcid, Reglan, Benadryl, Fentanyl and Norco didn't help anything it was only natural to think the Levsin would do the trick.  I was so disgusted at this point I just wanted to leave so I could go home and die in my own bed.  After the Levsin obviously didn't do anything, the wait was on for my discharge papers and, for them not wanting to do anything more than what they tried to relieve my pain, they took their sweet time getting me those discharge papers.  It was so beyond frustrating.  I finally got to leave a little over 7 hours after I got there and I was in just as much pain, if not more, than I was when I got there.  No relief at all.  They could do nothing but tell me to follow up with my GI.  Technically, I guess they tried.  But they didn't really help and only proved to me, once again, that hospitals and doctors are not able to satisfactorily deal with any kind of chronically ill patient.

Soap Box Rant...

I understand that emergency departments are there for emergencies.  I understand that emergencies mean acute, severe issues that are urgent and can't wait - including heart attacks, actively bleeding or dying, missing limbs, etc.  But what I think the doctors don't understand is that what it takes to get a chronically ill patient to go to the ED in the first place is something more emergent than our normal daily pain and problems. It's severe, it's acute for us, it's an emergency and can't wait until we can just follow up with our doctor.  If it could have waited, we wouldn't be there.  We know our bodies way better than any doctor ever could.  Just listen to us.  Help us.  

I was able to get an appointment with the nurse practitioner at the GI office the next morning and they immediately scheduled me for an EGD bright and early on Monday morning - Christmas Eve. This seems to be a yearly thing for me to have some kind of nonsense going on in my gut and need a scope right before Christmas on one end or the other.  Ugh!  My life.

Choose your favorite holiday and celebrate hard with family and friends!  Peace to all! Be well! I'll be back with the EGD results soon.

Tuesday, December 18, 2018

Fibromyalgia and Eye Problems - Who Knew?

Typically I don't write a lot about having fibromyalgia. I have it, I hurt all the time, and there isn't much I can do about it.  I've tried various medications to help with the pain but nothing really works and I don't want to get hooked on opioid pain meds (not that my doctor ever gives them to me) or muscle relaxers so I just live with it. I think the medical marijuana will help with this issue, but I am so used to being in pain that if I do get relief I won't really know what to do.  Pain is just a normal part of my life because of fibromyalgia. 

What is fibromyalgia anyway?  Mayo Clinic says: "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. Women are more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression."  My nurse practitioner explained it by saying I feel pain longer and more intensely than someone without FM.  I over feel.  I guess that goes with my overthinking.  

Fibromyalgia affects the nervous and muscular systems, so consequently the ocular nerves and muscles are obviously affected. Blurred or impaired vision, difficulty driving at night, dry eyes, eye pain, light sensitivity, shift to focus issues, and potential blindness in extreme cases are part of the complications that FM sufferers could expect. Because nervous system deterioration can occur in FM, it only makes sense that it would effect vision as well as so many other areas in the body. 

One of the biggest problems I am having, aside from pain, is poor night vision.  I just cannot drive at night anymore, even though I had that fancy cataract surgery years ago and my special eyes aren't so special anymore.  I'm not sure if it's more that I cannot really see because my vision is changing, the glare at night from other lights is too much, or if it's something else that really causes the issue, but once it starts getting dark, I'm done for.  It's terrible in the winter months when the time changes because that means I'm home by 5pm and never to venture outside again until daybreak unless I have a driver.  Honestly, I never even knew that this could be because of my FM until recently.

What's to be done?  Nothing really.  Managing symptoms as best you can which usually means medications.  Medications don't always work and can sometimes bring about side effects that only add to the already existing problems. And medications don't exist for night blindness.  Easy and careful exercise can help with pain and stiffness, but if you have severe fatigue and you are hurting it is more than difficult to get motivated enough to actually try it.  I like to do yoga and it does help a lot, but it is physically hard for me to get up and actually go do so I can't benefit from it as often as I would like and probably need.  Really, we can only do what we can do and manage the best we can no matter what that looks like.  Everyone is different and everyone has a different comfort level in what they can do at any given time.  That's the nature of the unpredictable chronic and invisible illness called Fibromyalgia. It's more than pain, more than brain fog, but still not enough for doctors to fully understand and be able to treat effectively. 

