Crohn's Disease Forum » Your Story » Crohn's, Ken Doll, multiple surgeries, looking for helpful advice

04-27-2017, 04:42 PM   #1
Join Date: Apr 2017
Location: York, Ontario
Crohn's, Ken Doll, multiple surgeries, looking for helpful advice

I am the father of two beautiful 2 year-old boys. I am an elementary school teacher and I have been suffering with Crohn's for most of my life.
When I was 3 I stopped eating, became very skinny and was misdiagnosed with Epilepsy because I suffered a 6-hour status epilepticus episode.

Eventhough all my EEGs were always normal, every year, I was still medicated for Epilepsy (Dilantin) from the age of 3 to 15. During all of my childhood, I was seriously underweight and suffered from staph infections approximately twice a year, for which I received...Penicilllin. On average 2 or 3 times per year.

At 15, I was “cured” of the epilepsy that I never had. Then at 19, I suffered 2 very serious seizures within a week of each other and I was put on a gabapentin type drug called Epival. Could it be that the Epival affected the progression of my disease?
I became obese on the Epival and I felt stoned every day, so against the advice of my neurologist, I weaned myself off the Epival.
I was 26. I was fine for about a year and a half, and then I started to have a lot of abdominal pain and I was bleeding in the toilet.
My family doctor at the time was a Dr Mark J. Huryn, in downtown Toronto, who told me (without inspecting my anus) that I probably had hemoroids because I was fat and that since I was fat and that I should diet and exercise. (and also I was fat)
I asked about my abdominal pain. He said that it wasn’t that bad because I didn’t scream out when he osculted me. What is screaming gonna do to help my pain?

I found another doctor, the wonderful Dr. Yves Talbot at Mount Sinai, Family medicine. He first checked my bum and saw that it was clear of all hemmorhoids (duh!) and then ... colonoscopy : blood,ulcers everywhere, disease, really really bad. "But you don’t look that sick..." "...and your blood work and.."
That was in 2002. I was 29. I was hospitalized soon after. Then, released after failed 4 hours-long steroid drip treatments (what fun!)

I went to the emerg a few months later with pain, because my gastro at the time, Dr. Maria Cino at Toronto Western, had rescheduled my last appointment, because she had an “emergency”. I sat for 2 hours in her waiting room wearing a diaper full of blood. I told the secretary this. Perhaps I should have taken off the diaper and showed the secretary. Because she obviously didn’t believe me. But I believed that she believed me.

Now, I know and trust me, the more your disease progresses, the more they never believe you, no matter what they may tell you.
Because I did not LOOK sick enough and my blood work and x-rays were always NORMAL. But the diapers were FULL.

I called a few times tried to see my gastro. Desperate, I went into the emerg at Toronto Western.
I cook. So I can hear how a cup of liquid sounds landing in another liquid.
In the emerg, I answered honestly : “about 3 or 4 cups of blood per day.”
The doctor scoffed “But no, your blood work is normal.”
And the hand on the shoulder, and the condescending tone :
“I know that, especially for a man, when you see red in the toilet you get scared, but it can’t be that much or your bloodwork would show it and you wouldn’t be standing there.” And he checks the skin under my eyeball. “Not very pale.”
“Well, I always need to go,” say I, “give me a bed pan.”
I came back out a few seconds later, a tiny defiant little turd floating in about ¾ cups of fresh bright red blood. His face became so pale, paler then the sheets on my hospital bed. BUT : He still sent me home. Yup.
Because my x-rays, my get the idea.

A few weeks later I collapsed in a medical plaza and was brought by ambulance to the ICU. It was toxic megacolon. I almost died.
I spent my 30th birthday, along with a few other weeks, in the ICU at North York General.

I only saw my gastro two months post-op. I had a piece of rectum left, bleeding into a little plastic ball. And for balance, my loop ileostomy on the other side.
And then I was referred to Dr Zane Cohen at Mount Sinai to do the pelvic pounch. His crack team of pathologists had analyzed the slides of my intestins and they were sure WITHOUT A DOUBT that I had Ulcerative Colitis and not Crohn’s disease.

My surgeon at North York General disagreed, but like Indiana at the end of the Holy Grail, “I can almost reach it Dad !” Visions of the non-sick me, not super skinny, not super fat, not bleeding, healthy, wearing a bathing suit, no stoma, no ileostomy : The Dream. So I reached for it.

My rectum was removed, and a pelvic pouch was formed out of my terminal ileum. During the surgery though, there was a crisis, between ego and the eternal : I died, just a little. And saw a very sad and very disappointed God, but still, I came out transformed. From an agnostic to a believer.
And my surgeon, the great Zane Cohen, saw that he could not even attach my pouch because I was too diseased. He had no other choice but to connect my pouch to the waifer-thin anal tissue, because all my rectal tissue was so ridiculously diseased that he had to have it all removed.

