My name is David and I am a 19 year old male. My case is somewhat strange and rare. I am going to go through in detail to see if anyone has had any similar experience.
I was diagnosed with Crohn's disease in June 2013 after 4 months of very painful dysuria (pain during urination) and occasional bloating/cramping/lower abdominal pain, mostly after eating large meals that were "unhealthy" (burgers, pizza, etc). The "flare ups" occurred only a few minutes after finishing the meal and they were somewhat uncommon. Other than that, no other symptoms.
After weeks of trying to figure it out, they finally spotted inflammation in the ileum after CT scans and a colonoscopy and endoscopy. I was given prednisone. I was eventually transitioned to 6-MP. This all occurred June and July 2013. Throughout this time, I still had the extremely painful urination (pain levels were the worst I have ever had, worst than a collapsed lung which happened two years ago). The GI doctor thought that the inflammation had gotten so bad, that it was pressing against the bladder, causing the pain.
I "sucked up" the pain and continued with my life. In the middle of August, I had a slight fever that lasted only 20 minutes. Four hours later, I had a fever again, but it was much worse: extreme, uncontrollable shaking and dizziness. I was taken to the hospital and I became delirious and was hallucinating. Heart rate increased to 175 bpm+ and blood pressure decreased drastically. I blacked out (well, I don't remember anything for two days).
Woke up two days later in the ICU. I found out that I was septic (E. coli had spread throughout my bloodstream causing organ failure) and lucky to be alive. The doctors and surgeons believed that there was a perforation in my ileum that leaked out bacteria. Now, this is where it gets confusing. They weren't/aren't sure if the perforation occurred 6 months ago and an abscess formed, causing the dysuria and then it finally burst or if the perforation just occurred and there was a phlegmon causing the pain. An important note: the dysuria disappeared after the sepsis as well as any abdominal pain.
I was in the hospital for a week given IV antibiotics and IV fluids and I didn't eat or drink for a week. I was sent home with a PICC line for two weeks and then transitioned to oral antibiotics (flagyl and cipro). All this time I decided to go on an all liquid diet of only Ensure plus for 6 weeks. I was eventually weaned off of the prednisone to just the 6-MP during this time.
I switched from flagyl to augmentin since my body wasn't handling the flagyl well. My doctor then switched me to just Avelox in the beginning of October 2013, but I stopped taking it because of tingling sensations in my hands (a dangerous side effect). Around this time, I started to transition over to food. I am very into the holistic approach with diet (no gluten, dairy, red meat, spices, sugar, etcetera). This diet has been working great; no flare ups, problems, etc. I also take digestive enzymes before eating. I take many supplements (fish oil, B-12, probiotics/VSL). Most of my meals include salmon, cod, chicken, smoothies/juices using a juicing machine, eggs. I use coconut oil for cooking, rarely any salt, I only eat fermented fruits and vegetables, only drink water besides juicing occasionally, etc. The diet is very restrictive but I have no problems or symptoms.
Now, to present day, I have been on this diet for two weeks. I am only on 6-MP as well.
Now to the question. My GI doctor thinks that I should have an ileocolic resection as the ileum will not heal medically. I have talked to the team's general surgeon who is EXTREMELY opposed to surgery, exclaiming that he would not personally do the surgery even if I insisted. The urology surgeon also was opposed to surgery pertaining to the phlegmon. I saw another GI doctor who thinks I shouldn't rush to surgery, but would like to do his own imaging (MRI soon). My primary GI doctor talked to a GI surgeon about my case and the surgeon thinks I should undergo surgery (I haven't scheduled an appointment with him yet).
To anyone who has or had a similar experience, should I undergo surgery or try to resolve it with medicine? I am listing pros and cons of each. Note: I am trying to leave drugs (Remicade/Humira/etc) as the last option due to side effects/complications/etc, I would much rather resolve the problem through diet.
Pros of Surgery:
-Will remove diseased bowel
-If I go through with surgery soon, I will be able to start college in January (had to defer because of sepsis)
-Could potentially keep myself in remission for a while if no other part of the bowel becomes inflamed
-Will prevent leakage/sepsis from occurring
-Possibility that surgery will eventually be needed, why not do it now since I have nothing to do up until January
Cons of Surgery:
-Complications could happen, surgeon told me the risks are very intense (months of hospitalization)
Pros of Medical Option:
-No surgery
-Be able to attend college
Cons of Medical Option:
-Sepsis/perforations could occur
-If sepsis/bad flare up occurs, I will be in Ithaca, NY (I am attending Cornell University), which is sort of "in the middle of nowhere"
More notes: while I shouldn't base surgery just on going to college, it is a very important part of my life and deferring again and again would not be ideal, I would like to continue with my life. While I do not use recreational marijuana, I am interested in medical marijuana (not smoking but edible/vaporizing) because of studies shown it can help quell inflammation.
