Called GI this morning!!

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margie

margie

Joined
Feb 21, 2011
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369
Well, after about 5 trips to the bathroom for Loose stool that very quickly became Diarrhea and all in about a 2-3 hr period. I went to urinate came out of the bathroom, sat down for a few minutes and in getting up to go get something from the other room, the fecal incontinence came. I stood up and started to walk and it just poured out of me, with no cramping or warning at all.

I vomit every time that I eat, diarrhea every day, cramping, distended abdomen, headaches, nausea, and I just plain ache all over my body. I am so sick of living like this.

I immediately called my GI doctor that I swore I would not go back to, but what choice do I really have here. I told the receptionist what is going on after starting the Bentyl last Thursday and the affects that it is having on me. She said that he couldn't be seen today because of a full schedule of endoscopies, but for me to come to see him tomorrow afternoon. So I had to cancel 2 other appointments I had just to be able to see him. Otherwise I wouldn't be able to until sometime next week.

I have always been such a strong woman and these days I feel very weak. I feel like a prisoner in my own home, because now I am so uncomfortable with even attempting to go outside the walls. I don't even feel very comfortable even when a toilet is only about 50ft away from me. I couldn't even make it to one in my own home.

I am a fighter, but I don't know how much longer I can continue fighting before I get the right kind of treatment for all of this. If all of the tests came back negative, then why am I having these problems. I don't understand when the one test clearly showed that there is some sort of problem even if it is minute.

I am just sick and tired of being sick and tired
 
If it's not in your gastro intestinal tract, have they looked at endometriosis causing some of this? I mean with all the test coming up negative for bowel problems? Something is clearly going on in your body.

Another thing, allergy tests. Also, tests for bacteria, or c diff, or clostridium prefingens? CP wont show ulcerations necessarily, they cling to the wall of the gut, multiply and reinfect. (gross I know)

Misty
 
Have you been looking or got a referral to another GI? You can still do that while seeing this one that you don't like. Your sig says that you were diagnosed with Crohn's already so I don't understand why another GI would take away that diagnosis even if you were in remission at some point. Medication for IBS is not going to help you if you have CD. Bentyl can cause upset stomach and vomiting but it says nothing about diarrhea, only constipation. Sounds like you may need a colonoscpy to see what's happening in the colon to try and see if you can find a reason for the incontinence. I've never had that problem myself but I think a few people on the forum have dealt with that. Usually there's some sort of warning so that's why I'd get the lower end checked out to make sure things are working the way they are supposed to. Hopefully this GI doc, even if you don't like him will be willing to do something for you.

It's completely normal to have that sick and tired feeling especially when you aren't getting the treatment you deserve. Don't take no for an answer, cry if you have to but make them feel human again so they will help you. Be firm and stand your ground and bring a list of your symptoms and questions so you don't forget anything.
 
Crabby, I think poor Margie has had every test imaginable, and has the medical bills to prove it.
Misty
 
Aw Margie
This is just awful!
I don't know what else to suggest, Crabby said it all.
But don't leave that GI's room until you've been listened to, taken seriously, and given the appropriate med regime.
I mean it, DO NOT leave it.
I wish you lotsa luck with this and fingers crossed your next post after the appt has some positive answers.
xxxxx
 
Thank you everyone for all of your support. I don't know where to turn now, if he blows me off again tomorrow.

As far as the tests go, Misty is right, I already had a colonoscopy, endoscopy, capsule endoscopy, abdominal x-rays, pelvic ultrasound, MRI, small bowel series, and the list goes on. The capsule endoscopy stated that I had yellow colored bile retained and so the capsule endoscopy was unclear, so hence the small bowel series that supposedly came back negative.

As far as taking a list of my symptoms, I did that with the GI doctor last time I had gone in before the capsule endoscopy. The GI comment to me was "People that give me a list this long are usually considered crazy". Those were his exact words.

