Are there any doctors out there who don't make you feel like you're crazy?
#327132 - 03/24/08 07:56 PM
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First an update: I went through another colonscopy to determine whether I did in fact have microscopic colitis. The doctor took a ton of biopsies and all showed no sign of inflammation. I must have had a false positive or else a temporary inflammation that healed on its own.
We decided to move forward with lotronex. I promised my doctor I wouldn't start taking lotronex until I heard back from him re: my intestinal xrays. I am the first patient he's rx'd it to since it was pulled off the market and I think he's hypersensitive to the bad rap the drug got. He xrayed me as a final precautionary measure to ensure I am not constipated before I began taking it. I assured him I have zero constipation issues. I purposely have to stop myself up with handfuls of immodium or lomotil to just get my gut to calm down and lead a relatively normal life.
For some reason he is hung on on this idea that I may just be constipated and that is why I have diarrhea..essentially it's the only thing that can make it around the stool in my colon. Valid concern, but I have suffered from the hallmark IBS symptoms for 8 years now and nothing has ever helped me. I seriously went through the roof because he called me tonight and left a message saying the xrays show there is a lot of stool in my intestines and he wants me to try a laxative therapy and conduct more testing? What other testing is left? I mean seriously!!
I am so incredibly irate, frustrated...at my wit's end over all this! I have been through mountains of testing in the last couple of months, did another colonoscopy, tried more treatments to no avail, suffered emotional exhaustion, had to deal with this and my job, AND he even already gave me the rx for lotronex. How can he do so and then say, oh sorry I think you're really constipated. I don't even know what constipation would feel like! I've never had issues with going!
I refuse to try a laxative! I can just imagine the amount of pain and misery I'd be in! I feel so miserable I can't even make my own doctor understand that I have to purposely "stop myself up" just to leave the house everyday, to get my gut to calm down, to just be able to work and socialize. Yes, I probably do have more stool than normal in my bowels, but it's because I have to go through this cycle of cramming anti-diarrheals down my throat in order to function. No matter how much I take, I still go at least 3-4 times every morning. And my BMs are all accompanied by pain, urgency, cramping, etc.
Has anyone else had to fight this in order to get the doctor to believe you? Thanks for letting me vent. I just want my life back. I just want someone to believe that this is not all in my head, that I'm not exaggerating, that there are people out there like me who can eat the healthiest, safest diet and do everything else right and still suffer intensely from this disease. I am tired of justifying it to everyone and even to myself.
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Oh sweetie, I am so sorry, how utterly frustrating!!! I have IBS as well as a host of other illnesses that I struggled for years to get dx so I do understand the frustrating and desperation.
I am not sure what advice to give you on the actual medical part. If you are going 3-4 times each morning with cramping and urgency and pain, I would be hesitant as well to try a laxative. I assume you are already taking some sort of fiber? Have you tried a pro biotic?
Maybe its time to get copies of the tests you have already had and get another opinion. I know you are sick of tests and doctors but hang in there and take it one day at a time. Know that you are doing everything you can to try and get well and some things we just can not control and have to keep seeking the answers. You are NOT crazy and its not in your head. I was told that many times along with I was just fat and depressed before i was dx with a chronic, serious illness. It can be a long journey but you are strong and you can do it! Love and hugs.
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Taking it one day at a time.....
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First, how are you feeling today, Amanda? That is good news that you don't have micrscopic colitis!
As far as doctors go, I stopped going to any GI. Waste of money and made me feel like I was just crazy and stressed. No advice was ever offered.
Quote:
I just want someone to believe that this is not all in my head, that I'm not exaggerating, that there are people out there like me who can eat the healthiest, safest diet and do everything else right and still suffer intensely from this disease. I am tired of justifying it to everyone and even to myself.
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IBS-C with pain and bloat
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update
#327242 - 03/26/08 12:38 PM
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Thanks for your support guys. I talked to the doctor again last night and put my foot down on the laxatives. Apparently, he didn't hear me/ or I didn't emphasize enough during our last visit that I was still quaffing 4-6 lomotil a day just to get out the door. Now that he knows that, he wants me to try lotronex.
It's a never ending battle! Yes, I take Align, peppermint caps, and other IBS meds as needed. I do not take SFS. Every time I have tried my body just won't tolerate it. It's unfortunate.
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Good for you! Quote:
Apparently, he didn't hear me/ or I didn't emphasize enough during our last visit that I was still quaffing 4-6 lomotil a day just to get out the door. Now that he knows that, he wants me to try lotronex.
