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10-17-2011, 06:48 AM   #1
ellipse22
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IBS Or Something Else - Still Undiagnosed!

After my scope and almost 2 months of Ammi I am still having episodes. Even after having full U/S (including internal) to get some answers on my LRQ pain - everything was normal - I have done more research and I am beginning to think that I have Endometriosis.

Interestingly, Endo mimics IBS symptoms. This is what my GI diagnosed me with since my scope was clear and I don't seem to have "all" of the Crohn's symptoms. But after 2 days of hell in the bathroom, not sleeping or eating I now have my period. And the LRQ pain has not gone away!

My husband was the first to try to tell me that there was something else going on as I tend to have episodes either just before or immediately after my period.

Has anyone here thought that they have IBD or IBS symptoms and you are getting negative results? Ladies, have you considered Endo?

Just curious if anyone here has had any further tests done to rule Endo out!
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DIAGNOSED WITH IBS but STILL GOING FOR TESTS
Symptoms:
Diahhrea/Constipation
Abdmonial Pain/Bloating
Difficulty Eating
Weight Loss/Gain
Back Pain
Fatigue
B12 Deficient & Low Iron
Stabbing Pains - LRQ Pain
Groin Pain

Meds:
B12
10-17-2011, 08:06 AM   #2
stratford
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I was told i had IBS 15 years after i was told i had Crohn's.(Had hemi colectomy & 1 fistulectomy.When i could not tolerate the drugs my Dr told me i had to take (Immunosuppression) he decided to tell me i had IBS!
I got another opinion - had capsule endoscopy - suprise,suprise - active Crohn's in the small bowel.
Never give up until you get the required answers - my Dr was 100% wrong.
10-17-2011, 08:25 AM   #3
jenny2
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ellipse hi, i also had every test colonscopy, small bowell ft, endoscope and ct scan of abdomen and nothing has been found. i have alot of the same problems you do and i think that the docs are going to tell me ibs also. i go back to gastro next monday. what are you taking for the diarrhea? did you lose alot of weight? I am taking immodium for diarrhea and it works half the time.
10-17-2011, 08:36 AM   #4
ellipse22
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ellipse hi, i also had every test colonscopy, small bowell ft, endoscope and ct scan of abdomen and nothing has been found. i have alot of the same problems you do and i think that the docs are going to tell me ibs also. i go back to gastro next monday. what are you taking for the diarrhea? did you lose alot of weight? I am taking immodium for diarrhea and it works half the time.
Hi Jenny!

I only have D when I have episodes. I don't usually take anything for it..other than drinking gatorade! I am on 10mg of Ammi and my GI gave me Dicetel to take when I'm having an episode. I did take it and I didn't feel as if it had any affect. I mostly suffer from C and have yet to take anything to help me as I don't want to have to resort to laxatives on a continuous basis. I guess I'm sick of just treating symptoms and not treating the actual problem.

Do you suffer from LRQ pain as well? Have you had a CT or U/S's done? My husband is convinced there is something happening on the outside of my intestines - that can't be seen with a scope etc.
10-17-2011, 08:44 AM   #5
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In my research (I have thought endo might be a possibility for me as well), I believe I read that the only way to be dxed with endo is via laparoscopy. Also, treatment usually involves hormones. Are you on bcp or another type of hormonal birth control? Did your GYN order the ultrasounds or was that your GP?
10-17-2011, 08:59 AM   #6
jenny2
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i do suffer from left sided pain and mostly have diarrhea, it started off with c but then i was taking mirlax and it has turned into d all the time and i dont take mirlax anymore. i have had a ct scan of abdomen what is u/s? my stomach sounds like a coffee maker all the time after i eat foods, real loud sounds. i know how you feel with all these tests and no answers. i would like to find out what is wrong with me also and not just the symptoms. i cant gain any weight with diarrhea but i have managed to maintain my weight of 139 by drinking insure. i lost over 25 pounds since july.
10-17-2011, 09:29 AM   #7
ellipse22
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In my research (I have thought endo might be a possibility for me as well), I believe I read that the only way to be dxed with endo is via laparoscopy. Also, treatment usually involves hormones. Are you on bcp or another type of hormonal birth control? Did your GYN order the ultrasounds or was that your GP?
I am not on any type oral contraceptives. I had a tubal ligation almost 10 years ago. Since then my periods have been heavy. My GP is the one who ordered the u/s's. Back in July they thought the LRQ pain was appendicitis. It wasn't. So the U/S's were to check all organs and the internal was to check my ovaries. I got those results last week that stated everything was fine. It was the nurse practioner that I saw and she suggested the pain was due to a pulled muscle - for 4 months?!?! Anyway, she kinda fluffed me off.