I am frustrated, tired, disgusted, and just plain feel like this is the way it is going to be for me, because none of them want to believe that there is definitely something wrong. I honestly expect him to tell me to go see a Psychiatrist like it is now in my head.
 
Last edited:
Dear Margie, sending strength and solidarity. Hope the doctor listens and takes you seriously, and is able to help. Big hug.
 
Thank you nomad and everyone. I have my appointment this afternoon around 1:00, I sure hope that something comes out of this appointment without his condescending attitude. Time will tell. All I know is that this med that he has me on isn't doing anything for me.
 
Hi Margie,
Good luck with your doc later. Can I just ask (maybe I've missed it by not being on here recently), but why when you already have a Crohn's dx, won't they give you the appropriate treatment?
 
Andrea,
I have absolutely no idea why this doctor is not treating me with meds for Crohn's especially since he is the one that Diagnosed me with it years ago. All that I know is that I am seriously tired of not being treated and soiling my undies. This is horrible. He put me on Bentyl and that was last Thursday and since have had problems with incontinence. Yesterday went to go get something and no sooner than I got up took a couple of steps, the poop just poured out of me while trying to get to the bathroom in time. I feel like a prisoner in my own home, I don't feel comfortable or safe going out at all now because of the worry of accidents.
 
Much to my surprise, my GI showed concern and confusion as to what is happening with me. He still had the dry personality to the point where I had even asked him if he was being sarcastic but he was just plain confused as to what is going on. He asked where the pain was at and checked my lower back and said that it could be Sacroillitis. He also checked my abdomen and said that it was quiet and free of gas, but found exactly where the pain is as he pushed and I let him know that it did hurt.

He told me that this is just not normal, but is confused and I think is even questioning now the Crohn's Disease Diagnosis that he diagnosed me with back in 2005. Said that the pill cam was very difficult to read this time because of all of the content retained, but said that from the small bowel series, that the small bowel looked fine, that the barium didn't go through to quickly or to slowly, which with the contents being retained could be a blockage somewhere that is just not showing up on the colonoscopy, endoscopy, or the pill cam.

He feels that this is not a bug or virus of any kind and that if it was symptoms would be different than they are. My blood pressure today was quite low, lower than normal and my skin red. He told me to stop the Bentyl as it isn't doing me any good and gave me Cholestyramine for Oral Suspension which may or may not help with the Diarrhea. I had blood work today to check my Hemoglobin, cholesterol, etc. And had asked if I was ever checked for C-Dif whatever that is. He also questions the circulation in my gut and has order an Abdomen/Aorta Duplex for Mesenteric Arteries. I have to fast after 9pm tonight for that and go in tomorrow morning. He has also ordered me to have another Colonoscopy which I have to go in for next Monday.

I sure hope he can get to the bottom of all of this.
 
Misty,
He sure had an attitude adjustment since my last visit, however he still had to make the comment about the weight gain and fat around my abdomen and said that I had gained at least 20lbs. I told him it sure wasn't from eating and that it was because of all the meds for depression that I had been on and am off of right now. He said that it was good that I had stopped them for now, because it clears up the side effect symptoms from any of those meds.

Still confused though
 
Margie, I think this sounds like your most positive appt yet. Positive that the doc admitted that he doesn't know what's going on and is open to looking into other things that may be causing your problems.

C Diff is a very serious GI infection. There's lots of info on here from people who have had it, so if you do a search you can read others' experiences.

Glad things are progressing in the right direction in terms of finding some answers.

- amy
 
Glad that the appointment went well and that you're getting more tests done to figure out the cause. :)
 
1. If you have community-acquired Clostridium difficile, your doctor needs to put you on Flagyl or oral Vancomycin.

2. If you have Crohn's, then he needs to consider something other than Bentyl, since that is usually given to people with IBS (not IBD...except for cramps associated with diarrhea). He should consider Pentasa/Asacol and maybe 6-MP.

