Share Facebook
Crohn's Disease Forum » Your Story » Just found out today help !!!


08-05-2015, 06:23 PM   #1
heartsnstars4e
 
heartsnstars4e's Avatar
 
Join Date: Aug 2015
Location: oceanside, New York

My Support Groups:
Just found out today help !!!

I am a 55 years old woman. Who has had no problems with my intestines and bowels until last nov when I developed c diff. I have had mostly constipation and thin stools and some cramping . It has been bad for the last 2 months . I had a cat scan a month ago and ended up in the er with diverticulosis. I am still having pains and the cat scan I recently took showed the diverticulosis resovled and that I have just the diverticulitis. Being that I still have pains the dr ran tests . My ASCA/PANCA inflammatory bowel panel showed my s cerevisiae antibody igg at 45 units. normal is 00 - 24.9... Being that my ASCA+/PANCA the doctor says this is suggestive of crohns disease. I have never heard for this disease until today. My doctor gave me no advice how am I supposed to manage this . I have read about this a lot to day online and many people have there intestines removed. Can someone please tell me why they are removed? I am confused. Can people also tell me what the symptoms they had where. I have never had diarrhea or blood in my stool ever . I do have pain and cramping and constipation. Someone please talk to me about this I don't know what to do... Thanks Judy
08-05-2015, 07:10 PM   #2
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Hi and welcome.

Is your doctor a GP or a gastroenterologist?
If he/she is a GP you really need to see a gastroenterologist.

My best advice is to go to the lifpbrary and get a book on Crohn's written by a gastroenterologist.
Be very careful with the internet. There is a lot of miss information and worse case scenarios.

Proper treatment is critical to maintain remission and hopefully avoid surgery.
Surgery is often required when complications set in. They include things like: obstructions, uncontrolled disease, etc.

Ask us lots of questions.

Sending you my support.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
08-05-2015, 07:52 PM   #3
teeny5
Senior Member
 
teeny5's Avatar
 
Join Date: Jul 2008
Location: California

My Support Groups:
Hi welcome to the forum. I have Crohn's only in the large intestine and GERD.

My symptoms when flaring can include:

Pain in area at or below belly button - on both left and right side
Diarrhea 4-6 times a day (normal BM for me is once per day)
Night sweats
Racing heart rate
Pain after eating
Loss of appetite due to pain
Weight loss (due to not eating)
Hard to swallow food or keep it down at times
Fatigue
Anemia
Hair loss (probably due to meds)

Symptoms vary due to location of the disease and severity. I have only had blood in my stool once or twice.

You should see a gastroenterologist so you can get a treatment plan. A regular dr would not be able to adequately treat the disease, you need a specialist. I was told I will be on, at minimum, a maintenance medication for the rest of my life. The goal of my treatment has been to get the inflammation under control...to get to remission...and to maintain remission for as long as possible. Damaging inflammation can lead to surgery to remove the damaged areas of intestine. Everything I have read is that the disease often has periods of remission and then flaring. I am lucky to be in remission now, but more than likely will go back into a flare, just don't know if it will be weeks, months, or years from now. There is no cure, but you never know!

Feel free to ask questions here. Many here, I am sure, can recommend some good books if you are interested.
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-05-2015, 08:49 PM   #4
heartsnstars4e
 
heartsnstars4e's Avatar
 
Join Date: Aug 2015
Location: oceanside, New York

My Support Groups:
How did you know you had crohns? What tests did you have I have only had this blood test. The doctor who diagnosed me is a GI doctor. I am going to a different GI doctor at a major hospital in a week . What tests will confirm I have this ?
08-05-2015, 08:58 PM   #5
DJW
Forum Monitor
 
DJW's Avatar
 
Join Date: Jul 2013
Location: Ontario

My Support Groups:
Mine was diagnosed with a scope and biopsies.
08-05-2015, 09:07 PM   #6
teeny5
Senior Member
 
teeny5's Avatar
 
Join Date: Jul 2008
Location: California

My Support Groups:
I had a CT scan, upper GI series, and colonoscopy. Initially my Dr ordered blood tests that showed inflammation and then he ordered a CT scan which showed inflammation in the colon. He referred me to the gastroenterologist who ordered an upper GI series and colonoscopy. The upper GI was to see if there was inflammation any where higher up in the digestive tract. The colonoscopy was where they visually confirmed Crohn's. I had the Prometheus test done, but it came out negative.

