- Joined
- Mar 23, 2012
- Messages
- 5
I was stricken with sudden onslaught of Crohn’s disease last year. My age is 61. The disease caused me chronic diarrhea, 30% weight loss and relentless fatigue. Additionally, I suffered multiple infections including thrush throughout my esophagus, sepsis shock and a blood clot at a chest catheter site.
There is no known history of Crohn’s in my family. I was living a fit and active lifestyle here in the Rocky Mountains.
The only prior gastro distress in my lifetime was approx 10 yrs ago when I contracted Giardia (a diarrhea causing intestinal bug), twice in one summer, as I took up white water kayaking. Three years ago I had three minor surgeries, within a month and a half, to repair a lacerated finger and an inguinal hernia. Those procedures required abundant anesthesia and antibiotics that also provoked several weeks of persistent diarrhea. Both episodes were successfully quelled by taking Flagyl.
Throughout the Crohn’s attack I endured 85 days in two different hospitals, five different times, for tests, treatments, and intensive care.
Even with 2 colonoscopies, endoscope, pill cam, bone marrow biopsy, MRIs, blood cultures and myriad other intrusions, a Crohn’s diagnosis was frustratingly slow to eventually become confirmed. I atrophied from malnourishment, dehydration, infections, electrolytic upset and being bed ridden for too long. My normal weight of 150 lbs. tanked down to 91 lbs. The images or even thoughts of food became repugnant to me. Though I was starving, nothing would stay inside me long enough to get absorbed. Stools never showed blood nor did I experience severe pain. The gas cramps present during the diarrhea periods were very uncomfortable but generally and quickly relieved with expulsion of a gigantic fart.
The initial treatments included the regimen of massive doses of corticosteroids (Prednisone), 43 intravenous bags of Potassium, hundreds of caps of Pentasa, Omeprazole, anti-inflammatorys, antibiotics and Remmicade.
The mysterious development and aggressive advancement of this disease, coupled with the uncertainty of whether any of the treatments were actually healing anything, only deepened my feelings of despair and physical deterioration.
The “turn around”, however, did occur. We don’t know if any one treatment was profound enough to produce the rebound or if it was finally the combination of meds, treatments, nourishment, and time that put me on the pathway to remission.
Those significant elements of my treatment to acquire that first remission include:
14 hour infusions of TPN feeding through a chest catheter for 6 weeks;
Engaging a General Practitioner knowledgeable with Crohn’s and electrolyte/body chemistry balance;
Vitamin B12 injections;
Potassium supplement;
Nightly scoops of Cholestyramine;
Remmeron for depression and appetite stimulation;
Testosterone;
And of course the Ativan and Ambien needed to subdue the Prednisone / steroid buzz that creates anxiety and insomnia.
I thrived for 6 months as my appetite, weight and energy level returned to normal. Nevertheless, this late January, a debilitating relapse had begun. Diarrhea and weight loss returned then my blood pressure and electrolyte balance became dangerously low and beyond of limits.
When we (Gastro and GP doctors) recognized the flare up was not going to fix itself the Humira dose was upped to weekly injections and a 6 week Prednisone regimen was begun.
My astonishing and recent discovery, however, is determining that I likely caused and sustained this flare up with my recent and regular consumption of chocolate.
Last week’s prep, purge and fast for another colonoscopy must have returned my gut to a controlled, neutral, state of emptiness. Following the first meal, post-scope, the diarrhea was no longer present. “That’s good, but why?” After the second or third meal, post-scope, I ate a couple of baby Snickers, and Kit Kats. Diarrhea returned. I then discontinued all chocolate this past week and my lower GI is now normal again!
The flare up began right around the time (late January) we brought a large bag of bite size candy bars into the household. I’d eat a couple of them nightly. It was only following the colonoscopy purge and fast that I was able to efficiently isolate and correlate my food intake. When one is immediately ejecting any and every food item consumed, and losing weight so rapidly, you are reluctant to stop eating altogether and it isn’t easy to try and identify what food item might be that bad, “trigger” food.
Though I’ll miss the chocolate, this has been a grand discovery for me. I don’t dare retry any chocolate yet to double confirm this logical theory but I know that this week has been one of normal toilettes and great vitality for me. Life is good once again.
Other discoveries made this year:
Milk, ice cream, and yogurt remain intolerable but butter and most cheese items seem OK.
After 4 months I’m now able to enjoy a couple small cups of coffee per morning. That form of caffeine is apparently a non-issue for my gut. I’ve never been a regular drinker of soda pop.
After 4 months I became increasingly allergic to the Remmicade and had to quit it. We could not infuse it slow enough to prevent me going into anaphylaxis shock.
Humira is my magic bullet now.
I, too, let the Humira warm to room temp for 20-30 minutes before injecting it. Just gather the skin up at the injection site. Don’t pinch it too tightly as that’ll increase its resistance to the serum’s flow.
I first visited and appreciated this forum a fortnight ago during my discomfort and misery. Yes, the doctors provide scientific, anecdotal and academic advice but you forum members offer actual and contemporary experiences that provide me more clarity, understanding, acceptance, and hope to better manage this bewildering affliction.