Dr. S (spouse of Crohn's sufferer)
 
I am glad that he had a change in attitude yesterday and that he is ordering more tests and trying to get to the bottom of this. He did say that I was gas free yesterday but still swollen badly.

Not sure if he even thinks it is Crohn's now, think he is doubting his diagnosis, not sure what to think here. He has now taken me off of the Bentyl and told me to take Cholestyramine for Oral Suspension for the Diarrhea until he can figure out what exactly is going on.

I had blood tests yesterday to check Hemoglobin, Cholesterol, Liver, etc. I had an Abdominal/Aorta Duplex this morning after fasting all night and this morning to check the blood flow to the gut. It was absolutely horrible, the pain was excruciating when they pushed down on my abdomen in several areas to the point of crying. I am not a baby for cryin out loud, but I felt like one this morning. It hurt soooooo bad, they said that they have never had a patient cry like that from this procedure because of the pain. Now I wait for the Colonoscopy on Monday afternoon.

I almost didn't make to a bathroom within 5 minutes of leaving the parking lot of the hospital after the test, and then ran to the bathroom again when I got home.

This is no way to live. And if one more person comments about me not loosing weight due to the pain and not wanting to eat, I swear I will kick them in the rear. I am sooooooo sick of all of this, and all of their smart a........comments. Just because I am not loosing weight doesn't mean that I don't have a problem here. Yes, I eat, if you want to call that eating, when about 1 hr after I eat I vomit or head for the toilet right away. Why I am holding the weight I have no idea.

I am so sick and tired of being sick and tired. I sure hope he comes up with answers and soon, cause I really don't know how much longer I can continue this way. Just don't even want to get out of bed anymore, because I don't want to deal with another day of all of this pain. It has been 3 months now of fighting this particular problem with the distended swollen and painful abdomen on top of the incontinence from the Diarrhea.
Don't know how much more that I can take.....seriously.
 
:hang:
Hang in there, Margie! I hope your colonoscopy on Monday give you some real answers! Keep us posted.
 
I'm also relieved to hear your GI is considering other problems. About time! Keep bugging the doctor until you get your answers!

When do you get the results back from the test this morning?
 
Hang on Margie, sounds like you are starting to make progress (bout bloody time!) and he's listening..and even better THINKING. Just a bit longer and you'll have some answers, I just know you will!

Misty
 
Yes Margie, DITTO ^

You ARE making some progress, won't be long now, all good things come to he who waits!
And you've waited bloody long enough luv!
Hang on in there Margie
xxxx
 
Thank goodness for that !!

hang in there Margie, this time next week mybe you could have decisive, accurate diagnosis that can be acted upon.

big hug
 
Thank you everyone for all of your support. I just can't thank you enough. So nice to know that I can come here and talk with all of you about all of this.

I am hanging in here, had a very bad night again last night of crying in my sleep from all of the pain that I have. I sure hope that he can figure out what is going on, if not from the blood work and the test that was done yesterday morning, than from the colonoscopy. If he comes back with negative results still from all of these tests, I just don't know anymore. I know that there is something wrong, but at the same time, I still feel that he will just tell me that this is all a mystery or in my head. I am starting to loose faith in the docs.
 
I went this afternoon for the colonoscopy. I am tired, worn out, dehydrated, blood pressure was only 97/74 and abdomen still very distended. My GI doctor was good to me this afternoon. He said that I am full of collitis and had to take several biopsies to find out what is going on. He said that he could tell that I am seriously miserable and in pain and that he definitely needs to get to the bottom of this and find out why I am so distended and have so much diarrhea all of the time. The biopsy results will not be in until middle of next week. So now, have to go through the waiting game again before any treatment.

Atleast now he realizes the pain and suffering that I am in though. Apparently even under the anesthetic they could all tell how uncomfortable I was.

Time will tell now as to the next step.
 
Glad your doctor is taking you seriously Margie. "Full of colitis" must be good to hear in a way. At least he saw SOMEthing! ;) Hope this means you're headed in the right direction to get the right treatment finally.
 