Thursday, December 13, 2018

Medical Marijuana Card Approval Appointment

I met with the doctor at the Ohio Medical Marijuana Card office last week.  It was an interesting and informative appointment.  Though I basically knew what to expect since my cousin had already gone for her appointment and wrote about it in her blog HERE, I was still a little surprised by the whole thing.  Here's what happened:

My appointment was at noon and when I arrived I had to show my ID and check in.  I asked the gentleman behind the desk if they had all my medical records and he assured me they did.  I had actually called a few days before my appointment to make sure and I was told then that they had everything they needed so I didn't need to bring anything.  Once I was checked in, I sat down and I waited.  And waited.  And then waited a little longer.  There were three people ahead of me.  I've waited for hours to see other doctors before so this really wasn't a big deal for me, other than being annoying because I did actually schedule an appointment.  But whatever. I'd rather them take extra time with everyone that rush people through.

The waiting room was clean, and basically quiet. There was a nice bathroom available, which always helps every situation.  About an hour and a half after my scheduled appointment time, I was called in by the doctor.

We went into a small exam room where I sat on a couch beside his desk.  He looked over some of my records and asked me why I was there.  As I started to explain my various medical issues, he looked at me and told me he had no records of any of it.  He showed me the records he did have, in his actual paper file, and it was basically just the information from my last primary health care check up visit - nothing for the Crohn's, Fibromyalgia, chronic pain, diarrhea or any of the rest.  I informed him that I had called and asked if they had my records and I was told they did.  He said that the records he had was all there was and until I could get him more, he wouldn't be able to sign for me to get my card.  I was totally okay with that, but that's was surprised me. He actually wanted to see proof.  He wanted to know that I wasn't there just making up some story to get marijuana.  I was aggravated as hell that they didn't have the records when I had specifically called to make sure, but I was glad he wasn't going to approve me without them.

We talked some more and he made several suggestions about what he thought could and couldn't help me.  He said I had such a variety of issues it was hard to narrow down on just one or two key problems, but we managed.  He gave me a bunch of information and told me that if I could get him more of my medical records he would be happy to look them over and make a decision about approving my card.  Again, I was just so impressed he wasn't just signing cards and handing them out to anyone who walked in the door complaining of something and paying the fee.  It wasn't like that at all.  It was professional and legitimate.

I walked out and was greeted by the gentleman at the desk and I asked him how I could go about getting my medical records since what they had wasn't enough. He assured me that they did have all of my records and that there was so much that had come over from my GI he didn't print everything but it was all in the computer.  He immediately called the doctor to come out and asked him to sit down and look through my records on the computer right then.  The doctor did.  He made it about four pages in before he looked at me and looked back at the records and looked at me again.  You could tell he was thinking, 'Wow, she wasn't lying about all those things wrong with her.'  He scanned through more pages and said again, I had a wide variety of issues but with the information he saw he could definitely approve me for my card and he signed my form. Once the dispensaries open I will legally be able to purchase medical marijuana in the State of Ohio.

There are lots of follow up appointments and you have to renew the card and be reevaluated every year, but I'm actually glad about that too.  I'm glad they don't just approve you and leave you to it.  Follow up is important and communication is vital.  If something isn't working it's important that you talk to the doctor and they find a better way.  I don't always feel like I have that with Dr. GI so we'll see if it's any better with this doctor and this type of treatment.

All in all, I'm really pleased with how this process works.  I'm quite eager to see how helpful the people at the dispensaries will be. I'm also eager to begin a new form of treatment that will hopefully improve my quality of life.  Stay tuned for updates along the way.

