| Posted By |
Message |
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
IBD-Chron's....
How were you or your loved one diagnosed? What tests were necessary? And, What are flare ups and How often do they occur? That's a lot of questions, I know.. But thanks for any answers.
|
Posted 11/6/08 6:57 AM  |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
I've had Crohns for about 30 years. I've always had a "mild-moderate" case.
I was diagnosed with a small bowel series x-ray at 16. You drink barium, it coats your intestines and they take pictures. Fun. (not) but not that bad.
I've taken many drugs over the years. It's never really been in remission. In 2007 I had a bowel resection and they cut out 8 inches of inflamed almost obstructed intestine. That was from many years of it affecting one part of my gastro tract, the ileum.
I avoid the foods that irritate the condition but combining it with meds, therapy and some holstic methods I've lived with it.
It has hindered me in some ways, but I live a very full life. Right now I'm not on any meds because we are TTCing. But after I have a kid (knock on wood) I'm going back on them. If I flare while pregnant, I can go on a short course of steroids to get me through which are safe for pregnancy.
Please FM me if you want to "talk". I hope you are feeling ok.
btw-everyone is different with this disease. Flares and issues are different with where the disease is in the gastro tract.
Message edited 11/6/2008 9:11:53 AM.
|
| Posted 11/6/08 9:10 AM |
| |
|
Angel321
...
Member since 4/08 15553 total posts
Name:
|
Re: IBD-Chron's....
Posted by siffleuse319
How were you or your loved one diagnosed? What tests were necessary? And, What are flare ups and How often do they occur? That's a lot of questions, I know.. But thanks for any answers.
I've had ibs-d for 12 years.
I have daily flare ups, my doctor has told me i'm one of the worst cases he's ever seen.
Tests: colonoscopy, endoscopy, i can't remember the name of the other ones - but in the past 2 years (i was hopeful that new chances have happened since i was last tested, but no), i've had about 5 or 6 tests - all came back with - IBS as the problem...
There are medications that you can take, I believe there were 3 or 4 - but none of them worked for me.
|
| Posted 11/6/08 10:59 AM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
I just want to add that many symptoms are the same for IBS and IBD but they are different. You can have both though and I think I do although I was never diagnosed with IBS on top of it.
Either way, they both suck.
|
| Posted 11/6/08 11:33 AM |
| |
|
Kris92
LIF Infant
Member since 5/08 298 total posts
Name:
Kris
|
Re: IBD-Chron's....
I was diagnosed with IBS after having different testing done: colonoscopy, small bowel series, endocapsule test, as well as abdominal and pelvic sonograms (for abdominal pain). My gastro thought that I had Crohns and had me on asacol for awhile until tests came back negative. The endocapsule test was the final one I had done (you swallow a pill that has a camera in it and it takes pictures of almost the entire digestive tract). It's a very frustrating road trying to figure out what exactly is going on, but you realize what you can eat and what you should avoid, and for me, extra stress always seems to make it worse. Currently, I'm not on a daily medication, but my doctor has me on Librax on an as needed basis.
|
| Posted 11/6/08 5:52 PM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
Thanks ladies. My docs want me to take the capsule endoscopy but I'm hesitant (ok, more like scared sh*t) about the electromagnetism and the risk of obstruction. So far of the 3 tests I've have only 1 was suggestive of Chron's. The other 2 were negative. And, I have no symptoms. So I'm confused as to why I would want to undergo the capsule test.
|
| Posted 11/6/08 9:07 PM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
what tests did you have?
|
| Posted 11/7/08 10:12 AM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
what tests did you have?
First: Colonoscopy. Results showed a dime sized area of small bowel inflammation (pathology report said it was both chronic and accute...which according to my GI, is not possible, it's one or the other)
Second: Blood work: Sedimentation Rate for Inflammation and Other Autoimmune Markers (General and GI specific). Results: All Normal. No Autoimmunity or Inflammation Noted in the Blood cells
Third: Small Bowel X Ray Series: Results: Normal. No observation of inflammation, scarring, ulcers or any other indicator of IBD.
|
| Posted 11/7/08 12:36 PM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
what are your symptoms? It doesn't sound like crohns.
You would have definite pathology and sed rates.
My sed rates were always low though and I had tremendous inflamation but you would have something.
|
| Posted 11/7/08 3:00 PM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
what are your symptoms?
I don't think I have any. I am very "regular" with no pain or diahrrea...not even in phases. I do have some pre-BM cramping (TMI..sorry), but it is quickly alleviated. I also have some spasms, every now and again. But that's more consistent with IBS I think. I get canker sores in my mouth a few times a year too. I heard that this could be Chron's related because it's in the GI tract. And, I have a slew of food and drug allergies, so it's obvious that my immune system is confused as it is. I really don't think I have any Chron's symptoms, but my doc said that I could have it without being symptomatic
|
| Posted 11/7/08 3:08 PM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
canker sores could be crohns but if you only have it in your mouth a few times a year it's quite the mild case. Almost mild enough to say you have nothing.
What brought you to the gastro? Why did you go through all that?
Have you been checked for Celiac?
|
| Posted 11/7/08 8:34 PM |
| |
|
JenG
Love my little boy!
Member since 6/05 2489 total posts
Name:
Jen
|
Re: IBD-Chron's....