My thoughts are with you, dear Margie. It does sound like your doctor has now understood the situation, so keep the faith, he will help. Things will improve, and there will be brighter days ahead. Big hug!
 
Bless you Margie. This time I really pray they get to the bottom of it (pardon the pun). You deserve to know what is going on and to get treatment and relief for gawds sake!

Misty
 
I am so glad your doctor is taking you seriously now. I hope your biopsies will come back soon with some answers. Hang in there, Margie!!
 
At last, thank heavens for that Margie.

Haven't been on for a few days but so glad to hear that he hears you !!

Take care
 
My heart goes out to you Margie. I have had similar experiences, and it doesn't help at all when people make rude comments about weight. When will they all get it through their heads that not all Crohnies are skinny?

At least your Dr is taking you seriously now. I hope you get to the bottom of this soon.
 
Jer's Girl
Not anymore, went to see him this morning after the colonoscopy last week where he came out of it and said that I was full of colitis. This morning I go in for what I thought would be treatment and biopsy reports and end up with yet another appointment of humiliation. He said that the distention in my stomach and abdomen is all me, he said that I am overweight, out of shape and that I need to stop taking naps get out of the bed and off of my lazy a.... and start walking or exercise and that all tests were normal. I am appauled. I told him that I am not lazy because I am tired, and that it was a cruel thing to say to me. He shrugged his shoulders and said just pushing you to start exercising cuz everything is coming back normal and that now doesn't even believe his own diagnosis of years ago when he told me I have Crohns from the camera endoscopy that he did. Gave me Pentasa, Prednisone and Cholestyramine, but only for a couple of weeks because he doesn't believe that it will do any good either, cuz he feels that everything is fine and nothing more than IBS. Wants me to go next week for a gastric emptying study and come back in a couple of weeks to see him. I am not doing the test or going back, because he pretty much told me that if these come back normal to go find another doctor or go to the University of Michigan. In other words, I am wasting his time and he isn't getting enough money out of my insurance or at least that is the impression that I am getting. Not a very good way to start off my day this morning.

I have been vomiting all day today, and there has been dry blood and what seems like bile in it too.

Just don't know where to go to or who to turn to now. My options are limited due to the insurance which is state aid and most specialists will not take state aid patients.
 
Oh Margie, my heart goes out to you. This doctor does sounds absolutely awful, and if, in the end, it is about the money, even worse. I can only send my solidarity, and tell you I will be thinking of you and sending strength. Hang in there!
 
Nicole,
I hear what you are saying about the money. I am financially in so much debt now though and owe the hospitals thousands of dollars just trying to get some form of treatment. I have the state, IRS, counties, hospitals, docs and the list goes on all wanting a piece of my you know what. I can't go somewhere that doesn't accept the insurance, just can't.
 
Starting all over sounds daunting, but I think that is what you must do. Something is going on and you must get to the bottom of it. I pray you find a worthy doctor!

And chest pain is not to be messed with. If you think it is due to the meds, then I would stop. If it continues or gets worse, please go to the ER!
 
I decided to stop all meds and am not going back to the GI doc or anymore of his testing right now. Once I stopped the meds, the chestpain and heartburn stopped too. Had to have been the meds that were causing the chest pain problems. They were horrible. I have to find a new doctor that will accept my insurance before I can do anymore. This is horrible to be put right back into this position again, but I will not be humiliated by this doctor again or be treated with disrespect anymore. I know my body better than anyone or any doctor and just won't be treated like I am fat and crazy anymore. Sure hope that I can find another doctor though.
 
Margie,

There is a way to get around GI docs if you have IBD-related arthritis. You can go see a Rheumatologist. The treatments for Crohn's and IBD-related arthritis are the same...so if you find a Rheum doc that is cool...that may work better for you. That's what we're doing currently since the GI docs at my hospital are f*ckwads.

