Crohn's Disease Forum » General IBD Discussion » Sick and frustuated - really long

09-08-2007, 12:13 AM   #1
sick and frustuated - really long

Hi everyone. I really need some advice. I am new to this board and just want to get opinions from experts on crohn's. I have never been truly diagnosed with crohn's, but had biopsies taken in aug. 2003 that could not rule out crohn's. At that time, my entire descending colon was inflammed as was my terminal ileum. I had gross bloody stools and was hospitalized for a week and I was told it was just general colitis. I went home and continued haing 10 -12 stools/day for approx. 2 mos. Switched GI docs, who also noted that I had anal skin tags. He then put me on steriods and antiboiotics, which helped some, my symptoms were improving, but not as quickly he though they should. He then scoped me to find a healthy colon, biopsies negative. He then diagnosed me with severe IBS. I eventually got down to approx. 4 stools/day, had to watch what I ate, but was ok for about 1 yr - I was pregant with my son during that time. Then in March 2005, the severe pain, severe cramping, severe diarrhea came back and brought with it mouth ulcers. I had approx. 3 GROSSLY bloody stools at this point and went to see my doc. He said that he wanted to scope me, but there was no time available until Aug. 2005. Well you probably know what happened - normal colon, normal biopsies - he even told me before he did it, it would probably be normal because my symptoms, had resolved. I had been fine - still had to watch some foods, still had 3-5 stools per day form then until this summer - probably June 2007. My symptoms continue to worsen again - more frequent stools, I can basically only eat carbs and chicken without getting sick, severe abdominal cramping and abdominal pain that does not go away after having a stool, occassional mildly bloody stools - streaks in stool and sometimes enough to color the water red, continued tongue ulcers. Tonght I have been the sickest I have been since that first night I got sick in Aug 2005. The pain and cramping were unbelievable. The pain never ended until I took one of my father's pain pills - I had too.
My family is telling me to go to my GI doc, but I am so afraid that I will go, he'll say he wants to scope and it will be normal again, all of that for nothing and I am at the IBS diagnosis again - not that that is not good, but when I am so sick, I want more help than what they give me. I have read it can take awhile for the diagnosis of crohn's. Should I go back to the same doc or shoud I get a second opinion or do you guys think that what I have does sound like IBS?

My brother has been ill with my sympotms, yet more severe since his late teens- he is 28 now. He has not been scoped sonce maybe he was 21. The GI doc he goes to is strictly for IBS and has not brought up a scope. His symptoms almost never end. He takes like 3 or 4 immodium a day and still had diarrhea with and without blood every time he eats - he even jokes about his mid-meal "crap". My brother has not pursued geting a more definitve diagnosis, because basically he just does not want to.
My 4 yr old daughter also has an autoimmune disease.

Can somebody please give me some feedback/insight. I am really frustuated and just do not know what to do.
If you actually read down to here, thank you so much for taking the time to read my story.
09-08-2007, 09:09 AM   #2
Senior Member
Join Date: Jun 2006
Location: Halifax, NS, Canada

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I have to agree with the advice of your family.. you HAVE to see a GI. None of us on this site are 'EXPERTS'... none of us here can legitimately provide a medical opinion.
Fearing what the verdict will be, or that you'll get another all clear, it doesn't change the fact that you need an 'EXPERT' medical opinion, based on the tests that they run.
One thing you might do is ask if you can have a sigmoidoscope test done earlier. it's not as complete, doesn't go as far as a colonoscopy, but it would show involvement of the lower colon, and indication of what the rest looks like. It's not pleasant, but it is easier for them to do, so it should have a shorter wait time. As for your brother or your daughter, for now I'd suggest you concentrate just on you

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
09-08-2007, 11:55 AM   #3
Cara Fusinato
Sarcastic Forum Comedian
Join Date: Sep 2006
I agree with Kev! You need to get into the GI Doc immediately. If your GI doc is too busy or can't scope you for months, you need to either insist they scope you immediately in the ER or get a new GI doc who can see you and scope you immediately. I do medical transcription and you don't know how many people get scoped after being admitted from the ER. I would say call your GI doc. on Monday and pitch a major fit to have it done Tuesday or Wednesday or get yourself to your ER Monday after your phone call to the GI doc, get yourself admitted, and get the full workup through the hospital. You should definitely have the full colonoscopy as well as the upper GI series with small bowel followthrough and a full blood panel too and heck, insist on a CT scan while they are at it! I've had ALL three of those and each time they each indicated Crohn's. Give your family history, give your past medical history, and cry, that always helps too. You need to know, not in weeks, but now while it is causing problems. Most insurances allow "self referral". You can call your insurance company and ask them which doctors you can call or which ER's you can go to or how you can get yourself admitted. Don't let our lovely medical system push you around, insist that you get the tests you know you need. Things CAN move fast when there is desperate need. If you have a good GP, call and tell them what is going on. I have a good GI doc, but my GP gets me referred places in a hurry when I need it. Hang in there and let's hope they can finally find what is going on and help you with it.
09-10-2007, 12:52 AM   #4
Senior Member
Join Date: Jun 2007
Location: Oklahoma City, Oklahoma
A second opinion is not a bad idea either. But you should get in to assess the situation soon.
Hospitalized & Diagnosed: 2004
Mission trip to India: 2004
Mission trip to Philippines: 2005
Contract job in Iraq: 2006
Abscess drained, temp. ostomy: June 2007
Lap-right-hemicolectomy: October 2007

09-10-2007, 03:18 AM   #5
Senior Member
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Join Date: Nov 2006
Location: Beirut, Lebanon
You should have asecond opinion with another GI for sure. Also as far as I know, blood in stool is not a sign of IBS but more of IBD.... I'm not an expert, so talk to a GI soon, and good luck.....

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