But he DID have another choice : perhaps he had already formed the pouch, or maybe he hadn’t yet, but definitely the surgery was started, I was cut opened, and I definitely, without a doubt, had Crohn’s. Yup. At that moment, he had to know, seeing how diseased it was, that his pathologists were WRONG.
That is what EVERYTHING is diseased means: Crohn’s. Which means: no pelvic pouch. But you can’t stop in the middle ! Oh Dear, what would the people at the country club say? Pie on the face for the welfare of a patient ? I think not. So he chose to instead attach it.
And without the customary 6 months loop out (not sure what the logic was there).

Of course, It didn’t take. Ever.
Fistula after fistula, years of bleeding , pain, infections, huge holes made all over my bum. We looped it out twice after that. By then, I had upgraded to wearing pads to stop the bleeding from the infections and fistulas. By 2012, 6 holes will have been made in my bum, packing periods ranging from 2 to 4 months each.

Then in 2012, I had the ken doll finally and “was able to move on with my life.” But all my wounds opened up. My anal wound was 11 cm wide by 9 cm deep, when I opened my legs, my wife thought I was gonna split in half.

I spent 6 months with a vac unit stuck to my bum and super painful wound changes every second day. Another 3 months before the wound finally closed up, in March 2013.
But by May, I had a lot of abdominal pain.

And it may be hard to believe, but the doubtful behaviour began up again. I was referred to a social worker to talk about my distrust of doctors. (yes really)

I was referred to the Wasser Pain Clinic and participated in CBT and Mindfulness Meditation sessions to learn to cope with my “chronic pain”. I no longer had active Crohn’s all my pain was now “crohnic pain” caused from all my surgeries.

And everyone condescended again when I found blood in the bag : “it’s from all those uhm, bumps on your stoma.” “You mean these bleeding ulcers ? (at least 20 or so all over my stoma and inside) They bleed enough to give this much blood ?” (about ¼ cup) No.

My gastro now is Adam Weizman -- at Mount Sinai still (maybe I need to find another hospital, should I go back to North York ?) – and he thinks that while I have been through a lot (insert insincere compassionate statement) my pain is “multifactorial” and “complex” and that while I may “believe” that the pain that I feel is Crohn’s it is not. Your bloodwork and your x-rays...sound familiar ? And here we go again !

HEY DOCTORS? Do you know why disabled people and people suffering from long-term diseases do not like to go to the Emerg ? Because we are “professional patients” we know the ropes, so we don’t complain as much, so you place us in the hall and ignore us for hours, when you check on us, our stoma is on public display and in at least 3 cases for me, our bare bums and genitaliae, in the hallway. All our symptoms are welcomed with doubt and ridiculed and sent home with pain killers. And we wait a REAALLY long time (I mean the lady with the pink-eye and the dude with the twisted ankle go home first and “Do you know why?” Triage? No. Because their problem is simple, and yours, well. They punish you. And so you are left standing, still in tremedous pain, diaper or pad full of blood, on the frozen sidewalk at 3 in the morning, hailing a cab and telling yourself “Never again”.

And when Adaw Weizman’s secretary stonewalls me, she says what ? we have all heard it :
“If the pain is too bad, go to the emerg.” Okay thanks for that.

An MRI Enterography in Hamilton showed the presence of disease in the middle of the small bowel, but Adam Weizman’s team of radiologist did their own MRI Enterography and say that I am not sick.

But they finally put me on Humira starting on February 17, 2016 (As a “preventive measure” writes my Gastro in my file, because he insists that I do not have active disease.) Important to note that I received this drug 9 months after I first told him of the pain. 9 months!

But the pharmacist who meets with me calls Humira a “miracle drug” (yeah, like I haven’t heard that before!)
And at first, nothing. Then, I wake up one morning in mid-April and I feel great ! I really did. I still had all the “chronic” pain. But the fatigue, the heartburn, the trouble with appetite, the ridiculously intense abdominal pain. All gone.
I started swimming. I was running everywhere. We went to Cuba ! In July, I started to feel weak and sick with abdominal pain towards the end of the 2-week period and so I started taking the shots every week. And then I was doing great again ! (I should have known then, but I was biologic naïve)

I started work slowly in September, and things were looking good ! Then, in October I started feeling weak and sick again and I started to take Buscopan more and more again. By November, I was off work again. And that is where I am now. No one can explain the 6 months when I was doing great but apparently I do not have active disease.

