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08-26-2015, 12:27 AM   #1
Diselfitter
 
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I just want to first say hello, I am thankful for this forum, and the information the members here have provided.
I am 53y/o male, as long as I can remember, I have always had intermittent issues with my guts. As a child I was given paregoric to reduce the pain, and colicky symptoms, as I got older, I just cut out problematic foods, and road out the flairs,because the were not horrible. About 12 years ago all hell broke lose, I was sicker than I've ever been, and was,hospitalized with perforated diverticulitis, resulting in a colon resection, 2weeks stay in the hospital. But no further test were done, no real follow up.... Since I've had mild flairs, but always manageable. 2 years ago it hit hard again, my PCP put me on a course of antibiotic, and pain meds, and was scheduled for a colonoscopy 6weeks later. It was then I was diagnosed with Crohns Desease, and was placed on Lialda. This helped, and all was good, with only the occasional mild flair ups. I watched my diet just to be on the safer side. Despite my what seems like my best effort, the Crohns was rearing its ugly head, starting with GERD for no real reason, OTC melds provided very temporary relief.
Recently 8/10/15 I was crippled with pain, 30+ times a day running to the bathroom, I stopped absorbing foods, and became malnourished, lost nearly 20 pounds. I honestly thought I was gonna die. As I look back, this flair started much earlier. I had uveitis (eye pain) I couldn't resolve with drops, or pain meds, Tylenol, Advil (a no no), nothing was touching it. Then I started having what I thought was unrelated symptoms, which I learned is EIM (Etra Intestinal Manifistations.) my skin was hurting, I had this skin irritation on the side of my nose/cheek, tired for no real reason, mild belly pain, bloating, and a heaviness in my mid-section.... Then it, hit a week of diarrhea, followed by severe lower abdominal pain. I waited a week just to be sure.. Once I was sure I was deep into this flair, I got worse, and now I was actively bleeding not just a little, but pouring blood out every time I went to the bathroom. This went on through the night, and I was now week, pale, on the verge of passing out... Being stubborn I waited and luckily it stopped. I called my PCP to try to get in, knowing I needed treatment. But I was blocked from going in, because my Dr., was on vacation, and none of his partners were willing to see me. I called to get in to see my GI Dr.,but she was out as well, and not available for another weeks. Her staff RN set me up with a host of labs, and got me in to see another group of,Dr.'s and a CT scan. By now the EIM's are out of control, both my knees swelled so badly I couldn't walk, bend, I was in the worse pain of my life, my guts, my knees, my skin, my eye/headache.... Nothing was given until the Ct scan ruled out perforation, vs inflammation due to Crohns.... I'm not one to cry, nor have I cried from pain since I was 14 y/o.... But then intense pain, no sleep, and a feeling of helplessness I broke down and cried, my wife knew this was serious, she never seen me like this, and I tried hard for her not see me this way.
Once cleared, I was promptly put on 40mgs of prednisone a day, oxycodone, bentyl. After missing work, not eating, and staying in bed, other my frequent, and painful visits to the bathroom both in the guts and the knees... I finally got in to see my GI Dr. .. The plan is now to continue with the prednisone, Lialda, pain meds PRN, until I can start Remicade infusion and Imuron therapy a month form now! That's the earliest I can get in. I'm finally in near total remission, thanks to the prednisone.... I am eager to get this therapy under way, and back to normal or near normal....This being the worst I've ever felt, I don't want to do this twice ever!! As much as I hate being on prednisone, because of the insomnia, bouts of mania, and the next day complete exhaustion, nite sweats... I am not going to just stop it. I know what happens when one stops... Plus... I can feel the Crohns flair is still simmering, and coming off before starting Remicade/Imuron..... I will be in serious trouble. I've never been one to be fully compliant, especially when feeling better.... But I promised myself, and my Dr.. That I would be fully compliant.... I am just too scared to have another out of control flair.
I know this was long, but I really wanted to share everything.
What I wish looking back... Is that even though the optomologist, the primary care Dr., suspected some sort of Autoimmune Disease, there was no deeper studies done... Not sure why... But instead I was given meds to sooth and ease the symptoms, but not treat the disease or at least put me in touch with a Specialist who could. Not until years later... Now I feel like I am being treated accordingly, and my Dr., is great as well as her staff... I am no longer a passive patient, I've read, studied, and feel well informed, I agree with her treatment, we discussed,follow up, back up plans, and what to do if another flair up occurs.
My best advice is one that comes from my experience is this... If you suspect IBS, Ulercitive colitis, Crohns, or autoimmune disease or your Dr., does... Demand seeing a specialist, to confirm or rule out diagnosis... Don't just settle for bandaid type treatments or meds that sooth... It only delays your diagnosis, and real care.

Last edited by Diselfitter; 08-26-2015 at 01:06 AM.
08-26-2015, 11:28 AM   #2
Om3ga1
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I find it astounding that you never were referred to a GI. That's almost malpractice to leave to hanging like that for so long.
08-26-2015, 11:35 AM   #3
Madhu
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Wow you've really been through hell Takes a while until we find the right doctor, right? I hope you feel better soon. Take care
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-26-2015, 09:43 PM   #4
Diselfitter
 
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Thanks for those post.... The prednisone certainly helped, and I am grateful for that....as much as I suffered, I learned so much....the most important thing is never be a passive patient.
08-30-2015, 04:01 PM   #5
David
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Welcome to the community I hope to see you around.
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08-30-2015, 04:13 PM   #6
buttER
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Thanks for those post.... The prednisone certainly helped, and I am grateful for that....as much as I suffered, I learned so much....the most important thing is never be a passive patient.
But when you are that ill it is difficult not to be passive, just trying to form a sentence takes up too much energy. In my case when a doctor said nothing is wrong I just crawled back to bed rather than question their reasoning.

I really hope things are looking up for you and that the new treatment regimen keeps a flare up at bay.
09-01-2015, 11:22 AM   #7
Om3ga1
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Welcome everyone on this forum. I am also a new member here and happy to join this community. Its really a helpful for me and also very informative.
Haven't been here long myself. But I'm glad to be here.
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