Living With Short Bowel Syndrome AND Crohn's

I wrote 2 articles about living with Crohn's and short bowel syndrome.

You can read them here:

What It’s Really Like Living With Short Bowel Syndrome

Short Bowel Syndrome After Bowel Resection

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Keep Hydrated with Grosche

With it still summer, Crohn's and IBD warriors need to stay hydrated all the time, especially in the hotter months and even more so if you have an ostomy like me.

Do you want to "buy Canadian" in the current political climate?

Grosche is a Canadian company dedicated to safe drinking water, and when you buy one of their products, you're funding 50+ days of safe drinking water for someone else through their Safe Water Project.

Click this link to get yours today Grosche

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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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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

Crohn's Flare-Friendly Foods

I have had another article published on inflammatoryboweldisease.net about Crohn's flare-friendly foods. 

Come read it here:

Flare Friendly Foods

Visit inflammatoryboweldisease.net for more articles regarding IBD

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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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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. 

"Healthy" Eating with IBD

I have had another article published on inflammatoryboweldisease.net about "healthy" eating with  Crohn's. 

Come read it here:

I'd Love to Eat "Healthier," but My Crohn's Has Other Ideas

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. 

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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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Slow and Steady......

 There's that saying, "slow and steady wins the race", which may be true, but it is so frustrating.

So, for me, it's more than frustrating. I had my first surgery mid September for temporary ostomy which failed and caused further problems with my kidneys from the watery output. My GFR was down to 5 (normal LOW is 60) and was going into kidney failure. That ended me back into hospital for almost a month for my kidneys, making my ostomy permanent and a proctectomy (removing rectum and anus).

The slow part of my recovery after all of "this", is the proctectomy. It's taking way too long for my liking simply because of its location. Don't get me wrong, it's healing, just slow. On top of it all, I need to monitor my kidneys still and make sure I take in a lot of water every day. I get bloodwork every week to make sure, but they are still not up to 60. I drink a minimum of 4 liters of water everyday, but if I have watery output through my stoma (who I have nicknamed "Squirt"), I have to drink more to compensate.

It's coming along, slow and steady.

I am taking this "new year, new you" thing seriously this year. 

I definitely am new.

A Different Kind of Christmas

 2020 has made Christmas different this year, for me and for everyone. 

Personally, 2020 will be remembered for my health. Not that it was bad, but a lot happened as far as trying to "fix" me. My colonoscopy results caused my GI to contact my surgeon to take a look. I needed to have another one months later and she was concerned enough to schedule surgery and finally give me the ostomy I was trying to avoid for my 32 years of Crohns. I was given a temporary ileostomy in September as well as peri anal abscess's removed in preparation for a permanent ostomy with proctectomy. That surgery was done in November after complications from the first surgery. I was in hospital for the month of November and am slowly recovering at home.

Christmas this year was different, but in a good way. For the first time in 32 years, I was able to actually enjoy Christmas dinner. I had a proper meal this year, I tried everything. I didn't have to pick through it. And you know what? I had no pain or discomfort. None.  I have not had that feeling since I was 19 years old, Christmas of 1987. I'm 52 now. There were even years I just plain missed Christmas all together.

So with all the bad things happening in 2020, I will remember it for what I COULD do and not what I couldn't. My surgeon, Dr. Elena Vikis, a colorectal surgeon, was fantastic and a miracle worker. It took 6 hours, but she was able to separate what was left of my small bowel and lengthen it, giving me more to attach to the ostomy. Millimeter by millimeter, she separated it from the mass of bowel and scar tissue. I could eat my food again with no pain. I'm not afraid to eat anymore. Having an ostomy, named "Squirt", gave me my life back and yes, I think to myself, "why didn't I do this sooner?" I cant thank my surgeon and her team enough. It's still a long road to fully recover (the Barbie butt is taking longer than I expected), but I'm on the right road.

Squirt gave me my life back.

Colonoscopy Prep....?

 Everyone has a different approach when it come to the days leading up to a colonoscopy. 

Eat this, but not that. Drink this, but not that. Take this, but not that. Depending on your particular situation. "Normal" people who have "normal" bowels, I actually feel sorry for. They aren't use to restricting foods on a daily basis and I'm sure they feel they are "suffering" with the restrictions.

I laugh.

For IBD'ers, it's a piece of cake...so to speak. For me, I've tried the oral prep AND the enema prep but neither really worked, not sure why. I'm pretty sure it's because my small intestine is attached to my rectum, I barely have any large bowel left. Both types of prep cause me great discomfort. 

Now, I need this colonoscopy leading up to removing my rectum, anus and add an ileostomy and luckily my surgeon is doing the scope so she can look for what she needs to do from the inside. So, this is what I normally do...

Four days before the test I switch to a liquid diet. No food at all. Breakfast is black coffee or tea and jello. Lunch AND dinner is juice, water, black coffee or tea and chicken broth. That's it. In between I'll have some Gatorade. 