We are waiting for a capsule endoscopy at St-Michaels on in mid June. I will be done with the ENTOCORT that I am taking by the end of this week and I then officially am not being treated at all for my Crohn’s (which is not active). I just came back from a 7 hour stay at the emerg, where Dr. Kopansky did not even deign to see me and my case was handled 100% by a 2nd year resident general practitioner. No GI consult was even called. I said that my pain was a 10 when they discharged me, they offered me an ATAVAN (for anxiety) because as the nurse said “sometimes when you have a lot of pain you can feel anxious.” Really? You think ? Diagnosis : Chronic Complex Pain Syndrome.

So those of you who are doing okay now, make sure that you have a plan if you ever start feeeling worse, because they will not believe you ! Even after I have lost my colon to Crohn’s and active disease has been seen in my small bowel, the gastro who saw that active disease, Adam Weizman continues to insist that I do not have active disease and because of that he does not “feel comfortable” prescribing another anti-Crohn’s medication to me. Okay, well my 2 year old boys, my wife and I do not “feel comfortable” with me barely able to move from the pain.

I have known the pain of toxic megacolon and of a hole the size of a volleyball in my bum. I have been cut 7 times from below my pubis to below my chest and when my boys bite me or step on my foot, my wife complains that I don’t cry out, but I don’t feel it as much. Crohn’s patients know pain. Very well. If pain is an aquaintance to most, it is a close family friend to us. But still doctors doubt. And for me, history is right now repeating itself. and so I am left in pain, and with no treatment for my Crohns’.

Thank you for reading. If anyone has helpful advice, I would welcome it.
Glad to be here.
04-27-2017, 08:27 PM   #2
Join Date: Apr 2017
Location: Indianapolis, Indiana

I read your thread. I know what you mean, or I KNEW. (Thankfully, I haven't had problems that involved the ER with the Crohn's in a few years.)

I know how taxing this disease can be on your physical and mental self. But, you have to fight back! You have to be the collector of information and use it to help yourself get better. Sometimes, people (especially Doctors) are not going to appreciate you for helping them help you with the disease, but hey, you have to do what you have to do for your own well-being. And along the way, you will have some people listen to your point of view, too. But if you don't, don't get discouraged, you can get your life back, with or without them!

(I have been on a journey that I am not quite ready to share right now, but let's just say I have been through the wringer, but now i'm in control. Today, I went for my second mammogram, a follow-up from my first last week, had to get some additional images and an ultrasound, during which I was told not to worry. And I blurted out instantly, "Oh, I'm not worried!" because I wasn't. The doctor eventually said I have benign cysts. Okay, I told the technician, I really wasn't scared, because I have enough. I have been through enough with this Crohn's, that nothing can scare me. She then told me about that her brother is a colorectal doctor and that I should look up an article on fecal transplants in The New Yorker at least a year ago. I did, and I have more research to do, but it does sound promising.)

One thing that I will share is this...Schedule a time to laugh EVERY SINGLE DAY! Laugh therapy is a miracle that God sent me to heal me at what has been my sickest time to date, and I have been told by one surgeon that i had one of the worst cases he'd seen in 30 years, denying me a take-down surgery for the ostomy as one of only 3, he claimed. (He wasn't the only doctor to tell me I was one of the worst they'd seen.) I scheduled my laughter every night for 30 minutes by watching a standup Christian (curse free) routine that I could just cut back on right before sleeping. I noticed a marked difference in the disease in a few weeks...
04-27-2017, 08:28 PM   #3
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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I am truly sorry for all you have been through. Maybe, you should seek out a second opinion.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-27-2017, 09:12 PM   #4
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hi Papantoine,

I am so sorry to hear of that tremendous struggle in your life. I think you need a different doctor. I'm sorry that I can't help but to lend an ear. You can talk to me and vent or anything you like. pm's are fine too.

I wish you well,

05-10-2017, 11:42 AM   #5
Join Date: Apr 2017
Location: York, Ontario
Thank you all for reading my very long introduction:
short question: can a doctor refuse to give me the next treatment against crohn's because he feels that while I do have crohn's it is not active ?

I appreciate all the help and support
05-10-2017, 12:03 PM   #6
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I wouldn't think so.

05-14-2017, 06:55 PM   #7
my little penguin
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Join Date: Apr 2012

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Why did you stop humira ?
It can be given up to every 5 days and methotrexate or imuran can be added to humira
Have you tried een ?
Formula only no solid food
Works as effective as steriods and can be effective for the small bowel
Your current upper scopes /pill cam and MRE are clean?
Have you sxplored other causes other than Crohns for your pain?

I know for ds we were so focus on Crohns and one cause was gastroparesis
So while related to Crohns
Crohns wasn't the cause
I am not saying you gave gastroparesis
Just using it as an example
Can you travel to Mayo Clinic or another big place to gets freshest of eyes ?
DS - -Crohn's -Stelara -mtx

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