Wishing all of you best regards and dry farts,
Paderewski
There is no known history of Crohn’s in my family. I was living a fit and active lifestyle here in the Rocky Mountains.
The only prior gastro distress in my lifetime was approx 10 yrs ago when I contracted Giardia (a diarrhea causing intestinal bug), twice in one summer, as I took up white water kayaking. Three years ago I had three minor surgeries, within a month and a half, to repair a lacerated finger and an inguinal hernia. Those procedures required abundant anesthesia and antibiotics that also provoked several weeks of persistent diarrhea. Both episodes were successfully quelled by taking Flagyl.
Throughout the Crohn’s attack I endured 85 days in two different hospitals, five different times, for tests, treatments, and intensive care.
Even with 2 colonoscopies, endoscope, pill cam, bone marrow biopsy, MRIs, blood cultures and myriad other intrusions, a Crohn’s diagnosis was frustratingly slow to eventually become confirmed. I atrophied from malnourishment, dehydration, infections, electrolytic upset and being bed ridden for too long. My normal weight of 150 lbs. tanked down to 91 lbs. The images or even thoughts of food became repugnant to me. Though I was starving, nothing would stay inside me long enough to get absorbed. Stools never showed blood nor did I experience severe pain. The gas cramps present during the diarrhea periods were very uncomfortable but generally and quickly relieved with expulsion of a gigantic fart.
The initial treatments included the regimen of massive doses of corticosteroids (Prednisone), 43 intravenous bags of Potassium, hundreds of caps of Pentasa, Omeprazole, anti-inflammatorys, antibiotics and Remmicade.
The mysterious development and aggressive advancement of this disease, coupled with the uncertainty of whether any of the treatments were actually healing anything, only deepened my feelings of despair and physical deterioration.
The “turn around”, however, did occur. We don’t know if any one treatment was profound enough to produce the rebound or if it was finally the combination of meds, treatments, nourishment, and time that put me on the pathway to remission.
Those significant elements of my treatment to acquire that first remission include:
14 hour infusions of TPN feeding through a chest catheter for 6 weeks;
Engaging a General Practitioner knowledgeable with Crohn’s and electrolyte/body chemistry balance;
Vitamin B12 injections;
Potassium supplement;
Nightly scoops of Cholestyramine;
Remmeron for depression and appetite stimulation;
Testosterone;
And of course the Ativan and Ambien needed to subdue the Prednisone / steroid buzz that creates anxiety and insomnia.
I thrived for 6 months as my appetite, weight and energy level returned to normal. Nevertheless, this late January, a debilitating relapse had begun. Diarrhea and weight loss returned then my blood pressure and electrolyte balance became dangerously low and beyond of limits.
When we (Gastro and GP doctors) recognized the flare up was not going to fix itself the Humira dose was upped to weekly injections and a 6 week Prednisone regimen was begun.
My astonishing and recent discovery, however, is determining that I likely caused and sustained this flare up with my recent and regular consumption of chocolate.
Last week’s prep, purge and fast for another colonoscopy must have returned my gut to a controlled, neutral, state of emptiness. Following the first meal, post-scope, the diarrhea was no longer present. “That’s good, but why?” After the second or third meal, post-scope, I ate a couple of baby Snickers, and Kit Kats. Diarrhea returned. I then discontinued all chocolate this past week and my lower GI is now normal again!
The flare up began right around the time (late January) we brought a large bag of bite size candy bars into the household. I’d eat a couple of them nightly. It was only following the colonoscopy purge and fast that I was able to efficiently isolate and correlate my food intake. When one is immediately ejecting any and every food item consumed, and losing weight so rapidly, you are reluctant to stop eating altogether and it isn’t easy to try and identify what food item might be that bad, “trigger” food.
Though I’ll miss the chocolate, this has been a grand discovery for me. I don’t dare retry any chocolate yet to double confirm this logical theory but I know that this week has been one of normal toilettes and great vitality for me. Life is good once again.
Other discoveries made this year:
Milk, ice cream, and yogurt remain intolerable but butter and most cheese items seem OK.
After 4 months I’m now able to enjoy a couple small cups of coffee per morning. That form of caffeine is apparently a non-issue for my gut. I’ve never been a regular drinker of soda pop.
After 4 months I became increasingly allergic to the Remmicade and had to quit it. We could not infuse it slow enough to prevent me going into anaphylaxis shock.
Humira is my magic bullet now.
I, too, let the Humira warm to room temp for 20-30 minutes before injecting it. Just gather the skin up at the injection site. Don’t pinch it too tightly as that’ll increase its resistance to the serum’s flow.
I first visited and appreciated this forum a fortnight ago during my discomfort and misery. Yes, the doctors provide scientific, anecdotal and academic advice but you forum members offer actual and contemporary experiences that provide me more clarity, understanding, acceptance, and hope to better manage this bewildering affliction.
Wishing all of you best regards and dry farts,
Paderewski
I am pleased that the meds are getting things towards the right direction to you, hopefully after this latest hiccup you will feel fully well again. Whilst diet is not considered the entire cause/cure of crohns I do believe it does play a part in symptoms - as you have found out. It looks like I am the opposite to you - I cannot tolerate coffee or tea at all but can eat choccie (yay for me but not the hips 