I have an appt to see the GP on Thursday.
10-17-2011, 09:32 AM   #8
ellipse22
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i do suffer from left sided pain and mostly have diarrhea, it started off with c but then i was taking mirlax and it has turned into d all the time and i dont take mirlax anymore. i have had a ct scan of abdomen what is u/s? my stomach sounds like a coffee maker all the time after i eat foods, real loud sounds. i know how you feel with all these tests and no answers. i would like to find out what is wrong with me also and not just the symptoms. i cant gain any weight with diarrhea but i have managed to maintain my weight of 139 by drinking insure. i lost over 25 pounds since july.
That is crazy Jenny! CT is similar to an ultrasound but a much better picture. I haven't had a CT. It sounds like you are having some similar pain but your symptoms may be a bit worse than mine as far the D is concerned. I don't get noises when I eat. I do get bloating/gas but I find that GasX type OTC meds don't work.
10-17-2011, 09:34 AM   #9
ellipse22
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In my research (I have thought endo might be a possibility for me as well), I believe I read that the only way to be dxed with endo is via laparoscopy. Also, treatment usually involves hormones. Are you on bcp or another type of hormonal birth control? Did your GYN order the ultrasounds or was that your GP?
From what I was reading the best way to diagnose is via Lap as well. So even though I have had the internal u/s and it showed nothing..it might not. I guess I am just somewhat hopeful that it isn't IBD or IBS. I hate self diagnosing but apparently no one else can diagnose me so I may as well!
10-17-2011, 09:54 AM   #10
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I have posted this link before - I think it is very interesting, especially the part on "gastrointestinal endometriosis."

Yeah, my GYN ordered a pelvic U/S which showed nothing except a retroflexed uterus. I'm not sure if that's the right word, but my uterus is tipped backward, instead of forward like normal (it wasn't like this previously). Maybe if you have endo very severely U/S can pick it up, but my GYN told me it's a pathological diagnosis typically. My main symptom that made him think it was possibly endo was the pain I experience with ovulation, but it's not really bad enough at this point to warrant surgery. I can't take hormones anymore, so basically I just pop some Advil when it starts and that does help a lot.

Have you discussed this with a GYN? If going the GI route doesn't provide answers, then it makes sense to take your symptoms elsewhere and see if another approach yields some answers.
10-17-2011, 09:55 AM   #11
Mayflower537
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I am not on any type oral contraceptives. I had a tubal ligation almost 10 years ago. Since then my periods have been heavy. My GP is the one who ordered the u/s's. Back in July they thought the LRQ pain was appendicitis. It wasn't. So the U/S's were to check all organs and the internal was to check my ovaries. I got those results last week that stated everything was fine. It was the nurse practioner that I saw and she suggested the pain was due to a pulled muscle - for 4 months?!?! Anyway, she kinda fluffed me off.

