Working With IBD: I Am Reliable, but My Health Is Not

Come take a look at an article I wrote about how coworkers and employers feel about my IBD.

Working with IBD 

.

Another New Normal

I have had another article published on inflammatoryboweldisease.net about a new normal after having permanent ostomy surgery. 

Come read it here:

Another New Normal

Visit inflammatoryboweldisease.net for more articles regarding IBD

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.

.

Men, Social Media and Inflammatory Bowel Disease: A Study

Back in 2019 I received an email from a PhD student (Lucy Prodgers) from the University of Leeds in the United Kingdom inviting me to take part in a study called "Men, Social Media and Inflammatory Bowel Disease". Normally I don't participate in things like this because some of these are just scams, etc. but in this case the PhD student is also a Crohn's patient and, to be honest, I was intrigued by the concept.

The study, with me and two other men, was in two parts, the analysis of my publicly available social media and blog posts specifically related to IBD followed by an interview with her to learn more about my experiences with IBD, blogging and social media use.

I did not have to do anything for the first part, just needed to give her permission to go through, and use, my social media and blog posts pertaining to IBD. The second part, the interview, was not as stressful as I was anticipating. This was almost 3 years after my initial contact with Lucy but the interview was not stressful and in fact was like I was speaking to a friend. Very fluid and comfortable. So much so, I contacted her supervisor complimenting Lucy. I found her "take" on my postings, including pictures, very intriguing and fascinating as I had never realized how others perceived my posts. I actually never thought about it before and was interesting to me.

Now, 5 years after the initial contact, her study, “How Do Men Who Post Publicly on Social Media Author Themselves and Their Experiences of Crohn’s Disease? A Dialogical Analysis of Three Cases”, is available online.

You can read the study here.

.

My Surgical Journey

I have had another article published on inflammatoryboweldisease.net about my surgical journey with Crohn's. 

Come read it here:

My Surgical Journey

Visit inflammatoryboweldisease.net for more articles regarding IBD

First Gastroenterology Appointment??

I have had another article published on inflammatoryboweldisease.net about what to expect at your first gastroenterology appointment. 

Come read it here:

What to expect at your first gastroenterology appointment

Visit inflammatoryboweldisease.net for more articles regarding IBD

.

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

.

IBD and the Summertime Heat

I have had another article published on inflammatoryboweldisease.net about IBD and the summertime heat. 

Come read it here:

IBD and the Summertime Heat

Visit inflammatoryboweldisease.net for more articles regarding IBD

Crohn's and Body Image

I have had another article published on inflammatoryboweldisease.net about Crohn's disease and body image. 

Come read it here:

Crohn's and Body Image

Visit inflammatoryboweldisease.net for more articles regarding IBD

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. 

.

My Advice On Flares

I have had another article published on inflammatoryboweldisease.net with my advice on flares after 35 years of Crohn's disease. 

Come read it here:

My Advice On Flares

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

Crohn's Disease and Mental Health

I have had another article published on inflammatoryboweldisease.net about Crohn's disease and mental health. 

Come read it here:

Crohn's Disease and Mental Health

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. 

Experiencing a Bowel Obstruction With Crohn's

I have had another article published on inflammatoryboweldisease.net about experiencing a bowel obstruction.  

Who knew carrots could have been the death of me.

Come read it here:

Experiencing a Bowel Obstruction With Crohn's

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

.

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.

.

Perianal Disease: A Literal Pain in the Butt

I have had another article published on inflammatoryboweldisease.net about my Crohn's related perianal disease.

Come read it here:

Perianal Disease: A Literal Pain in the Butt

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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.

.

Over 3 Decades of Crohn's Pain

I have had another article published on inflammatoryboweldisease.net about IBD and secondary pain.

Come read it here:

Over 3 Decades of Chronic Crohn's Pain...and Finally Pain-Free

Visit inflammatoryboweldisease.net for more articles regarding IBD.

One year ago.....

 As we watch Hocus Pocus (as we do each year) and the kids carving pumpkins in the kitchen, I think back to just 1 year ago where on Halloween day my doctor called to tell me to get to the ER as soon as possible... I was in acute renal failure.

To take you all back, I had temporary loop ileostomy surgery in September and was recovering at home while waiting for permanent ileostomy and proctectomy surgery (aka Barbie/Ken butt).  I needed to wait as I had multiple fistulas with my perianal disease and the temporary ostomy diverted stool away from the rectum in hopes to calm it down.  During my recovery at home, and unknown to me, I was losing too much liquid through my ostomy.  Was it watery? Yes.  Did I know any better? No.  I called my surgeon several times and was told it was part of the recovery.  But when I started to have dizzy spells, nausea, vomiting and passed out, I called my doctor requesting blood work.  The next day he called, it came back showing a GFR of 4 (low) and creatinine of 1049 (high) and to get to the hospital asap and he will call ahead for them to expect me.  I was in acute renal failure because of my ostomy.  I went by ambulance in case I passed out along the way, but I didn't.

I was put on drugs and saline as soon as I entered the ER and was waiting for a call from my surgeon at a different hospital.  I was in this ER for Halloween waiting and the next day I was transferred via ambulance to another hospital to treat my kidneys and await my other surgeries.

Fast forward 1 year.  The ostomy and proctectomy surgeries went well (6 hours).  I spent 27 days in hospital including my first time in the HICU (High Intensity Care Unit) because of my kidneys and blood transfusions.  It has taken 11 months for my GFR and creatinine to come back to "normal".  Still low, but way out of danger and looks like no kidney damage.  I now have a new doctor to add to my list, a nephrologist.  Side note... all my doctors (family, surgeon, specialist, nephrologist, and urologist) are all women and I thank them all.

It was 1 year ago when I got scared again for my health.  The thought of renal failure on top of everything else I've been through with Crohn's scared the hell out of me.  I was so close to either needing dialysis or a kidney transplant.  I am glad I requested blood work.

.

You May Be An Ostomate If....

 If you say "Ahhhhhhhh...." when taking off your ostomy belt when you get home from work

...you may be an ostomate.