Fatigue

Fatigue. 

Talk with anyone that suffers from Crohn's and it'll be THE most common symptom amongst us. But what, if anything, can we do about it?
The most common, is anemia, so boosting your red blood cells and iron are key.

Here's what you can do as far as food goes:

Iron. Food rich in iron can help your body rebuild what it has lost. Lentils and legumes are a great way to get the iron you need and they are healthy for you in many other ways, too. Meat and specifically organ meats are the high in iron.
Copper. This vital mineral can be found in many foods, including shellfish, poultry, liver, whole grains, beans, cherries, chocolate and nuts.
Folic Acid. Long known as a great help for pregnant and nursing mothers, foods that contain folic acid include lentils, dark green leafy vegetables, black-eyed peas and cereals fortified with folic acid.
Vitamin A. This very important vitamin can be found in a multitude of fruits, including grapefruit, mango, watermelon, plums, cantaloupe and apricots.
Vitamin B12. Meat, eggs and fortified cereals are a great way to get plenty of B12 in your diet.
Vitamin B6.  This vitamin is found in a wide variety of foods, including meats, whole grains and bran, nuts and seeds, fish, vegetables and legumes.

Vitamin D. Egg yolks, fatty fish and simple sunshine help restore levels.

There are also supplements, if you can tolerate them.
Iron, Vitamin B12, Vitamin B6, Vitamin D & Vitamin E supplements can also help in boosting your red blood cells.

When B12 fall too low, B12 injections may be necessary.

Now, having said all that, dehydration can also cause fatigue and it has been my experience after all this time, dehydration never even crossed my mind when I was feeling worn out, tired and/or fatigued.

Fatigue is just one symptom of dehydration. Headaches, dark urine, dizziness, confusion, dry mouth and thirst are some of the other signs of dehydration. Now I know the signs and know when I am getting dehydrated along with the feeling of being tired.

I try to maintain at least 2L of water each day but sometimes I need some help. I take Buoy drops (which you add to any liquid), Nuun tablets (that dissolve in water) and in more severe cases HydraLyte (a powder to mix with water).

Believe it or not, and even though you don't want to do it most days, but exercise can also reduce your fatigue levels.

Also, the simple act of sleeping helps.  But the effects of the disease itself, like pain, anxiety and depression are also factors in contributing to feeling tired.

Many times though, its the very medication that helps us, that tires us.

Be sure that every time you go to your specialist, or regular doctor, mention it.  Don't think that it can't be treated.....maybe they have suggestions that will help.  Not every thing is going to work for everyone but can't hurt to try.

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Are Clinical Trials Necessary?? *Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

Skin Conditions

I have had another article published on inflammatoryboweldisease.net about skin conditions with Crohn's. 

Come read it here:

Skin Conditions

Visit inflammatoryboweldisease.net for more articles regarding IBD

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Prednisone Dependence?

I have had another article published on inflammatoryboweldisease.net about prednisone use. 

Come read it here:

Dependent on Prednisone

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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No Really, I AM Sick!

I have had another article published on inflammatoryboweldisease.net about having to prove that I really am sick and suffering. 

Come read it here:

No Really, I AM Sick!

Visit inflammatoryboweldisease.net for more articles regarding IBD

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What I Do For Crohn's Pain Relief

I have had another article published on inflammatoryboweldisease.net about IBD and what I do to help alleviate IBD pain. 

Come read it here:

What I Do For Crohn's Pain Relief

Visit inflammatoryboweldisease.net for more articles regarding IBD

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My IBD Glossary For The Newly Diagnosed

I have had another article published on inflammatoryboweldisease.net with my glossary for the newly diagnosed IBD warriors. 

Come read it here:

My IBD Glossary For The Newly Diagnosed

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

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My Take On Biologics

I have had another article published on inflammatoryboweldisease.net about taking a biologic with Crohn's. 

Come read it here:

My Take On Biologics

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

Crohn's Joint Pain

I have had another article published on inflammatoryboweldisease.net about living with aches and pains with Crohn's. 

