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I've hit a very unexpected and unfortunate (for me) impass with my GI Doc

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Posted 1/27/2009 5:24 PM (GMT -5)

Late last year I decided to see the Chair of GI at a well known university school of medicine for my UC. Initially I was very pleased with her as she seemed to be very knowledgeable and caring but recently, and the more I discovered that may not be the case.

 

As some of you know my UC is about 70% under control but I've been having a very strange symptom of excessively large, REAL LARGE massive stool/BM's (most hard and formed but sometimes followed by fresh softer stool) which sometimes can be followed by abdominal spasms which can last for 12 hrs; the spasms only occur after a BM.  I have been asking for help with this she always seems to blow it off saying she's never experienced this in any of her IBD patients before and offered nothing else to help...I have explained to her numerous times that the spasms are debilitating and extremely painful plus I been telling her I cannot gain any weight no matter how hard I try and I feel that the ridiculous amount of stool I am evacuating might be part of the cause.

 

Well today was another bad morning, I filled the bowl with GIANT logs (sorry everyone) and I'd speculate would measure an easy three feet long and about 2's around which also kills my fissure, I then had some soft stool follow and went into bad spasms that lasted up until an hour ago from 9 a.m. So I called my GI requesting to talk with her as I was in agony and desperately am seeking some guidance on what to do. Well guess what? She basically said there's nothing more she can do for me and tried to send me on my way!!! I was shocked. I have been nothing but nice to her and her staff and even wrote her a nice thank you card a few months ago which also said how good I felt being in her hands (she is the head of GI at the university). When I wouldn’t let her off so easily she then asked if I’d ever been checked for sprue and I said yes but she wanted to do it again and basically said if that's not it for me to move on. She also said well you scope in Oct was negative and I had to remind her I started bleeding again in December!! She then took another call and I could hear people in the background so at that point it was almost a one way conversation.  I really wanted to tell her that she works for a research university hospital and why can't she look further into what’s going on with me checking with her collogues etc but after she took the other call had to hang up.

 

I'm shocked and saddened by how uncaring and cold she could be to an IBD patient and to one who is suffering so. My God if I can’t go to a research hospital for help where is one supposed to go with unusual symptoms etc?

 

As always your thoughts are most welcome.

 

Thanks

Posted 1/27/2009 5:45 PM (GMT -5)
It is disheartening when our doctors let us down!  Sorry it is happening to you.

I would suggest for the time being when you talk to her, leave out the large bms and really stress the Pain and Weight Loss.  Those are definite symptoms of being ill!  It is a shame, but, to get attention, sometimes you have spin your sypmtoms for maximum attention.

Do you have a family doc that you can see?

Posted 1/27/2009 6:00 PM (GMT -5)
Thanks.

If I cannot discuss the main part of my GI symptoms with the head of GI doctor at a research/teaching facility then something is really wrong. I've discussed it with my GP and she said to talk to my GI doctor as it involves my GI system. Once the sprue test is taken and the reults are back I will see if I can talk with her again but it appears doubtful that she will...how disheartening
: ((( Looks like it may be time to find another doc and start all over again.
Posted 1/27/2009 6:04 PM (GMT -5)
That really does suck, especially when you like your doctor. My doctor recently told me if Remicade doesn't work he will have to refer me to a specialist (heck, I thought he WAS a specialist, since he is a GI) because he doesn't know what else he would do for me short of recommending surgery. And I really really like this doctor, he even has IBD himself so he's been the most understanding and caring out of everyone I've ever seen. So I'm hoping Remicade works so I can stick with him! Haha.

I agree about stressing more on the pain and weight loss, but if it comes down to it, it would probably be best to find another doctor who will listen to your concerns.

Good luck and here's hoping you find relief soon.
Posted 1/27/2009 6:14 PM (GMT -5)
Thanks ediekristen. She really didn't seem fazed by my weight loss/ability to gain weight and even joked she wished she could have my problem; not very funny as I've always be able to put weight back on before or after a flare and it is not normal for me. She also didn't offer any other explanantion for the spasms. I truly believe that she no longer cares and is seeing way too many patients and wants to eliminate those that are out of the box so to speak. Very disgraceful for someone in her position at a teaching facility. At the very least isn't it reasonable to expect to offer to research my symptoms with her colleuges etc instead of brushing me off???
Posted 1/27/2009 6:18 PM (GMT -5)
It's because she doesn't know what to do. Like she said, she's never experienced this before. It might be helpful to see another doctor, one who has a lot of experience.

