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.

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Hospital Food

I just spent another few days in hospital after having another stoma revision. The surgery went well and I am 95% recovered.  The nurses and staff were great once again (except when I was to be discharged; took way too long) but I always seem to have an issue with the food. Not because of the taste or anything, but with my Crohn's, I have dietary restrictions. Trying to convey this seems to always be a problem which shouldn't be.

Now, I get that patients need to get the necessary vitamins and nutrients while in hospital but if the patient does not eat the food or drink because they can't, then I am thinking about all the wasted food each hospital must throw out because it cannot be re-used (prepackaged food or drink) for the germs.

I do not have a problem with the food itself, sometimes it is quite tasty (definitely an improvement since the 1980's) but I am going to use my last hospital admission as an example.

I let the nurse know what I could and could not eat (roughly) after the dinner arrived following my surgery. It consisted of rice, carrots, chicken, mandarin orange slices, coffee and Ensure. From all of that food, I ate a little bit of the chicken as I just had surgery on my intestine and experience has told me to not overdue it on the first meal. I drank a lot of water instead. When the nurse came in to check, I told her that I have Crohn's and I could not eat the carrots (they would have to be way softer than they were), nor the oranges (too much fiber in the skin which goes right through me), and especially the Ensure. There is too much "stuff" in Ensure which causes diarrhea for me. I told her that I also could not handle dairy products, so no milk, etc.  I mentioned that it would be great to have peanut butter as this is a protein my body can handle.

No surprise, breakfast came with cream of wheat, milk, coffee and Ensure again. Needless to say, I did not have breakfast but the nurse did bring me some cold toast later. I explained, again, what I could and couldn't eat. Lunch came and same issue and so on and so on. So I would pick through things I could eat but I never had a full meal while in hospital for three days. Each meal came with Ensure after telling who would listen that I could not drink it.

I am not sure whether the nurses never conveyed the message properly or no one was listening. The message must have gotten through though because the paper menu that comes stated "Crohn's restricted diet" yet still was given food I could not drink. Obviously they have a program in the kitchen and when they punch in "Crohn's" certain menu items pops out, but not taking in the individual patient's feedback. 

So, three meals a day for three days and 98% of everything I received needed to be thrown out.

Even in hospital I can't get away from lumping all us IBD patients into one category, not taking in the fact that we experience IBD differently. If I was staying in hospital for longer, I would have requested a dietitian to come see me. I have had this many times before and they are great at getting what I need for meals but as I was only going to be in for a few days I did not see the point this time.

I think hospitals need to make some changes to their nutrition program and maybe allow patient's to make changes because of dietary restrictions after that first meal, like maybe something on the paper menu that could be returned to staff almost like a suggestion box or on the pre-admission form. I realize they probably can't do this with the hundreds of patients but something needs to change and hospitals may want to have a patient advisory board for these types of things.

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Ostomy Awareness Day

It was 4 years ago this month that I had my second ostomy surgery. I had a temporary loop ileostomy in September to divert stool from my rectum so my perianal disease could heal. I was suppose to have this temporary one for a few months but I was losing too much liquid and my kidneys couldn't keep up. I was in "acute kidney failure" according to the ER doctor. I had a GFR of 4 and creatinine of over 1300 (a normal GFR is 60 and over and a normal creatinine 0.07-1.3 mg/dL) and was admitted to hospital in the hope to get my kidneys back to a point where we could finish the permanent ostomy/proctectomy surgery. Sooner than what my colorectal surgeon wanted but the perianal disease was healing nicely. It took two weeks in hospital for my kidneys to recover (thank goodness) to a point where my colorectal surgeon was comfortable enough to do the surgery.

It took 6 hours but that was because my surgeon painstakingly, millimeter by millimeter, separated my intestines from my abdominal wall that were attached from the dozens of previous abdominal surgeries. Too much scar tissue. I was in hospital for a month and 9 days for the temporary ostomy.