Or, he just doesn't think people with IBS are worth listening to with all your attention? What if you had cancer? Would he had made some careless decision? Although, it does sound like he was basing his decision on the fact that your scan showed lots of stool in your system. How does he explain this?? Are you having D every day?
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IBS-C with pain and bloat
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I don't see to be helped by SFS either. What effect does it have on you? Have you ever tried digestive enzymes?
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IBS-C with pain and bloat
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"For some reason he is hung on on this idea that I may just be constipated and that is why I have diarrhea..essentially it's the only thing that can make it around the stool in my colon. Valid concern, but I have suffered from the hallmark IBS symptoms for 8 years now and nothing has ever helped me. I seriously went through the roof because he called me tonight and left a message saying the xrays show there is a lot of stool in my intestines and he wants me to try a laxative therapy and conduct more testing? What other testing is left? I mean seriously!!"
I had a GI tell me this also. In my case I believe it to be true as I alternate. He had hospitalized me because he thought I had a bowel obstruction. He was so nice and concerned at first. Then when he decided it was "just IBS" he went nuts. He really acted like a lunatic. Pulled me off painkillers and insisted I be discharged when I completed the 24 hour urine collection he had ordered. I was discharged just before midnight and my DH had to pick me up. Oh, he also found I had a hiatal hernia, gastritis, esphogeal reflux and a rectal prolapse for which he had a general surgeon come in for a consult. But then he says "It's just irritable bowel!" The nurses reassured me that I did nothing wrong. That he was very moody and if I needed or wanted to spend the rest of the night in the hospital they would call him. I was too frightened to stay. I left with follow up appointments with the surgeon and the GI. The surgeon asked me why I was there as he said he told me and the GI he didn't think I needed surgery. When I went back to the nuts GI he said I definitely needed surgery and I should go see Dr. Beart at USC Medical Center. But he didn't do a referral or anything. Just handed me a bunch of fiber supplements. I never went back. I saw another GI who was very nice, didn't think I needed surgery, ran a bunch of tests and said he didn't know what was wrong with me. Not only do these docs think I am a nut case, but they think I am a drug addict as well because I will take painkillers when the pain overwhelms me. Oh, and the GI said diet has nothing to do with IBS. There is no scientific proof.
If I hadn't found this web site I think I would have gone nuts. So, hang in there. We have all heard ridiculous statements and advice from doctors. Not too long ago people with multiple sclerosis or lupus were thought to be hysterical and there was no such disease. I think the philosophy of many docs is that if you can't figure it out and you can't treat it successfully than it must be the patient's fault. I am so sorry you are having such a confusing and frustrating experience with your doctor.
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Re: update
#327279 - 03/26/08 04:08 PM
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Susie2
Reged: 08/07/06
Posts: 158
Loc: Pomona California
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Glad to hear your doc finally listened to you. Hope you feel better.
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To answer your questions:
I have tried digestive enzymes and didn't see any appreciable help from them.
SFS made my symptoms go crazy, even at very low doses. I could never work up past a tsp a day, which is not a dose that can really do much of anything. My poor intestines just writhed, spasmed and cramped and I had horrendous D. These all cleared up when I cut the fiber back out. I tried Citrucel, Metamucil and Acacia...in fact, didn't I send you my practically full Acacia can? 
I think my doc is being overly apprehensive one, because he is an uber thorough doc, which has been actually very good. I have never had another GI who knew all the tests to run and would do them without me having to argue my case. Because of him, I know 100% for sure I have true IBS-D.
On the downside, he's a little scared about me taking this med since he hasn't prescribed it since it got all that bad publicity back in 02. I think he listens, but perhaps missed the fact I was still quaffing lomotil. As a stressed out professional with tons of clients myself, I have to understand how small oversights are possible, even though they're never really justifiable to the client/patient.
Yes, I have D practically every day. For me, D is not a ton of liquid, although it definitely can be at times. It is most often just very loose fecal matter that comes out in large volume, always precipitated by urgency, pain and cramping. I go several times every morning...on a good morning. If I didn't take lomotil every day, I don't know that I'd stop going and I"m sure the liquid would be more common.
Interesting test my doc did: I had to collect my stool for 48 hrs and he weighed it. A normal person produces about 250g of poo in 48 hours. My poo weighed 140g. This is indicative of functional diarrhea. While the volume is a lot, the weight is severely below normal because of the high liquid content. That's how we know for sure I have D.
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