Posted by siffleuse319
Thanks ladies. My docs want me to take the capsule endoscopy but I'm hesitant (ok, more like scared sh*t) about the electromagnetism and the risk of obstruction. So far of the 3 tests I've have only 1 was suggestive of Chron's. The other 2 were negative. And, I have no symptoms. So I'm confused as to why I would want to undergo the capsule test.
i work for a group of GI docs and we do the capsule endoscopy. it is actaully a very simple exam and gives the doctors A LOT of information as to what is going on with the patient. you swallow the capsule and wear a belt around your waist that records what the capsule is taking pictures of. it takes thousands of pictures. we do a lot of them and i have not heard of anyone getting obstructed. you pass the pill through a bowel movement. we have alot of docs refer their patients to us for the capsule endoscopy if their doc does not know what is wrong with them and this test almost always can tell what is going on. please consider it, it just mightbe the answer you need
|
| Posted 11/8/08 12:20 AM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
I have been checked for Celiac's and the doc said "no, it's definitely not that". Thanks so much for continuing to write back. I do appreciate the insight and support.
Also, to the pp who works at the GI office....thank you for sharing your volume of experience with the tests. It's comforting to hear that none were obstructed. I have to say that the instruction sheet that they gave me was very intimidating. I understand informed consent...but without any symptoms, I was having a hard time going through with it. I am going to reconsider. Thank you.
|
| Posted 11/8/08 6:32 PM |
| |
|
maiden
Whoa!
Member since 5/08 1814 total posts
Name:
T
|
Re: IBD-Chron's....
Posted by siffleuse319
what are your symptoms?
I don't think I have any. I am very "regular" with no pain or diahrrea...not even in phases. I do have some pre-BM cramping (TMI..sorry), but it is quickly alleviated. I also have some spasms, every now and again. But that's more consistent with IBS I think. I get canker sores in my mouth a few times a year too. I heard that this could be Chron's related because it's in the GI tract. And, I have a slew of food and drug allergies, so it's obvious that my immune system is confused as it is. I really don't think I have any Chron's symptoms, but my doc said that I could have it without being symptomatic
Hmmm your symptoms seem very nonspecific, so I wonder why he is coming up with Crohn's.
|
| Posted 11/9/08 3:45 PM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
so you have mouth sores..anything else?
Are they problematic?
I'm wondering why they are putting you through so many tests.
|
| Posted 11/10/08 10:17 AM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
so you have mouth sores..anything else?
no...not that I'm aware of. Other than the inflammation in my small bowel, I don't know why they are coming up with Chron's. That's why I originally posted...I wanted to try to determine that too. My doc did say that if this was 3 years ago he would tell me that I didn't have it and send me home with no diagnosis. BUT...since the capsule endoscopy exists, he said it can't hurt. I may diagnose a mild case of Chron's if it's there. I'm still not sure what to do.
|
| Posted 11/11/08 7:38 PM |
| |
|
maiden
Whoa!
Member since 5/08 1814 total posts
Name:
T
|
Re: IBD-Chron's....
Posted by siffleuse319
so you have mouth sores..anything else?
no...not that I'm aware of. Other than the inflammation in my small bowel, I don't know why they are coming up with Chron's. That's why I originally posted...I wanted to try to determine that too. My doc did say that if this was 3 years ago he would tell me that I didn't have it and send me home with no diagnosis. BUT...since the capsule endoscopy exists, he said it can't hurt. I may diagnose a mild case of Chron's if it's there. I'm still not sure what to do.
If i am not mistaken, in some cases, if you try to change your diet, Crohn's can be controlled. Why don't you look into this and see if diet change helps. Personally, this is only my opinion, but I prefer as little medical intervention as possible and it seems that your symptoms are so nonspecific that you might want to try some other things, like diet change, before doing any type of medical tests that have risks.
Good luck.
|
| Posted 11/11/08 10:02 PM |
| |
|
Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
|
Re: IBD-Chron's....
so my question is, if you are pretty much non-symptomatic, if they do find crohns at all, is he going to medicate you? I would say probably not with mild disease like that.
So I kind of agree that taking the test won't change much.
Diet can help lessen symptoms as well as stress control, but if you aren't realy having quality of life symptoms then I think it may be over the top.
|
| Posted 11/11/08 10:05 PM |
| |
|
siffleuse319
LIF Infant
Member since 8/08 189 total posts
Name:
|
Re: IBD-Chron's....
Thank you both so much for keeping up with this thread. I appreciate your insights. I'll update if I decide to get the test. For now, I can't really get another sick day from work without them thinking that I'm useless. So, maybe after the holidays, if I still feel pulled to uncertainty, I'll just have the test and be done with it. AAAHHHH...I'm so unsure I don't even like saying as much as that. Anyway, thank you.
|
| Posted 11/12/08 7:02 AM |
| |
|
julz33
i run for bacon
Member since 5/05 20584 total posts
Name:
julz
|
Re: IBD-Chron's....
I have IBS - my father has ulcerative colitis so I have been through all the testing b/c of that...
I can control my IBS through diet - try this website http://www.helpforibs.com/diet/ , it may help with your symptoms.
|
| Posted 11/12/08 1:19 PM |
| |
|