Dr. S
 
Dr. S,
Thanks, I will have to try something or find a different GI that is for sure. I thought that with you being a Dr yourself, that the docs would treat you better than that. That is horrible. Soooo sorry that you are going through this too.
 
OOPS, I am bad....had another appointment with the doctor today and ghee I wonder why I didn't go....guess might be because I was treated with such cruelty. Probably would have been respectful to cancel, but to be honest, completely forgot about the appointment anyways.

I just still to this day can't believe nor can anyone I told believe how he treated me.
 
aw Margie,

Don't give up . . . . you have got to get into his rooms and THEN have an accident!!

lots of hugs
 
Margie I know what you are going through chick. This is the exact same attitude I have been faced with for 11 years. I really don't know what it is, I think at med school doctors get it drummed into them how to make people feel like total **** about themselves. I don't know whether putting people down makes them feel powerful or something but it is absolutely sickening. I feel so angry for you I can't tell you...

For years despite horrific and very physically obvious symptoms I have been labeled an Anorexic liar and very personally attacked by doctors and GPs, I have had to go into massive debts in order to pay private for tests and get help I desperately need, because my GP and other NHS consultants blame all my problems on "mental" issues and not eating. Its total bollocks (excuse my language but I am irate at them).

You are clearly facing the same ignorant and insulting attitude, I really hope you can find someone who listens to you and cares. There are people out there who will be able to help you, but finding them is another matter. I strongly recommend you complain about this brainless pile of horse manure. You need help and treatment not bullying and intimidation like that.

Take care chick, I am really feeling for you
xxx
 
Heidi,
Thanks, and I am sorry that you have had to deal with all of the utter bs from the medical field too. I am hoping that maybe a few of these so called doctors read my book and realize that they seriously need to reconsider the way that they treat people. I am writing the sequel to the first and believe you me, a lot about the way that I have been treated by doctors will be in this second book.

I am going to write a complaint to the State Board and also to the CCFA as he is a member. Yeah, a member no less treating me in this way. I wonder what they will say to this one.
 
You've writen books? I would like to read what you have written, what are they called? I'm pretty sure someone will read it, certainly I think many people will be able to empathize on a very personal level, I don't think we're in isolation in being treated very badly.

Take care chick, big hugs :hug:
xxx
 
Heidi,
My book is in publication right now and the release will be probably mid July. Title is called Vicious Circle, which is about my life in general with dealing with Crohn's and Depression as well as just trying to live my life. I have now started on the sequel to Vicious Circle too.

I will be posting on here when the actual date will be closer to July.

Thank you for your interest in my book. I will be donating part of the profits to the CCFA for research.
 
Excellent! I am looking forward to reading that, well done you! Its about time more people talked about what really goes on behind closed doors when you have chronic conditions like IBD.

Take care chick xxx
 
The two books will have a lot of info on the treatment of Crohn's patients, what we feel and go through in our daily struggles with life. I can't wait till I get the first book in my hands. It is such a big accomplishment for me and I just hope that others can relate to the book.
 
I bet, there's a lot of people your book will help, that is a wonderful thing, you should feel very proud :).

You have a lot to be proud of, outside of writing the book. I have many friends who bow down to doctors and medical professionals just because of who they are. But You've stood up for yourself and questioned what you've heard and that takes guts. I think your book will inspire others to do the same, well done chick, thank you :) all this stuff absolutely needs to be said :kiss: xxx
 
hi margie, are you still having all the symptoms you've mentioned. If you do then You may want to do a stool sample to check for c-diff. I had 2 episodes of it, its colitis of the colon and usually goes away after treatment. You can get your family dr. to set you up for this test.
 
Well as it stands right now, I have no doc, because my general doctor pretty much doesn't even want to give me pain meds anymore for my Crohns Pain and Fibromyalgia either and gave me no suggestions for another GI doc after telling her what happened with the last one. So now I am looking for both docs.
What was the treatment that the doc did for you?
 

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