Monday, December 10, 2018

TrialSpark Is Making A Difference In IBD Research And Here's Why

Way back in 2010, I went to Indiana University/Purdue University Hospital (IUPUI) for some testing on my pancreas and common bile duct. There are several posts about it if you want to go back and read more, but the one thing you won't find is that they asked me if I wanted to be part of a clinical trial. I said absolutely - until I realized what it was exactly. Long story short, it involved suppositories and that was NOT about to happen, so I didn't do it. Regardless, I have always been interested in clinical trials and wondered why I have never been asked to be a part of one by any of the doctors I have seen - the doctors who cannot figure out exactly what it is that is wrong with me or seem to find a decent medication to help me. Certainly it isn't because of my aversion for suppositories. 

But what do clinical trials do anyway? What's the point of them? Here's the 411. (Do people even say, "here's the 411" anymore?) I don't know. But here it is:

Clinical research trials help the medical community prevent, diagnose, and treat diseases. During clinical trials, new treatments (and more!) are tested with voluntary participants. Participants may decide to join a clinical trial because they are looking for new treatments for their own conditions, or they may want to help push medical research forward. Clinical trials test interventions such as new medications, medical devices, procedures, or changes to behavior (like seeing how an adjusted diet impacts your IBD).

The clinical trial they wanted me to be a part of when I was in IUPUI was to see if taking Ibuprofen suppositories before, during, and after an ERCP prevented a pancreatitis attack (which can happen due to the manipulation of the pancreas during the procedure). Unfortunately, I actually did have an acute pancreatitis attack after my procedure - and it was terrible. I often wondered if those suppositories would have prevented the attack. I looked it up and this was a clinical study in several areas, not just IUPUI. I never took the time to fully read the final research results though.

Here's the thing with clinical trials - most of them take place in major hospitals where there are already sick people. A patient normally cannot just decide to become part of a clinical trial. Your doctor or hospital generally helps you get involved, and typically they are only in major medical institutions in highly prominent areas. TrialSpark wants to change that by streamlining the way clinical trials work and how the research is compiled, kept, and utilized. The great thing about participating is that you not only help contribute to medical knowledge, but you also receive close medical care, advice, and support from a research team who understands your condition. You may also be able to access new treatment options before they are publicly available. There is something to be said for being part of a solution.

So who is TrialSpark? They are a startup in NYC working to make clinical research faster, smarter, and more accessible - so millions more can get the treatments they need. Plus, they have several trials specifically for Crohn’s and ulcerative colitis patients whose past treatments or medications haven’t worked for them. Very cool!

I alone have tried so many different treatments for my symptoms - from medications, to diets, to alternative therapies - remember the acupuncture? Nothing has worked for me. The frustration knowing you fail treatment is immeasurable. I've seen it in others with IBD also. I've watched them go through it from behind my computer as I monitor their progress through their own personal blogs, Instagram, and Facebook accounts. So many people with IBD are suffering and I hate it for them. I hate IBD and what it does to them, their bodies, their bank accounts, and their lives. Being a part of a clinical trial could potentially stop that. Crohn's and colitis could eventually be a thing of the past due to trials like these. What would that be like? Can you imagine?

TrialSpark currently has trials going on in New York City and Washington D.C. and you can checkout their Trial Finder HERE More trials in more areas will be added as additional patients show interest.

I know that I personally feel like the current healthcare system is failing me. I don't feel taken care of. I don't feel helped. I don't feel hopeful. As patients, TrialSpark is giving us a way to feel all of those things. Check it out, think about it, talk about it, and spread the word.

Wednesday, November 28, 2018

Let's Talk About Medical Marijuana

Let's just start here and get this out of the way...

Now that we have had a good laugh, allow me to explain that this is NOT what medical marijuana is all about.  It's not about getting stoned and losing touch with reality.  It's about relief from symptoms in a natural way that is non addictive and safe. It offers a chance to avoid, wean down, or get off of pharmaceutical medications altogether.  Medicines like opioids - you know the thing that is a huge epidemic crisis in this country.  Medical marijuana is safe and no one has ever needed Narcan because of using marijuana.   

