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 

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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

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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.  

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

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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

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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

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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

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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

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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

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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"

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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

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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

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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

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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

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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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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.

"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.

 

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.