Now, you'd think I'd be hungry, but I'm not. With the amount of liquid intake, I "feel" full. I may not actually be full, but as long as I just have the feeling, that's what I need. Plus, I'm use to it. There have been too many times in my crohn's life that I have stopped eating. By the time my test rolls around 4 days later, there's nothing left inside me to interfere with the camera. 

This is what I DO. It may not work for others. The normal prep will probably work for everyone else, but I wanted to say, this is what I do, for me, because the normal prep doesn't work and causes great discomfort. Like we always say, what works for one may not work for another.

Crohn's Humor

After months or research and years of experience, I have FINALLY figured out what I can eat and drink without any them causing flares, pain or bloating.....

water and ice cubes

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COVID-19

COVID-19 has been around now since December 31, 2019 (first reported to WHO) and now has turned into a pandemic, I am shocked at just how stupid people are. No one can honestly say, "I didn't know", unless you just walked out of a cave with no contact with the outside world.

People are STILL coughing and sneezing without covering there mouths or nose.... REALLY?!?!

As someone with a low immune system, I feel like grabbing them and ask them, "are you really THAT f'ing stupid?!!!" 

If you are sick, STAY HOME!! Don't go out, don't go to work, stay away from people. And to those I see coughing and sneezing into your hands and DON'T wash or sanitize your hands, I just want to smack you up side the head!

Alot of people are doing what they are suppose to do, but there are far too many NOT.

Last week, we were in Orlando, Florida experiencing the wonders of Disneyworld. Our hotel, the Coronado Springs Resort had hand sanitizing stations throughout the resort, which was great.

Even Disneyworld  had sanitizing stations throughout the park as well as their security check point and staff members throughout the park had them attached to their belts. I have never seen so many people sanitizing their hands after getting off rides, it was great!!  Even our Disney bus ride to and from the airport made announcements regarding washing your hands and sanitizing after touching surfaces.

BUT, then there are those that were in the parks coughing and sneezing out in the open, not giving a care in the world. Now... this does not mean they have the virus, BUT it's just common courtesy to COUGH OR SNEEZE INTO THE BEND OF YOU ELBOW !!  I watched people while in line to rides coughing into their hands, and then touch the railings. Kids rolling around on the floor and then eat something and then touch railings, etc. I just.... don't.... get it.  What is wrong with people?

While we were there, Disney and Universal Studios closed on the Sunday (15th). We were to be at Universal for the Sunday and Monday, but cut our trip short and missed Universal all together. We were worried about getting home. We live in Canada, but flew out of Seattle and had to drive back from Seattle and cross the border.  With the constant changing rules and regulations we just wanted to get home at this point. Luckily we were flying Alaska Airlines and my brother in law is a pilot for them so we were able to use some passes to fly standby to get home early. No problems at the border either. We, especially me, were happy to be home. I could now breathe a little easier. I didn't want to be stuck in another country with an auto immune disease, with the threat of a pandemic AND my travel insurance would have been void because of it.  

I have never been so happy to see the Canadian flag. 

We are now in self quarantine at home for 14 days. None of us are showing any signs, but better safe than sorry.

Then there is the other end of the spectrum. People hoarding food and basic necessities. Why do you need 9 packages of 36 rolls of toilet paper??? Do you realize that's 324 rolls??  And water. Why do you need to stock up on water??!!  They are not going to shut off the water. I just don't get it. People are panicking, for no reason at all!!  Stores should be putting limits on items so everyone can buy food and necessities. I blame the stores for some of the panic buying.

Practice social distancing and WASH YOUR HANDS !!!!  The spread needs to stop somewhere, why not start the stop with you.

(rant over)

Keeping a Journal

If I could go back to 1988 and visit my young self, I would stress to me to keep a journal of my symptoms and keep writing in it no matter what. No matter how long... I wish I still did. 
I did in the beginning, but stopped about a year or so later when I had emergency surgery and bowel resections. I didnt think I "needed" it anymore, but I wish I had kept it going.

The one thing I tell the newly diagnosed is to definitely keep a journal.

Typically, I would start in the morning and list what I ate, what time, was there any pain and if so, how intense and for how long. Also when I had bowel movements, consistency (watery, semi formed, etc), was there pain, blood, color, etc.  It's a great way to track results of what you ate as far as bowel movements.  Also to track food reactions and the combination of foods. 
I personally havent had a regular bowel movement in 32 years! 😳

There are some great journals out there and I like this one, designed by a Crohn's sufferers' family member:

https://www.amazon.com/dp/B084DH8852

Whether you use a journal like this one, or design your own, keeping a journal is highly recommended.  Not only for you, but for your doctors.
The more information you have can only help with your Crohn's or Colitis journey.

Crohn's Disease in the Workplace

I am happy to have helped with this article from Antidote along with Matt Strutt from Give Crohn's a Slap From Me and Natalie Hayden from Light's, Camera, Crohn's

https://www.antidote.me/crohns-disease-in-the-workplace

Thanks to Nancy Ryerson from Antidote for the article and the ease of communication.

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