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Crohn's Disease Forum » Your Story » Newly Diagnosed


02-24-2014, 09:49 PM   #1
sr877378
 
Join Date: Feb 2014
Location: Kingston, Ontario

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Newly Diagnosed

Hello,

my name is Sara I am 22 from Ontario, Canada. I went backpacking to Southeast Asia this past spring and things haven't been the same since! While I was on my trip i was mugged on the beach leaving me with a leg injury. I was admitted to hospital there (more like a portable clinic on an island) and was left in a bed there doped up on narcotics for 9 days. After I could leave the island I was flown home. A couple weeks later the doctors found a blood clot in my leg and I was put on blood thinners. By the end of the summer I was walking and becoming more mobile very slowly. Late summer/early fall I began to notice bowel differences- they looked strange and unhealthy. As summer turned to fall I mentioned it to my doctor. Around October I began to get tested for parasites witch I was likely to have picked up on my trip. My bowel movements were increasing in frequency and decreasing in volume, becoming less formed and harder to control/pass. The increasing tiredness that I assumed to be from the blood thinners increased and I began to feel exhausted. I was nauseous after eating. The stool tests showed positive for the parasite blastocystis hominis and I began a flagyl treatment. I couldn't tolerate the flagyl and for seven days and nights I lied on the bed or my floor in pain so sick to my stomach I thought nothing could ever feel worse. I vomited and tried to wait it out.

I finished the seven days but couldn't finish my last three days. My symptoms continued to get worse and I was referred to an infectious disease doctor and eventually GI. I had a colonoscopy and upper endoscopy revealing inflammation and possibly ulcers. My doctor says I either have ulcerative colitis or crohn's colitis but he suspects crohns. I often have a pain/cramp in my lower right abdomen and my stools have been completely off for months now. Either straight watery or small stringy green pieces that are hard to pass. I pass large amounts of mucous but I don't think I pass much or any blood as far as I can see. Often i see oil on the toilet water. I've lost about 15 pounds or so and my exhaustion is affecting every aspect of my life. I'm exhausted when I get up, have about an hour or two midday of clarity before I get foggy and tired again. I can't concentrate, I'm depressed and I can't see to get my emotions in check whatsoever. I have been on 4 pills of mezavant for 14 days with no improvement. I have been on the SCD diet for 7 days which has taken my cramps/nausea away but I assume thats because I'm barely eating now and living on about 300cals/day. I am told today that I am to start on prednisone soon to see if that will work.

Im pretty devastated by this news as I wanted to try anything and everything else to try and avoid taking steroids. I am going to attempt to make Rick Simpson oil this weekend because I hear the results are fantastic. I am also doing research about the fecal transplants. I think I've covered just about everything, sorry for the graphic descriptions but i figure this is the place to be honest! All in all I know that my Crohn's is not severe and I still maintain a quality of life right now so I hate to complain because i know so many others are worse off, but i can't help feeling really sad right now. I selfishly wish that I had a little more time to be youthful and have fun and travel, eat food, stay at my friends house without care, continue working outdoors without a bathroom close by.. I used to be so energetic and adventurous and now I feel like a different person, sad and tired. i feel like I'm missing out. Anyways that's where I am now, kind of in a limbo between this and taking the prednisone, hoping for some good luck. Thanks for reading
02-24-2014, 11:36 PM   #2
guttermonk
 
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Join Date: Feb 2014
Location: Chicago, Illinois

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Too bad you've had to end a cool trip like that on such a shitty note. Hopefully you get some good news back soon! Just know you're living through the worst of it...its a bumpy road to remission but you'll figure out which things work for you and which to avoid. Sounds like you're doing a lot of research on your own keep it up...I talked to a looooot of GI's with egos too big to admit they didn't know what they were doing with the Crohn's.

keep yer head up and you'll be back to adventurin in no time!!
Best of luck Sara
02-25-2014, 06:42 PM   #3
sr877378
 
Join Date: Feb 2014
Location: Kingston, Ontario

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thankyou!!! it really is good to know i'm not going through this by myself
02-25-2014, 10:52 PM   #4
pink&green
Senior Member
 
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Hello Sara and good job on doing research there is definitely lots of support and advice on here. Like guttermonk said once your on the right maintenance medicine you will be able to do things you love.
__________________
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
02-25-2014, 11:16 PM   #5
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

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Hi Sara, and welcome to the forum. I'm sorry you've been having such a hard time. You should really try to eat more. That's not enough to keep you going. If you don't have fat to lose, you will start to lose muscle. Fatigue is a part of Crohn's for many people, but it could be your lack of calories as well. I went to a dietician for help, to boost my caloric intake. There's a lot of information here to help you. Hang in there!
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
02-26-2014, 10:09 AM   #6
sr877378
 
Join Date: Feb 2014
Location: Kingston, Ontario

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Thanks for the replies guys, yes starting today I am going to try and slowly increase my cals, baby steps!
02-26-2014, 10:43 AM   #7
organic
 
Join Date: Feb 2014
Hello Sara and good job on doing research there is definitely lots of support and advice on here. Like guttermonk said once your on the right maintenance medicine you will be able to do things you love.
wow !!!! that's a lot
organic
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