I have large bowel movements too when I'm not flaring. The ideal bowel movement should be large, soft, fluffy and easy to pass. Mine can be three-feet long and about two inches around.

Hard and dry bowel movements means that you don't have enough fluid in the BMs. This could be due to being dehydrated, constipated, or on medication. I would imagine having large, hard BMs would be very painful if you have a fissure. Painful fissures are known to cause spasms. Are there any medications you can take for softening stools?

The weight loss could be another issue. Many of us have digestive issues. Some of us have trouble gaining weight. Again, another GI might know what to do.
Posted 1/27/2009 6:27 PM (GMT -5)
I agree it is certainly not too much to ask for her to research or at least act like she cares about your symptoms! I would be very put off by that as well. Maybe try asking her about antispasmodics? My doc put me on something called hyoscyamine once and it really seemed to help. However my new doctor has never even mentioned it, and it seems some don't even know what it is so maybe she just hasn't thought to try it.
Posted 1/27/2009 6:56 PM (GMT -5)
Maybe you need psyllium to make things move more easily? Anyway, I know the feeling of being brushed off when you are virtually pleading for help. My GI the last time, in December, told me I have a problem usually found in ladies in their '80's in nursing homes, he had no cure, and I could take Imodium if I felt bad. I am a 50 year old otherwise healthy male. I will not go back, how can I after that!

Posted 1/27/2009 6:59 PM (GMT -5)
Whaattt!!!! Was your doctor trying to say UC is usually found in 80 year old ladies?? Either way, what a horrible thing to say to a patient "Just take some immodium". I wouldn't go back to that doctor either, he sounds like an idiot.
Posted 1/27/2009 7:24 PM (GMT -5)

I can't believe what I am reading here! That really takes the cake! What kind of a doctor sends someone on the way with pain and someone who is really desperate? Or the thing with the ladies in their 80's and - that one I especially love - "I wish I had your problem, ha ha ha!". skull  

Sorry bbc for your experience with your doc - another one bites the dust! I would see another doctor if possible and drop that doc you have right now. Sounds like fame of being a research doc/doc in a research hospital has gotten into her head.

To gain weight: I know it sounds gross and it probably is, but ... have you tried drinking two shot glasses of olive oil a day? That's like 800 calories. I don't know if that could make you constipated though, but a friend of mine with a different condition used this dirty little trick to gain weight and it worked. I am amazed in a weird way how much you poop volume wise! Don't take this the wrong way, but how much do you eat volume-wise? I mean, where does all this poop come from? You don't have to answer if you don't want to - of course.

I am so sorry you are exposed to such uncaring doctors.

Posted 1/27/2009 7:42 PM (GMT -5)

bbc - Weren't you doing the spinach/sunflower thing at one point?  What happened with that?  Any success?  Because it made me completely better AND made me gain all my weight back.  In fact, its making me kind of heavy right now, because the nuts/sunbutter are so fattening.

I thought I remembered talking to you in the posts for that diet, but if not, you should give it a try. 

PS.  I think your doctor is a total jerk.  Regardless of what she does or doesn't know, there is no excuse for basically dismissing you.  She should do ALL that she can and, if still unsuccessful, make the best recommendation for another (more qualified) doctor.  Its so awful to be treated like that (I know from experience), and I'm sorry you're dealing with it.  

Posted 1/27/2009 7:42 PM (GMT -5)
Subdued/all, great info all, thanks : ). I'm encouraged that you too experience the giant stool syndrome (lol). Maybe I've been sick for so long I forgot what a BM is supposed to be? BTW how tall are you and what's your weight?

My current GI is head of GI at a very well known university's school of medicine so her level of experience was supposed to be top in her field...she almost seems to be saying my symptoms are not those of UC/IBD...IBS perhaps?

My spasms are actually in my abdominal area and not rectal but I wonder if rectal spasms can also trigger abdominal ones? I take peppermint oil caps that are enteric coated which my GI said is a very effective antispasmoic almost as much as Levsen etc. The spasms can last 12 hrs at a time getting less painful and frequent each hour until they dissipate completely. My proctologist said the same stool softener he is recommending for my fissure might also help the spasms as the ultra hard stool might be causing stress on the walls of my colon creating the spasms....I just started on Colace so we'll soon see, hopefully it will work, the Good Lord willing : ) I just added some Benefiber and when I mentioned fiber to my GI doc today (she never discussed it...ever) she said "oh Benefiber, that's  my favorite" redface
With respect to the weight issue I normally have no issues putting on weight either before of after a flare. I will say this, the increase in sugar intake in order to gain some weight is no good...my digestive system lets me know that every time I eat it.