On this Ostomy Awareness Day and personally my 4 year "stomaversary", I can honestly say that I do not regret in any way getting the ostomy even though I had been avoiding it for almost a decade. I had been living in pain for 32 years (1988-2020) prior to the surgery and to be honest it is a strange feeling NOT feeling or expecting pain. There is also no more rushing to the toilet anymore. I have a new normal that took getting used to but totally doable and I have more freedom with the ostomy.

I would be remiss not thanking everyone who has been there for me over the many many years and their love and support, especially my wife and kids, but also the many nurses and health care providers who have a thankless job in my opinion and are not paid nearly enough.

Finally, my colorectal surgeon who has done an amazing job with the surgeries I have had with her. Not only is she an awesome surgeon, she is very personable and listens to my concerns without judgement which I am sure many of us have experienced the opposite. I cannot thank everyone enough.

My only regret..... I did not do the surgery sooner.  

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. 

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2023 Gutsy Walk !

Please help raise funds for Crohn's and Colitis Canada's programs and research.

Gutsy Walk this year is June 4, 2023

I am living proof that these programs and much-needed research work!  

You can help me here on my Gutsy Walk page.

Together as one, we walk to stop Crohn's and colitis

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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Deciding To Get Ostomy Surgery

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

Come read it here:

Deciding To Get Ostomy Surgery

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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Gutsy Walk June 5, 2022

Once again I will be participating in Crohn's and Colitis Canada's Gutsy Walk on June 5th, 2022 with the Fraser Valley West Chapter.

This year, I have been named the Fraser Valley West's Honorary Chair!  It truly is a great honor to represent the Fraser Valley West Chapter this year and hope to not only money for Crohn's and Colitis Canada research, but also more awareness of inflammatory bowel disease.  Hopefully also bring more awareness to the stigma of bowel disease and now as an ostomate.

If you would like to donate to my walk, please donate here:

My donation page

The cure for IBD is around the corner. We're so close.

Thank you for your donations.

~Vern

'Twas the Night Before a Crohnie Christmas

Every year for the past 16 years, I read "Twas the night before Christmas" to my kids on Christmas eve before they go to bed...

Here's the Crohn's disease version

‘Twas the night before a Crohnie Christmas, quiet as a mouse
Trying to get to the bathroom without disturbing the spouse.
The TP was hung by the toilet with care,
In hopes that I don’t run out whilst I sat there.

The children were nestled all snug in their beds,
I hope I’m not too loud lest I wake their sleepy heads.
And mamma in her ‘kerchief, and I in my cap,
But I had to get up, I needed to crap.

When out on the lawn there arose such a clatter,
I sprang from my throne to see what was the matter.
Away to the window, I flew like a flash,
Still pulling up my underwear to cover my ass.

I live on the west coast so there wasn’t any snow
Just dreary wet grass that I can see below.
When what to my very tired eyes should appear,
But a miniature sleigh, and eight tiny reindeer.

A decrepit old driver, not lively or quick,
I knew in a moment it must be St Nick.
He didn’t look well, he must be inflamed,
But he whistled, and shouted, and called his reindeer by name!

"Now Crohns! Now, Colitis! Now, Pain and Grouch!
On, Abscess! On, Fistula! On, Ostomy and J-Pouch!
To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!"

And then, in an instant, I heard on the roof,
The scratching and farting of that big, silly oaf.
As I drew in my head and was turning around,
Down the chimney, St Nicholas came with a bound.

He was dressed all in fur, from his head to his toe,
He looked very fatigued, he moved really slow.
A bundle of toys he had flung on my chair,
He looked in pain, it must be a flare.

His eyes, how they squinted! His face quite scary!
He let out a fart, not pleasant or airey!
His droll little mouth was drawn up like a bow,
I was getting prepared, he was gonna let another one go.

The bags under his eyes, I saw his fatigue
That comes from living with this dam Crohn's Disease.
He had a broad face, (must be the prednisone),
If he didn’t hurry, he would soon need the throne.