Come read it here:

Stiff, Achy, and Sore: Crohn's Joint Pain

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

Are Clinical Trials Necessary? *Updated Repost*

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patient's life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without clinical trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself. Imagine diseases or conditions like, heart disease, cancer, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was more than 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be by improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's Crohn's and colitis foundations. Many will have links on their websites to pre-screening. You might get declined, but it just means you don't meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

IBD Global Network

I had my first Zoom meeting with the IBD Global Patient and HCP Network today.  The first of many meetings over the next year with other patient advocates and health care professionals to discuss the relevance and need for clinical trials when it comes to IBD. More importantly, how to improve the clinical trial process from how to get patients to sign up to helping the healthcare professionals doing the trials with better resources, research, etc.

I have always been an advocate for the clinical trial process because without them, we may not have the amazing IBD drugs we have now.

I had the chance to be part of the Remicade trials in Canada more than 20 years ago but turned it down. I only wish I had agreed to take part back then. Remicade was amazing for me when I finally decided to go on it in 2012 until my body developed antibodies to it just 8 years later. I still think about those who were part of the clinical trials that ended up helping me with my Crohn's and I thank them for it.

There are many places to look for IBD clinical trials, here are a few:

Crohns and Colitis Canada

CISCRP

Crohns and Colitis Foundation (USA)

Crohns and Colitis UK

Clinical Trials (worldwide)

Sure, you might be in the placebo group but I think that IF there is a chance for a better life with a new medication, it's worth a try. I have tried to get into several clinical trials over the years but my main problem with not being accepted is that I have had bowel resections, too many for that matter, and do not qualify.

...but you might.

 

The Perspective of a Crohn's "Veteran"

I have had another article published on inflammatoryboweldisease.net about being a Crohn's veteran with 34 years "experience".

Come read it here:

The Perspective of a Crohn's "Veteran"

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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My 34-Year Crohn's Journey Continues

I have had another article published on inflammatoryboweldisease.net about how my IBD journey continues.

Come read it here:

My 34-Year Crohn's Journey Continues

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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COVID 19 3rd Dose Booster

Crohn's and Colitis Canada has recommended that people who have IBD on medications that suppress the immune system be included with other immunocompromised people getting the 3rd booster shot in the fight against COVID 19.  See here:

COVID 19 BOOSTER

As does the Crohns Colitis Foundation:

COVID 19 BOOSTER

And Crohns and Colitis UK:

COVID 19 BOOSTER

Please contact your local governments to push adding immunosuppressed IBD patients to their 3rd dose lists.  With the Delta variant becoming more and more prevalent, and with the millions of people NOT vaccinated (for whatever reason) the risk of catching COVID is still there.

You Might Be a Crohnie If...

 If the doctor asks to see your medical file, and you ask "which volume?"

... you might be a Crohnie

Hadlima (adalimumab)

Today was my first injection of Hadlima, the biosimilar to Humira.

The injection pen was easy but it hurt more than the Humira. Only lasted a few seconds, but it definitely let me know it was there that's for sure.  It's only been an hour and so far so good.  Not that I'm expecting anything to go wrong.

I'm still not happy with the government forced-switching from a biologic to a biosimilar, but I have no choice and have to make the best of it.

Let's see where this goes shall we.

Hadlima Biosimilar

 I live in Canada and while my country is great for universal health care, the money from the Federal government is dispursed amongst the provinces and territories for their own needs.  

MY provincial government, the NDP of British Columbia, in their "wisdom" has decided to forcibly switch my medication for the sole reason of money.  No consideration to me as the patient.  A non-medical switch from my biosimilar, Humira (adalimumab), to a biosimilar, Hadlima. Crohns and Colitis Canada, doctors and practitioners have been advocating on behalf of patients since 2019, falling on deaf ears at the government level.  They did this a couple years back when I was on Remicade. Back in April, I wrote a letter to our provincial government, the Health Minister and the Premier, as well as news agencies, and the ONLY response I received was a note from a general entity within the government, with a link to biosimilars.  I don't need more information on biosimilars and biologics, I'm pretty sure I have done way more research on the meds than the government ever did.  I asked for proof that switching patients who are long-term users of biologics, to biosimilars has no side effects.  I also asked where were all these "savings" being directed to.  No surprise I received zero response.

