im very confused!!!

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Peppertree
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Date Joined Sep 2005
Total Posts : 116
   Posted 1/19/2006 3:00 PM (GMT -7)   
 I was reading through some material on IBS and saw that having accidents during the night is not a common symptom for ibs. I dont know if this is true or not, because, mine has woke me up out of a sound sleep at night, and i had gone. Now, ive had stool tests of every kind done. Ive had blood tests of every kind done. Ive had a colonscopy done, and the doc took biopsy of my colon. Nothing was there that showed anything other than normal.  Maybe doctors should ask people with diarreha promience if they have accidents at night?? My doctor didnt ask me, i told him. Also, they dont weight loss to be a symptom of IBS either. Well, there wrong on that one with me. Cause i lost   lot of weight. Weight i didnt need to lose. So now i dont know what to think confused

Ides
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   Posted 1/19/2006 3:58 PM (GMT -7)   
Peppertree, I read a couple of your other posts near this one and don't know a lot of your history, but I have some comments/questions.

Why was Entocort prescribed to you? Was the GI seeing if you improved while on it? Often when people have suspected IBD by history and negative tests, a trial of Entocort is given. If the person responds to it, then further testing is done.

You are correct, being awakened needing to have a BM is not usual in IBS. Neither is weight loss a feature of IBS.

Have you had any of the following tests: small bowel follow through, CT scan, capsule endoscopy?

I co-moderate the Crohn's forum and have a fair amount of experience with the diagnostic process for IBD. I'll look for your answer. --Ides
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Keriamon
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   Posted 1/19/2006 4:09 PM (GMT -7)   
Well there are too many people here who have had problems in the middle of the night for you to be abnormal.  :-)  It may not be a commonly-listed side affect, but it clearly happens to some people.  After all, this is such a widely varying condition, caused by who knows how many different issues (bad bacteria, no gall bladder, dysfuctionality, etc.) that they can't possibly list all the potential symptoms.  I think they probably just list the most common. 
 
As for weight loss, please bear with me while I split hairs.  IBS doesn't cause you to lose weight.  That it may cause you to feel like not eating which causes you to lose weight is a secondary problem.  Many people with IBS manage to eat normally and maintain or even gain weight.  Of course some people hurt so bad it turns them off food and it is when you stop eating that makes you lose weight.  Were you to be able to eat again, you would probably gain your weight back.
 
Also poor digestion and diarrhea will cause you to not fully absorb your food, which is similar to not eating.  This may be a factor for weight loss for people with IBS-D, but not for people with IBS-C and probably not for most people who alternate.  I would even hazard to guess that people with IBS-C don't generally avoid food and probably don't lose weight at all.  The people who most avoid food are those who know it may give them diarrhea later. 
 
So not only do you have to describe a condition with many different causes, you also have to list symptoms for two totally opposite reactions.  I daresay they not only try to list the most common symptoms but those symptoms which are most likely to be shared by both D and C (and A). 

Peppertree
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Date Joined Sep 2005
Total Posts : 116
   Posted 1/19/2006 4:17 PM (GMT -7)   

Ides,

I was given stool tests, blood tests and endoscopy in 2002 because of so much diarreha. All the test came out negative, except when he took a biopsy of my colon durning the endoscopy, he said it showed microscopic colitis, put me on 12 asacol tablets a day for a month. Everything went away and didnt have another problem till September this year. This was after being under great stress with mother in law having cancer, being hospitalized 2 months, being there daily, all day, and into the night. Not eating, or eating very little. She passed away august 10 2005 and September 1, i started with constant diarreha, and it was like that for 3 weeks before i contacted my Gastro doc again. Went in, and he talked to me in length about what was going on, at that time, i was dehydrated and had lost the weight. He, told to give him stool samples, and he did, 12 different tests on those. All came back negative including c-diff, parasite etc. He then did blood tests they came back okay.  He said, they had been having good luck with patients on entocort ec with IBS-D. So thats why he was putting me on it. And it did work, first pill i took, the diarreha stopped. And didnt have anymore till, January 2006.  No, i havent had an endoscopy done. im56yr old female and he said he did the colonscopy both small and large bowl. I have only had one incident this time of being awakened in the night with a bowel movement. And can go several days without diarrea, but when i do, its like not formed but watery.  just brown water. I cant afford more tests right now, i have no insurance. And cant get insurance. So, thats my dilema i guess. sad  

im trying to make it without the entocort ec, although i do have some.  I do have bloating, and gas and rumbling of my stomach alot.


Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 1/19/2006 4:26 PM (GMT -7)   
Keri,
You are right about that. When this hits, im not in the least bit hungry. Makes me sick to even think about eating. Also, i forgot to add that when i had new false teeth done in september of 2004, and had to have all my teeth pulled, which took me a long time to learn to eat again. When this happened with my mother in law, i was supposed to go back and get my new teeth aligned, but didnt because she was so ill with cancer in the hospital. So, instead of going in march, i ended up going in September. So all that time, i really couldnt eat anything like meat or anything chewy or hard. Which limited my choices, because my teeth were so large. I have gained some now, ive gained back 6pds. so i now weight 100 pds. im making myself eat small portions about 4 or 5 times a day. thanks for you imput on the symptoms, cause ive read several people in here who also woke up at  night, with urgency and have lost weight. IM very hyper, and can lose weight  just being stressed, and when im stressed i dont eat either, so its a double edged sword. , i appreciate you answers though :-)

Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 1/19/2006 5:00 PM (GMT -7)   
So you do have a diagnosis - microscopic colitis. It is a real condition found predominately in middle-aged and elderly people, more women than men. The medications your doctor has prescribed are ones commonly used in treating MC.

Stress is a common aggrevator of IBS and IBD. It appears stressful events set off your MC. Since you have had good luck getting the symptoms to abate using the medications the doctor prescribed, why are you not taking any now? I guess I am confused as to why you are confused about your diagnosis. Sorry that I misunderstood your situaton.
CD, Ankylosing Spondylitis, connective tissue disease,
asthma, PAD, peripheral neuropathy
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m&ms
Regular Member


Date Joined Oct 2005
Total Posts : 51
   Posted 1/19/2006 7:29 PM (GMT -7)   
Ides is right. If you are diagnosed with Microscopic Colitis it is like being diagnosed with crohn's or UC - not IBS. You have a definite answer to your recurring diarrhea, and it has everything to do with the microscopic colitis. You should read as much as you can about it so that you can learn how to best get it under control. When I was trying to get a definite answer to my recurring diarhhea I thought for sure it had to be microscopic colitis because both colonoscopies showed normal bowel. My main problem ended up being C-Difficle Toxin A, and I still have recurring diarrhea about every three weeks~ but not the kind that wake me up. When the C-dif was bad it would wake me up with cramps so bad I had to take a sleeping pill to get thru the night!

Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 1/19/2006 7:53 PM (GMT -7)   

Okay,

In 2002 yes, he diagnosed me with MC, my problem is when i went back this time, he said it was IBS-D. Now do you understand why im so confused???? I guess thats what im trying ask,because in 2005 he said it is IBS-D


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 1/19/2006 8:36 PM (GMT -7)   
Then I think you have two possible options. 1) Ask your current GI why he says you now have IBS and not microscopic colitis. 2) Take copies of every single test and lab to another GI for a second opinion.

I understand you are without insurance and that option #2 might not be possible at this time. But GI #1 has prescribed medications for the microscopic colitis and they are working if you take them. So the next time you see the GI ask him if he considers the microscopic colitis cured and that is why he is now saying it is IBS.
CD, Ankylosing Spondylitis, connective tissue disease,
asthma, PAD, peripheral neuropathy
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Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 1/19/2006 8:55 PM (GMT -7)   

Ides,

Thanks, thats a good idea, im calling him monday, to get the results of my last blood tests. The one he took when he gave me the entocort, we of everything, CBC, Liver, Thyroid and Anemia. They all came back fine. So, one week ago when he refilled my Entocort ec, i had to have another blood test this time, just liver enzymes. Havent heard a word, so im calling him MOnday Morning, and fine out WHAT im being treated for!!!! Thanks so much ALLLL of YOU!!!! smurf


Keriamon
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Date Joined Jun 2005
Total Posts : 2976
   Posted 1/20/2006 7:17 AM (GMT -7)   
So what is microscopic colitis? That's one I haven't run across before.

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 1/20/2006 12:13 PM (GMT -7)   
Microscopic colitis is a more rare form of IBD that causes changes in the gut that are only visible on the microscopic level, which is one of the reasons they take biopsies during scopes.  It can cause extremely bad diarrhea that often wakes people at night, in addition to weight loss.  Peppertree, if they found it during one of your scopes, this is your answer.  Are you still taking the Entocort?

Peppertree
Regular Member


Date Joined Sep 2005
Total Posts : 116
   Posted 1/20/2006 12:31 PM (GMT -7)   

Sarita,

No, i took an 8 week course of it, and took my last pill, december 14,2005. But January 2, 2006 i started having diarreha again. So called my gastro doc, and he refilled it again, taking 1-3mg pill a day for another 30 days, also i had to go and get a blood test again for liver enzymes routine, he said.  I took 3 of the pills and then stopped!! It stopped the diarreha, for several days, and ive been doing other things to try and control the diarreha now without the pills BECAUSE entocort ec is NOT a maintance medicine.  But for sure, im calling my Gasto doc MONDAY morning to find out, if he it treating me for microscopic colitis or IBS, becaues he told me IBS this second time. IN 2002 when i had the scope down, he took biopsises and said it came back microscopic colitis.  I took asacol then, iguess becuase entocort wasnt around yet? i dont really know, but i know when i went in this time,, he called it ibs


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 1/20/2006 12:48 PM (GMT -7)   
You might want to sniff around on the Crohn's board, there are tons of people there who are on Entocort and might be able to give you some good info about how long it is usually used, etc. 
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