He was chubby and plump, a right smelly old elf,
And I laughed when I saw him, in spite of myself!
The moon face, mood swings and twitch of the head,
Soon gave me to know it was for sure the pred.

He spoke not a word, but went straight to the bathroom,
And filled my toilet with a splat! and a KABOOM!
And laying his fingers, covering his nose,
Giving a nod, up the chimney he rose!

He sprang to his sleigh, he now weighed so much less,
He thanked me and apologized for the big mess.
But when I heard him exclaim, I realized he knew my plight,
“I have Crohn’s disease too, it’s going to be one HELL of a night!!”

Merry Christmas everyone!!  Hopefully it's disease-free...at least for one day.

All the best for a happy and healthy 2022 !!!

-Vern

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.

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You May Be An Ostomate If...

 If you subconsciously check your bag while driving through the country because of the pungent air

...you might be an ostomate

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You May Be An Ostomate If...

If you are having a get-together with family and friends and all you can think to yourself is, 

"I'm totally pooping right now"

....you may be an ostomate.

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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. 

You May Be An Ostomate If...

 If airport security asks, "Can I look in your bag?" and you lift your shirt

...you may be an ostomate.

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10th Annual WEGO Health Awards

Once again I am humbled for being nominated in 5 categories in this year's WEGO Health Awards. Endorsements are on now until July 31 and if you would like to endorse me or this blog, please click one of the badges below to endorse. 

The WEGO Health Awards have proven to be one of the best ways to honor, recognize, and celebrate the work of patient advocates, influencers, and healthcare collaborators who are changing the patients’ lives and transforming healthcare.

Thank you in advance and good luck to all the nominees !!!

To Bag Or Not To Bag

That is the question.

It may come one day.  The decision to choose to have ostomy surgery.  Some might not have that decision as it may be an emergency.  When I had my first (of many) bowel resections starting in 1989, it was an emergency and my doctor and surgeon said to be prepared for the possibility of waking up with a pouch. In the end, it wasn't needed. Every resection I've had since there was always the chance of waking with the pouch attached.

Fast forward to around 10 years ago. My gastroenterologist strongly suggested I have ostomy surgery mainly because of my ongoing perianal disease. I had been doing "OK" with my Crohn's symptoms and frankly, I had gotten used to the perianal disease and how to "live" with it.  I had learned over the decades what to do and what not to do.  Sure it was a pain in the ass (literally), but the thought of yet another major surgery just wasn't what I wanted to do. I had just started Remicade and wanted to see how this new medication would work for me and fingers crossed, rid me of the abscesses, fistulas, and fissures.

8 years with the biologics Remicade and a year on Humira didn't seem to work for the perianal disease.  It worked wonders on my other Crohn's symptoms though. (Unfortunately, I am starting a biosimilar, Hadlima, tomorrow.)  A colonoscopy confirmed the fissures and stricturing about 6 inches inside. I made the decision to go through with the ostomy surgery along with the proctectomy with the hope to finally rid myself of the pain.  There is no guarantee of course because Crohn's is unpredictable, but after 33 years, maybe the pain will subside.

So, in September 2020 I had a temporary loop ostomy so the perianal disease can heal. It went well, but I was back in November 2020 with acute renal failure due to the amount of water I was losing. Two weeks later I had my permanent ostomy and proctectomy.  A month and a half in the hospital to maybe eliminate future hospital visits.

We are now 7 months post-op and I'm glad to have made the decision.  The only regret is I didn't make the decision sooner.  Oh sure, it's taking a long time to get used to having the pouch and I still am having some skin issues around it, and I am able to sit finally, but I wouldn't take it back. It's freeing in a way, not having to worry all the time about where a bathroom is.  There is no sudden rush anymore. The main problem right now is trying to keep hydrated in the current heatwave we are having. I am drinking about 5 liters a day, along with electrolyte drinks, and keeping out of the sun and heat. I still got dehydrated I think as I have shortness of breath, headaches, muscle cramps, fatigue, and nausea. Trial and error I guess.

So, to bag or not to bag? For me..... yes.