I'm hoping the sprue test she suggested comes back positive...that would be a blessing. I asked her about small bowel overgrowth and she said seemed to not think it was meeting the symptoms I have. I travel quite a distance to see this doc and specifically because she is at a teaching facility where those that cannot find help can go...I guess everyone can go just not me : (

Oh boy, just when I thought I was turning the corner (heck, maybe I am?) makes me think of that famous line in Godfather III

"Just when I think I'm out...they pull me back in"
Posted 1/27/2009 7:55 PM (GMT -5)
Most of my bowel movements are small and very frequent. But occasionally I get these bowel movements, usually preceeded by a great deal of pain, and I will sit there spasming (like you, it's not in the rectum but in the abdomen/intestines) until I pass a little bit of formed stool and then a TON of soft stool. And I mean, I literally feel my stomach shrinking, it almost feels like someone is in there wringing out my intestines. And then I feel 10lbs lighter and TOTALLY drained.

Maybe it's the hard stool blocking you up and then everything just builds and builds until the flood gates break open, so to speak. Now the real question is just figuring out where it's all coming from!
Posted 1/27/2009 8:04 PM (GMT -5)
Even if you don't have the sprue (which means celiac, right?), I think its good that you're cutting out wheat. At least it will cut down some of the bulk. A friend of mine used to eat lots of carbs, and then she got horribly constipated because everything got so "packed." Obviously your trouble isn't constipation, but maybe that "packing" is what's making the big poops? I'm totally guessing on this.

Also, I just reread your signature - are you doing the diet by DeLamar Gibbons?
Posted 1/27/2009 9:15 PM (GMT -5)
bbc, you might want to look up posts by Teacher. about a year ago he was having problems with large bms & it turned out that he had H.pylori in his stomach. Getting that diagnosis enabled him to take the appropriate med & recover fairly quickly. As for your researcher dept. head gastro, I'm truly sorry that you've been getting short shrift from someone you trusted & admired. My longtime gastro got a university medical school appointment with administrative duties in the early 2000s after being in private practice for several years while also teaching p.t. Within a year of starting the new position I could see differences in attitude from a doctor I also trusted/admired. It's a change in loyalty, where their affiliation becomes more important to them than their relationship with most patients. Helping the individual no longer seems to matter where prestige is at stake. Part of this is societal, and part is the doctor's own personality & values. It's a sad experience for us to be let down in our need for consistently caring treatment. Try not to take it personally, but do what you have to do to protect your own health. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 1/27/2009 9:15 PM (GMT -5)

ediekristen said...
Most of my bowel movements are small and very frequent. But occasionally I get these bowel movements, usually preceeded by a great deal of pain, and I will sit there spasming (like you, it's not in the rectum but in the abdomen/intestines) until I pass a little bit of formed stool and then a TON of soft stool. And I mean, I literally feel my stomach shrinking, it almost feels like someone is in there wringing out my intestines. And then I feel 10lbs lighter and TOTALLY drained.

Maybe it's the hard stool blocking you up and then everything just builds and builds until the flood gates break open, so to speak. Now the real question is just figuring out where it's all coming from!

Yup, that's just like me...do the spasms continue for hours and what do you take for them. I see you also have pancolitis (aren't we lucky eyes ). Have you asked your GI doc about this yet?

Thanks.

Posted 1/27/2009 9:17 PM (GMT -5)
Well said...thanks

Old Hat said...
bbc, you might want to look up posts by Teacher. about a year ago he was having problems with large bms & it turned out that he had H.pylori in his stomach. Getting that diagnosis enabled him to take the appropriate med & recover fairly quickly. As for your researcher dept. head gastro, I'm truly sorry that you've been getting short shrift from someone you trusted & admired. My longtime gastro got a university medical school appointment with administrative duties in the early 2000s after being in private practice for several years while also teaching p.t. Within a year of starting the new position I could see differences in attitude from a doctor I also trusted/admired. It's a change in loyalty, where their affiliation becomes more important to them than their relationship with most patients. Helping the individual no longer seems to matter where prestige is at stake. Part of this is societal, and part is the doctor's own personality & values. It's a sad experience for us to be let down in our need for consistently caring treatment. Try not to take it personally, but do what you have to do to protect your own health. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Posted 1/27/2009 9:20 PM (GMT -5)

Katie,

I am cutting back on the wheat and replacing things like regular pasta with egg noodles which breaks-down sugars much differently than semolina wheat etc.