After diagnosis they also periodically order blood tests to check for inflammation and when diarrhea is present he orders stool sample tests to check for any bacteria or blood. Sometimes the blood can be in traces and is not visible to the eye. When I was very sick I saw my gastroenterologist every month. Now in remission I see him every 6 months. If symptoms come back he has me go in ASAP and orders the stool tests (to ensure no bacterial infection). I take Colazal and Prilosec every day.

I hope you get a concrete diagnosis quickly, but be aware that it can take a long time. So many diseases can have similar symptoms. So try not to get frustrated...I know way easier said than done. It can be more productive to focus on getting the right treatment plan/meds to make symptoms better than a definitive diagnosis. There are also people that get one diagnosis, then have it changed later. My medical record has gone from enteritis to colitis to indeterminate colitis to Crohn's disease to now just inflammatory bowel disease. Because mine is only in the colon there is a chance it could be Ulcerative Colitis even though everything else says Crohn's (well everything except that darn Prometheus test). I believe I have Crohn's.
08-06-2015, 06:05 AM   #7
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
Hi, they confirmed with just a blood test? I mean blood test is definitely useful but the first step is a colonoscopy. My husband was diagnosed that way and to assess the severity, he had an MRI which showed clearly where he was affected. I hope your GI does a colonoscopy, endoscopy and a pill cam test (These were done first), then my husband was referred to a specialist GI who did the MRI. Sorry you have to go through this and good you joined here. Try not to refer too much in the internet, I always stick to this forum because the internet is a scary place and this forum always has answers to my situation and I can relate to it. As for the surgeries, not everyone ends up with intestine removal. I don't have experience in that area but from what I read, it is a long term complication of the disease that leads to it. There are biologics such as Remicade, Humira to bring you into remission first. Read through the forum and you will get more answers. Keep us posted. Good luck
__________________
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
08-06-2015, 10:44 AM   #8
heartsnstars4e
 
heartsnstars4e's Avatar
 
Join Date: Aug 2015
Location: oceanside, New York

My Support Groups:
Thank you all for your advice . I so appreciate it. I spoke to my gastro on the phone this am. He said he wants to hold on further testing till my cdiff goes away . That can also cause inflammation. I also just got over a bout of diverticulosis. When it rains it pours. I just wish someone would give me something for all this pain. I will just continue only having liquids. I have suffered for years. I cannot believe it took this long to find out what has been wrong with me. I will keep you all posted. Any recommendations on what to eat if I do decided to eat food.
08-06-2015, 11:54 AM   #9
Cody_1980
 
Cody_1980's Avatar
 
Join Date: Jul 2015
Location: champaign, Illinois
I think food tolerance is different for everyone. I was only diagnosed 4 1/2 weeks ago but I know for sure I cannot eat Broccoli and Asparagus killed me so maybe that will be of help to you. For what it is worth I am going through a 2 1/2 month flare and I have pain everyday so I'm not sure what to do/eat either.
__________________
Diagnosed July 2015

Asacol 800 2 pills x3 daily

Zantac 300mg

Still experimenting with what to/not to eat.
08-06-2015, 06:14 PM   #10
heartsnstars4e
 
heartsnstars4e's Avatar
 
Join Date: Aug 2015
Location: oceanside, New York

My Support Groups:
I been having pain everyday. Some times I am constipated for days and sometimes like today I have nothing but loose movements. Not eating anything today just drinking liquids the pain is to much for me when I eat anything.
08-06-2015, 09:09 PM   #11
teeny5
Senior Member
 
teeny5's Avatar
 
Join Date: Jul 2008
Location: California

My Support Groups:
You can check out this thread for what some common safe or not safe foods are for many people.

http://www.crohnsforum.com/showthread.php?t=17707
Reply

Crohn's Disease Forum » Your Story » Just found out today help !!!
Thread Tools


All times are GMT -5. The time now is 12:46 AM.
Copyright 2006-2017 Crohnsforum.com