New here hoping for some help :)

[kaelynsmom09]

Hi, about two months ago I had what I thought was the flu. I had a fever, nausea, vomiting, abdominal cramping and pain, and horrible diarrhea. I went to the er after suffering for nearly two weeks. They told me my abdominal pain was from a ruptured cyst and sent me home with orders to follow up with my obgyn. The obgyn after having a suspicion that it was GI related did a test for blood in my stool which turned up positive and referred me to a GI specialist. They performed a CT and did a colon and endo. Those tests showed gastritis, inflammation of my ileocecal valve and an ileal ulcer. The papers I was sent home with said possible celiac, microscopic colitis and possible onset of crohns disease. They have since done a capsule endo and found an ulcer in my small bowel as well. They've done three blood tests and said that they still can't rule out Crohn's. I've been living with pain (that gets pretty severe) in the lower right side of my abdomen and also at the top that spreads all over when it gets severe. Also diarrhea, night sweats, my menstrual cycle has become sparatic, lower back pain and I've lost about six pounds since I first got sick two months ago. I believe I need to get a second opinion from another Gi because I haven't actually talked with my doctor about any of this, he sends a nurse to handle the appointments and their answer to all my questions is always I don't know. They want me to do another blood test that will test for certain antibodies in my blood that might me indicative of crohns but that's not 100%. I asked what they would officially diagnose me with if the test was again inconclusive. She said they would leave it as IBS. Well maybe I'm wrong but I've been doing research and those are two totally different conditions am I right? How can they mix those two up? I'm so confused and at my witts end with all of this and I can't go on living in constant pain. I would like opinions from whoever is willing to give them...thanks

 

[DJW]

Hi and welcome to the forum. Sorry to hear your going through this. Inflamitory Bowel Disease can be difficult to diagnose in the early stages. IBS seems to be the fall back position of the doctors. IBD and IBS are two totally different things. Keep pushing for answers and get a second opinion. I'm sure some one more recently diagnose than me will be along to suggest different diagnostic tests. Best wishes and I hope you start feeling better soon.

 

[mish2575]

completely different. IBS - Irritable Bowel Syndrome. IBD (crohns & colitis) = Inflamatory Bowel Disease.

A lot of us are first diagnosed with IBS until it becomes more evident (severe) through either a colonoscopy or an Upper GI series. I think that until there are signs they can see with the naked eye (through the scopes) they can't definitively say it is colitis and what type (crohn's is a form of colitis).

There are generally no fast answers when someone is first showing the symptoms. There are no blood tests that can tell the docs that you have the disease.

 

[kaelynsmom09]

I've been doing research since I first was told about the possibility of crohns. A TON of information says that IBS doesn't cause damage to the GI tract (inflammation, ulcers, etc) is that correct? That's my dilemma...if they can see the inflammation and ulcers how do they NOT know its IBD?

completely different. IBS - Irritable Bowel Syndrome. IBD (crohns & colitis) = Inflamatory Bowel Disease.

A lot of us are first diagnosed with IBS until it becomes more evident (severe) through either a colonoscopy or an Upper GI series. I think that until there are signs they can see with the naked eye (through the scopes) they can't definitively say it is colitis and what type (crohn's is a form of colitis).

There are generally no fast answers when someone is first showing the symptoms. There are no blood tests that can tell the docs that you have the disease.

 

[mish2575]

I really dont know the answer to that. I'm sure someone will be able to answer though.

 

[UnXmas]

IBS does not cause inflammation or blood in the stool. IBS by definition does not cause any positive objective test findings - it's basically what doctors call the cause of digestive symptoms when they can't identify another cause (or when they haven't done enough tests to find the real cause).

However, Crohn's and colitis are not the only things that can damage the digestive system and cause blood - there are many other possible causes, some quite harmless; e.g. haemorrhoids can cause a test for blood in stool to come back positive. Crohn's and colitis are some of the most common causes however, so doctors often focus on confirming them or ruling them out early on. A colonoscopy and/or upper endoscopy are usually the best way to detect Crohn's, and biopsies are taken to assess the type of inflammation present, if inflammation is found.

 

[kaelynsmom09]

Thank you for responding I spoke with the nurse yesterday and apparently the first nurse I spoke with wasn't familiar with my case (my dr's nurse was on vacation) anyway she explained to me that I DID have some form of IBD they just weren't positive which form yet, and that they haven't ruled out celiac disease either. I was told that the biopsy was negative by the other nurse and that it was ruled out but that's not the case. My nurse informed me that I had damage to the villi so the biopsy alone wasn't enough for them to rule it out since the evidence is there. So I have to have more bloodwork done. So they are gonna try to narrow down which type of IBD I have and if I could possibly have celiac sprue on top of that....

IBS does not cause inflammation or blood in the stool. IBS by definition does not cause any positive objective test findings - it's basically what doctors call the cause of digestive symptoms when they can't identify another cause (or when they haven't done enough tests to find the real cause).

However, Crohn's and colitis are not the only things that can damage the digestive system and cause blood - there are many other possible causes, some quite harmless; e.g. haemorrhoids can cause a test for blood in stool to come back positive. Crohn's and colitis are some of the most common causes however, so doctors often focus on confirming them or ruling them out early on. A colonoscopy and/or upper endoscopy are usually the best way to detect Crohn's, and biopsies are taken to assess the type of inflammation present, if inflammation is found.

 

[wild_one353]

IBS and IBD are very similar, but IBD is more life threatening and absolutley needs treatment because of the higher inflammatory response which can be very damaging.

both conditions are believed to respond to a new treatment that restores healthy bacteria into the digestive tract with a new treatment in FDA trials- read more here- http://www.crohnsforum.com/showthread.php?t=52400

 

[UnXmas]

Thank you for responding I spoke with the nurse yesterday and apparently the first nurse I spoke with wasn't familiar with my case (my dr's nurse was on vacation) anyway she explained to me that I DID have some form of IBD they just weren't positive which form yet, and that they haven't ruled out celiac disease either. I was told that the biopsy was negative by the other nurse and that it was ruled out but that's not the case. My nurse informed me that I had damage to the villi so the biopsy alone wasn't enough for them to rule it out since the evidence is there. So I have to have more bloodwork done. So they are gonna try to narrow down which type of IBD I have and if I could possibly have celiac sprue on top of that....

I'm glad it sounds like you're making some progress and getting some answers. It does make you wonder where the first nurse was getting her information from - covering another nurse's workload shouldn't be resulting in making that kind of error! :yrolleyes:

 

[kaelynsmom09]

yes it does make you wonder, I will be speaking with the dr about it at my appointment this week. I think she was new and kind of not familiar with things but she should have just told me she didn't know and found someone that did. Not just give me false answers. I almost switched doctors because of it...

I'm glad it sounds like you're making some progress and getting some answers. It does make you wonder where the first nurse was getting her information from - covering another nurse's workload shouldn't be resulting in making that kind of error! :yrolleyes: