What you say makes sense. There's no harm in seeing the motility specialist, but I am definitely getting an appointment with my GI - for 2 years now we've only communicated post-procedure when I'm not conscious enough to ask all the questions I want...
OK, so I think I'm facing this situation and I need help.
I have had symptoms for 4 weeks now. I have Crohn's diagnosed since 2004, my last flare up before this was in 2009.
My symptoms at first were blood and mucus in stool, but there was no diarrhea (or constipation), but rather normal, formed stool with blood around it. I was also experiencing pain that was just like the pain during my regular flare ups.
My GI did not think this was a flare due to not having diarrhea. He had me do x-rays, two CTs, bloodwork, stool samples for C. Diff. All came back normal. He put me on Methylprednisolone 7-day pack.
Three days into it, I developed constipation. (I had some history of constipation from last year when the motility GI doc concluded it was idiopathic and put me on Miralax. I haven't experienced it for a good 9 months.) Constipation turned into a blockage when my GI had me take half a bowel prep and I simply closed up completely - not even passing gas. Went to the ER and once I started drinking the CT contrast, I managed to pass stool and was sent home.
The next day, my symptoms went back to loose stools with blood and mucus. But, soon I developed constipation again and my GI had me use saline enemas for 3 days which resolved it, taking me back to loose stools with mucus and little blood.
Yesterday I had a colonoscopy. I had a hard time with the prep - it took over 4 hours between finishing the prep and going to the bathroom - somewhat unusual with me. The colonoscopy revealed nothing abnormal, except some inflammation in the rectal area (I had no pain in the rectum at all during all this, just lower abdomen). Other than that, ileum, colon looked clean. He found some remnants of stool in one area prompting him to think I had constipation again. I think the reason for it was that I had a late afternoon colonoscopy and didn't properly clean out the day before, but that's just my guess.
So, after this long introduction, let me get to the point: my GI is going to wait for the biopsies, but if they do not show active inflammation he wants to send me back to the motility specialist with a diagnosis of IBS. I am highly suspicious of this because my Crohn's inflammation has almost always been only at the microscopic level - except for one time, no doctor could ever see anything during colonoscopies.
What do I do next? Do I insist on having a sit down with my GI to argue my case against IBS or do I go see the motility specialist again? I've already printed this article to bring with me to either one. Oh, and by the way, this morning, I'm back to small amounts of loose stool again and lower abdominal pain, just one day after a colonoscopy with only having had one meal.
I don't want my regular GI to pass over any symptoms I have in the future attributing them to IBS. I guess, I'm just really suspicious of this whole IBS diagnosis.
CalGal, if you see this, please advise on how to proceed. I really need some help...
thanks all for reading this extremely long message!View Thread
My GI told me today that I probably have a kidney stone moving through. Ugh. Won't know for sure until the urine culture comes back in two to three days. (?!?)
I got yelled at for using Vicodin for this pain because he thinks I should not take narcotics because of constipation. Whatever - if he was in this much pain, I'm sure he would have gone for Demerol...
I'm playing it by ear. If it gets unbearable, I'll go to the ER. Otherwise, I'm just drinking a lot of fluids and hoping I get better by the 14th when I have to host a colleague from Vienna.
I am so sorry to hear about your trip to the ER and believe it or not, most of us here have had an experience or two or thirteen like that. The exact same thing happened to me before I had the diagnosis. Several times. At one point I had a GI doctor insinuate I was faking it all.
I know that will not make you feel better, but just so you know, it's nothing personal. They do it to all of us, especially women.
As for your symptoms: everything others wrote and I would add - if you haven't tried Tylenol, do try it, sometimes it helps me, not always, but it's worth a try. Also, for the dehydration, get yourself some Gatorade. It is the best thing to help with this and maybe you will be able to hold it better than water - I definitely do. Plus, it's better than water because it has electrolytes and when those get messed up with dehydration, you could get even worse.
Try not to eat any solid foods for a day. But you have to drink plenty of fluids - Gatorade is best, but other stuff is ok too. See if that stops the diarrhea. If it does, introduce some minimal solid food the next day - I usually do saltines. Eat just enough to not be starving. And continue drinking Gatorade. See if that helps - it has helped me a couple of times.
Another tip - if you are not lactose intolerant, get some Greek yogurt. It's a little more expensive than most, but it has a lot of good bacteria. Introduce that with the crackers in a few days. If you can't eat yogurt, you should go to the pharmacy and ask for probiotics that are kept refrigerated. My Rite Aid didn't have them but they ordered it for me. These are not always helpful, but it's worth a try. I wouldn't waste any money on the probiotics that are sold on the shelf because that stuff has to be in the fridge or the bacteria will die. The last one I got was called BD Lactinex.
As for doctors treating you like a drug addict - try to keep as calm as you can when they do that, but you have to be very, very firm. Tell them you are a serious person with a life that has been put on hold by this illness and that you will not tolerate being treated like a junkie. Tell them you deserve better treatment and that you have done nothing to provoke this kind of attitude.
You have to be ready to attack, so to speak, cut that bull in the bud. I've had this happen to me so many times, I already have a routine speech I give when they try to do that.
And please keep us informed about what the GI says. Get copies of all your labs and scopes. CalGal who is now on the IBS forum is very knowledgeable and can interpret most labs and help you get a hold on what is going on. Also, that test being sent to California - there's 10% of us that cannot be quite determined by that. My test came back negative for Crohn's, positive for UC, but it turned out in the end that I have Crohn's. Just take everything with a grain of salt - no test is perfect.
Hang in there and come back with updates. Wish you all the best at your scope tomorrow!View Thread
I go by 'forgetfulagain' because I have forgotten my username and password several times until this current one - it's a good one since it held up for several years...
I have Crohn's although I was diagnosed initially with UC. My symptoms were first noted by a doctor when I was 11 or 12, but I got the UC diagnosis some 15 years later.
My favorite thing about summer is beach vacations. I grew up spending a month on the Adriatic beach every summer. I haven't been to the beach in years and I really cannot afford to go. I hope one day I will either live on a nice beach or have enough money to take vacations...For now I just daydream about it. View Thread