My stool is so tight and formed that sometimes when I wipe after a giant BM absolutely nothing is on the paper.

I am kind of doing my own anti sugar/carb diet...just finding it very hard to add weight back this way.

Kiss520 said...
Even if you don't have the sprue (which means celiac, right?), I think its good that you're cutting out wheat. At least it will cut down some of the bulk. A friend of mine used to eat lots of carbs, and then she got horribly constipated because everything got so "packed." Obviously your trouble isn't constipation, but maybe that "packing" is what's making the big poops? I'm totally guessing on this.

Also, I just reread your signature - are you doing the diet by DeLamar Gibbons?


Posted 1/27/2009 9:31 PM (GMT -5)
Your story is outragious!
Document your last conversations. Do it by sending yourself an email, so it's "date-stamped." I hope you won't need it, but this might be malpractice if you have something serious that has gone untreated because of her neglect.
Posted 1/27/2009 9:38 PM (GMT -5)
Yikes that's scary...thanks Peety.
Posted 1/27/2009 10:03 PM (GMT -5)
I hate when people say I am lucky I don't have to worry about my weight. It is so frustrating. I would much rather carry a few extra pounds than deal with this. If my doctor said that I would probably have to see someone else. My girlfriends always say it as a joke but I find it kind of hurtful. I feel like crap most of the time. I think I am having a mini-relapse from my period. I am tryin to think positive but it's hard. I am sorry your doctor is so inconsiderate. I too poo a lot, especially in the mornings. Sometimes I question where it all comes from. I wouldn't say I have big uncomfortable BMs but I go a lot, sometimes 3x in a row. I will let out 3x as much each morning what a normal person does in a whole day. It's insane.

Posted 1/27/2009 10:07 PM (GMT -5)

bbc said...
BTW how tall are you and what's your weight?

Hi bbc,

I gained weight during my last flare. I was eating too much rice. I wouldn't suggest eating rice though if your BMs are already hard. I'm 5'7" and 130lbs. I'm hoping to get back down to 125lbs in the next couple of months. Now that I'm not flaring, I'm eating less and going more. At least, it feels like I'm going more. It's hard to tell during a flare just how much I'm going each time.
Posted 1/27/2009 10:50 PM (GMT -5)
Thanks guys.

Another great byproduct of the weight loss is my butt has alot less padding and my tailbone and an area around my inner butt are both sore from sitting...how much more must we put up with...this stuff is brutal
Posted 1/27/2009 10:58 PM (GMT -5)
Thanks Scarlet

Scarlet504 said...

I can't believe what I am reading here! That really takes the cake! What kind of a doctor sends someone on the way with pain and someone who is really desperate? Or the thing with the ladies in their 80's and - that one I especially love - "I wish I had your problem, ha ha ha!". skull  

Sorry bbc for your experience with your doc - another one bites the dust! I would see another doctor if possible and drop that doc you have right now. Sounds like fame of being a research doc/doc in a research hospital has gotten into her head.

To gain weight: I know it sounds gross and it probably is, but ... have you tried drinking two shot glasses of olive oil a day? That's like 800 calories. I don't know if that could make you constipated though, but a friend of mine with a different condition used this dirty little trick to gain weight and it worked. I am amazed in a weird way how much you poop volume wise! Don't take this the wrong way, but how much do you eat volume-wise? I mean, where does all this poop come from? You don't have to answer if you don't want to - of course.

I am so sorry you are exposed to such uncaring doctors.

Posted 1/27/2009 11:22 PM (GMT -5)
Hi bbc,
Sorry to hear you have those spasms. I, too, sometimes have abdominal spasm during a BM but it goes away soon.
As for your real large BMs, I can tell you that my daily 'output' is as long as my colon, which is supposed to be around 5 feet long. I have 2-3 BMs everyday with at least 5 stools at 4-5 inches long. LOL.
I am only 5' 2" and I weigh 97 lbs (100 lbs pre-UC). I really can't understand how come I have such an great output.
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