I appreciate any advice, help, or experiences. I am sorry for my long, tedious, asinine post, but I am just trying to get in all the details. Thank you
I was diagnosed with Crohn's disease in June 2013 after 4 months of very painful dysuria (pain during urination) and occasional bloating/cramping/lower abdominal pain, mostly after eating large meals that were "unhealthy" (burgers, pizza, etc). The "flare ups" occurred only a few minutes after finishing the meal and they were somewhat uncommon. Other than that, no other symptoms.
After weeks of trying to figure it out, they finally spotted inflammation in the ileum after CT scans and a colonoscopy and endoscopy. I was given prednisone. I was eventually transitioned to 6-MP. This all occurred June and July 2013. Throughout this time, I still had the extremely painful urination (pain levels were the worst I have ever had, worst than a collapsed lung which happened two years ago). The GI doctor thought that the inflammation had gotten so bad, that it was pressing against the bladder, causing the pain.
I "sucked up" the pain and continued with my life. In the middle of August, I had a slight fever that lasted only 20 minutes. Four hours later, I had a fever again, but it was much worse: extreme, uncontrollable shaking and dizziness. I was taken to the hospital and I became delirious and was hallucinating. Heart rate increased to 175 bpm+ and blood pressure decreased drastically. I blacked out (well, I don't remember anything for two days).
Woke up two days later in the ICU. I found out that I was septic (E. coli had spread throughout my bloodstream causing organ failure) and lucky to be alive. The doctors and surgeons believed that there was a perforation in my ileum that leaked out bacteria. Now, this is where it gets confusing. They weren't/aren't sure if the perforation occurred 6 months ago and an abscess formed, causing the dysuria and then it finally burst or if the perforation just occurred and there was a phlegmon causing the pain. An important note: the dysuria disappeared after the sepsis as well as any abdominal pain.
I was in the hospital for a week given IV antibiotics and IV fluids and I didn't eat or drink for a week. I was sent home with a PICC line for two weeks and then transitioned to oral antibiotics (flagyl and cipro). All this time I decided to go on an all liquid diet of only Ensure plus for 6 weeks. I was eventually weaned off of the prednisone to just the 6-MP during this time.
I switched from flagyl to augmentin since my body wasn't handling the flagyl well. My doctor then switched me to just Avelox in the beginning of October 2013, but I stopped taking it because of tingling sensations in my hands (a dangerous side effect). Around this time, I started to transition over to food. I am very into the holistic approach with diet (no gluten, dairy, red meat, spices, sugar, etcetera). This diet has been working great; no flare ups, problems, etc. I also take digestive enzymes before eating. I take many supplements (fish oil, B-12, probiotics/VSL). Most of my meals include salmon, cod, chicken, smoothies/juices using a juicing machine, eggs. I use coconut oil for cooking, rarely any salt, I only eat fermented fruits and vegetables, only drink water besides juicing occasionally, etc. The diet is very restrictive but I have no problems or symptoms.
Now, to present day, I have been on this diet for two weeks. I am only on 6-MP as well.
Now to the question. My GI doctor thinks that I should have an ileocolic resection as the ileum will not heal medically. I have talked to the team's general surgeon who is EXTREMELY opposed to surgery, exclaiming that he would not personally do the surgery even if I insisted. The urology surgeon also was opposed to surgery pertaining to the phlegmon. I saw another GI doctor who thinks I shouldn't rush to surgery, but would like to do his own imaging (MRI soon). My primary GI doctor talked to a GI surgeon about my case and the surgeon thinks I should undergo surgery (I haven't scheduled an appointment with him yet).
To anyone who has or had a similar experience, should I undergo surgery or try to resolve it with medicine? I am listing pros and cons of each. Note: I am trying to leave drugs (Remicade/Humira/etc) as the last option due to side effects/complications/etc, I would much rather resolve the problem through diet.
Pros of Surgery:
-Will remove diseased bowel
-If I go through with surgery soon, I will be able to start college in January (had to defer because of sepsis)
-Could potentially keep myself in remission for a while if no other part of the bowel becomes inflamed
-Will prevent leakage/sepsis from occurring
-Possibility that surgery will eventually be needed, why not do it now since I have nothing to do up until January
Cons of Surgery:
-Complications could happen, surgeon told me the risks are very intense (months of hospitalization)
Pros of Medical Option:
-No surgery
-Be able to attend college
Cons of Medical Option:
-Sepsis/perforations could occur
-If sepsis/bad flare up occurs, I will be in Ithaca, NY (I am attending Cornell University), which is sort of "in the middle of nowhere"
More notes: while I shouldn't base surgery just on going to college, it is a very important part of my life and deferring again and again would not be ideal, I would like to continue with my life. While I do not use recreational marijuana, I am interested in medical marijuana (not smoking but edible/vaporizing) because of studies shown it can help quell inflammation.
I appreciate any advice, help, or experiences. I am sorry for my long, tedious, asinine post, but I am just trying to get in all the details. Thank you