I have an appt to see the GP on Thursday.
Sorry, I didn't see this when I replied a minute ago. I would get a referral to a GYN, if you don't have one already to explore the endo possibility. They would definitely have more experience than a GP with this type of thing.
10-17-2011, 10:10 AM   #12
ellipse22
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I think that the main reason (other than normal scope etc) that I am suspecting Endo is because I have "episodes" prior to my period and the odd time after. I have constant abdominal pain, LRQ pain, bloating etc. At this point I feel I have to keep seeking answers. As my husband says "What if it's something on the outside that can't be seen with a scope"
10-17-2011, 10:13 AM   #13
ellipse22
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Oh and I can't find any food triggers so I'm somewhat neglectful to suggest it's IBS or IBD. Odd!
10-17-2011, 12:29 PM   #14
Mayflower537
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I never found any food triggers either. Anytime I'd have an episode, I could a lot of times remember what I thought was the trigger, and then I'd test the theory again, and nothing would happen. Other than really fatty foods, I haven't been able to find anything that sets me off every time. And even the fatty foods - sometimes I can handle that. I've always thought my episodes weren't regular enough to be IBS either. It seems like people with IBS are sicker than I am.
10-17-2011, 12:40 PM   #15
ellipse22
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I never found any food triggers either. Anytime I'd have an episode, I could a lot of times remember what I thought was the trigger, and then I'd test the theory again, and nothing would happen. Other than really fatty foods, I haven't been able to find anything that sets me off every time. And even the fatty foods - sometimes I can handle that. I've always thought my episodes weren't regular enough to be IBS either. It seems like people with IBS are sicker than I am.
So what is your diagnosis or are you still waiting? Have you had a scope etc.? I guess I am curious as to what your story is.

I have an appt on Thursday and I will be asking for a referral. I guess I wouldn't have come to this as a possibility if the Ammi was working and if I was episode free. With the way doctors are these days (my own opinion) we have to do the research ourselves because it's the only way to get things going.

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10-17-2011, 12:40 PM   #16
ellipse22
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Oh and I'm not sure if you were trying to post a link but I can't see it...
10-17-2011, 01:21 PM   #17
jenny2
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i dont think i have any food triggers either, dont matter what i eat it is diarrhea. i found out results of ct scan and all normal. i know the doc is gonna tell me ibs on monday. i hope they have some pills to control this problem. did they tell you ibs ellipse? if so why didnt they put you on other pills beside the ammi? i have taken ammi before but i just could not get out of bed in the morning when i took that pill. i hope you get some answers soon..
10-17-2011, 01:28 PM   #18
ellipse22
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i dont think i have any food triggers either, dont matter what i eat it is diarrhea. i found out results of ct scan and all normal. i know the doc is gonna tell me ibs on monday. i hope they have some pills to control this problem. did they tell you ibs ellipse? if so why didnt they put you on other pills beside the ammi? i have taken ammi before but i just could not get out of bed in the morning when i took that pill. i hope you get some answers soon..
The GI diagnosed me with IBS after my scope came back normal. He then gave me Ammi. I too have had difficulty with Ammi and thankfully I was off work at the time so I could adjust to feeling sleepy all the time. I am back at work now though and I still struggle. I am taking 10mg currently. He also gave me Dicetel to take when I'm having an episode to help with cramping but it didn't do anything for me.

Keep pushing for answers. IBS seem to be the easy answer for anything related to the bowels. Have you had a scope done?
10-17-2011, 03:09 PM   #19
Mayflower537
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LOL, I think I forgot the link.

http://www.endo-resolved.com/symptoms.html

Wow, where is my brain today...My story, in a nutshell, is the 3rd post on page one of the undiagnosed club. I just re-read it and I don't have much new stuff to add. I was on two rounds of Xifaxan b/c my GI said he would treat as if my symptoms were from IBS since he couldn't find Crohns. He never came out and said, "You have IBS," although I don't know what he wrote in my chart. Xifaxan can treat bacterial overgrowth, which sometimes causes IBS-type symptoms. My symptoms came back about 4 months after the first round, and since I took the second round, I've had very rare acute episodes. I can only remember one in May, and then the stray loose bowel here and there. I finished the second round of Xifaxan sometime in January, so I think that's pretty good. Whatever it did, things seem to work better than before. Until I get dramatically worse, I'll probably leave the endo thing alone. It's not so broken that I feel like fixing it at this point.
10-17-2011, 04:10 PM   #20
ellipse22
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Thanks for the link. I took a read and I have to say I am a little scared now. I am saving the link to discuss with the hubby when he gets home! Thanks again!!
10-17-2011, 04:17 PM   #21
Mayflower537
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No problem. I hope you find someone who can help you, no matter what your issues are actually from.
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