There are many different forms of medical marijuana and many different ways to use it.  In Ohio, the only legal way to use marijuana is edibles, vaping, tinctures, or creams and oils.  You cannot legally just get a bunch of weed, roll a blunt and smoke it up.  Which I think is good.  And the majority of what chronic pain patients are looking for is relief, not a high, so they use products that have a higher CBD to THC ratio. (For more technical information on the differences between CBD and THC please go HERE and read this.) And then there is this handy little chart:

Recently, my cousin Jenn, who also has a great blog about chronic illness, wrote about her experience obtaining her medical marijuana card.  I encourage you to go to her site HERE for the whole post.  Meanwhile, here are some highlights that I think are great to be aware of. And a HUGE thank you to Jenn for writing this post.  It's well done, informative and vitally important to talk about. 

"The waiting room was very clean and quiet. With the exception of a pod cast playing which didn’t bother me one bit. It was not filled with drug crazed lunatics like some government officials think it would be. Just people like me, in pain and so badly want it to stop." "The doc called my name so my hubby and I proceeded to the exam room. Exam room was comfortable and clean. Typical looking exam room. I sat on the couch next to the doctor as we began to talk about my health conditions and fibro. He reviewed my records and test results. The doc and I did talk about different forms available and what he thought would be best for my symptoms."  "All in all I did have a very good experience. I do recommend going there to obtain a recommedation for medical marijuana. Honestly, I was afraid that with medical marijuana recommendation places popping up (just like some pain clinics) that it could be real sketchy. But this place wasn’t like that at all. I was impressed of the cleanliness, ease to make an appointment and the thorough exam." What I am hearing here, is this process is treated like a regular doctor's visit - even much different and better than a pain clinic visit. It's above board. It's not sketchy. It's not a dirty, back alley with some sleazy guy slinging drugs out of a shed or a car. It's professional and it's going to help a lot of people who legitimately need it.
Please take a moment to view this video to learn some of the basics about medical cannabis. This was put together by the Gastrointestinal Society, the Canadian Society of Intestinal Research. Medical Cannabis Video.  It explains, in layman's terms, how cannabis affects the body and helps various chronic illnesses, and also discusses the downfalls and risks of use - which still cannot compare to the risks and side effects of major pharmaceutical drugs.

Upon researching - A LOT - about cannabis and Crohn's disease, I found this article and the following blurb caught my attention: "Though people who use it often report improvement in pain or easing of diarrhea, there's no objective evidence that marijuana actually reduces the gut inflammation that's at the core of the disease."  I have two things to say about this: 1)  If it improves my pain and eases my diarrhea when nothing else does, why wouldn't I use marijuana?  After fighting for over 23 years, why the hell not?? Anyone who has read this blog for any length of time has had a front row seat to my struggle and failed medication after medication and not being able to get any kind of successful treatment.  2)  There is no "objective evidence" for why I have such pain and diarrhea anyway, so I definitely don't need "objective evidence" to prove to me that marijuana works.  Having chronic pain, no appetite, diarrhea over 12 times a day, major weight loss, and all the rest of my symptoms never even skew a standard blood test, but we all know it isn't normal to live this way and that it isn't healthy. Marijuana eases those symptoms - every single one of them. If medical evidence can't tell me what's wrong, I don't need medical evidence to prove to me that something will fix it, especially when I know it does. 

There you have it folks, my advocacy of medical marijuana.  I will be going for my own appointment soon and am looking forward to what they have to say to me about my specific situation.  I'm also looking forward to finally achieving some relief of my symptoms. I'll keep you posted on the progress.  And please actually click these links, read the articles, watch the video, and most importantly, visit Jenn's blog and read her full post.  

Be well!

Thursday, November 8, 2018

Quick pic

Sometimes I just wear cool socks and take pictures of my feet in my own bathroom!