I am not saying that biosimilars don't work, I see plenty of evidence they do.  That's not in question.  What I am asking those who are in charge, to prove to me that forcibly switching patients for nonmedical reasons, is better than leaving them on medications that are working for them.  The decision to switch should be between the patient and the doctor and not the government. 

I have had Crohns disease for 33 years and the past 10 of those have been on biologics.  The ONLY drug that has worked for me and believe me, I've tried many.  I understand using biosimilars, but it should be for patients who have not tried biologics and keep those who are on them, ON THEM.  When, and if, the biologic stops working for them, THEN switch to the biosimilar.  Not say, "too bad, we're switching you" end of story.

I guess we'll find out what happens to me after June 2 when I am supposed to start Hadlima.  Hopefully, it works and keeps my Crohn's at bay. 

No one ever said there were ethics in government. They are proving it now.

****UPDATE****  My Hadlima starts July and not June 2

"But, You Don't Look Sick"

I know I've talked about this before.  How people who either don't have a chronic illness, like Crohn's, know someone with a chronic illness or are a little ignorant, just don't understand. This covers a wide variety of people from friends, co-workers, employers, and even doctors.

When I was in the beginning stages of the disease, I went to several doctors trying to figure out what was going on. Pain, diarrhea, pain, blood, pain, weight loss, oh yes, and pain. I agree could be a variety of issues, but it was focused on my gut. Having said that, there was at least one doctor who even after looking at test results, questioned that it might be all in my head.

Friends, or who I thought were friends at the time, some co-workers and even some employers use to say, "but you were fine yesterday" or "you don't LOOK sick".  Not knowing or understanding, but assuming or insinuating that I was faking being sick. The fact that I was actually faking being well never dawned on them. 

So to all those doubters for the past 33 years that I have been diagnosed and battling this "fake" disease, here is a picture of the 5 full binders of my health records. 

Yes, that is 3, 3-inch, and 2, 2-inch binders. 

Come by and read all about my fake illness, including surgical notes and some pictures. 

I'll put the coffee on.

 

Humira: Day 136

Humira has been an interesting adventure to say the least.
Oh, don't get me wrong, it's still doing the job, but I've had some weird "reactions" these past few injections and other IBD'ers I've talked with say it's strange as well.
So, let's back up...

I started Humira January 2 of this year without any fan fare, all good, pretty boring. Everything was pretty easy and no problems. Since then, I've had what I would call "reactions" after injecting.
Now, I don't know IF it's related to the Humira, but it's too much of a coincidence.
I do my injections every two weeks and I alternate between my left and right side of my abdomen.
Back in April, on back to back injections, I had Rigor attacks. A sudden, and I mean sudden, feeling of cold and chills, uncontrollable shaking and fever. The difference for me though, is I'll keep up with the shaking until I throw up and it slowly eases. It takes several throwing up episodes and hours later, it's gone.
What I'm left with though, is massive joint pain in my knees, hips, neck and jaw from the shaking.
It takes several days to fully recover.
My last two injections I have put in my thigh and no reaction, so I'm wondering if injecting into my abdomen is causing a reaction with my Crohn's. The throwing up makes me believe its causing a "blockage" type scenario.
I usually get Rigor attacks one a year or more before these last episodes. Now I've had two in as many months...weird to say the least. The only common factor is the Humira.
I have an appointment with my gastro soon, I'll talk with her more about it and hopefully I'm not the only one. Wouldn't be the first time.

But hey... it's always nice to be first at something....right?!

Humira : Day 57

Humira is different than the Remicade simply because I really have nothing to report!
I'm guessing it's working, but wont know for sure until another colonoscopy is done.
I have another MRI next week because one I had done last month was "unclear" regarding my pelvic region, probably to do with my ongoing peri anal fissure/fistula/abscess.
Hopefully this next one will be more clear for them. If it shows it abscessing worse inside, then I will need to see a surgeon to re access. If it gets that far, then I would need to get a colonoscopy regardless. Fingers crossed.
All I now is, since being on Humira, my peri anal disease has not been bad at all. It's definitely better, not 100%, but better.
Well, if I have to get another colonoscopy, my family sure enjoys it. I never remember anything from the conscious sedation, but my family sure gets a good laugh. And as everyone knows with this disease, sometimes you just have to laugh!