Besides, even if they can't help you, perhaps what's going on with you and the information you pass back to them will help them help someone else. Doesn't help your burning a** any, but it may make you feel minutely better to know that someone else's burning a** is getting a little relief.
Has any of them said, "Okay, so we can't find IBD, but you act like you have one, so we're going to treat it like one?" I mean, would it really hurt anything at this point if they treated you like you have Crohn's, even if you don't? I'm sure you would settle for a treatment that worked at this point even if your disease doesn't have a name. You'd probably settle at this point for someone delcaring you have Sarita's Syndrome, lol.
Keri, you're right. I don't want to be on medications I don't need to be on; but even a trial of something, like one of those 5-ASA drugs used to treat Crohn's disease - could it do significant harm, really? I have been through the ringer with various drugs/concoctions/voodoo cures that had more potential for dangerous side effects, I'm sure, than a single drug would. I'm just not sure how to approach him about that. I just wish there were some way to be sure about what this is to treat it effectively and not have a piecemeal approach to it.
I feel like absolute crap garden-hose today. I'm getting back into one of my "poor me" modes instead of my usual "blow-it-off-and-make-garden-hose-jokes" attitude; hopefully just for today. I'm going to go home early and take a nap and drink chicken soup and Gatorade and cancel this afternoon's violin lesson.
So, let's adopt a trial-and-error approach to treating me. Shrugging shoulders and scratching heads isn't going to cut it anymore. I don't care if you prescribe me ground bat spleens because your native tour guide swore by them when you were on vacation in the Yucatan Peninsula last summer; we've got to find something. And here's where we start. I have symptoms in line with someone who has Crohn's. So let's talk about how you would treat me if I actually had Crohn's. What harm will the medicines do to me if my intestines are not ulcerated or inflamed by an IBD? I already visit the E.R. every month or two for pain and dehydration; can these medicines make me worse than that? No, then we'll try them.
I think you need to get into your "I'm mad as heck and I'm not going to take it anymore; kick butt and take names" attitude before you go to the doctor. I sure would be mad at doctors and the world if I were you at this point!
I am sorry you feel so bad again, though. My guts have been acting up on me for the past week and a half and I can't figure out why. I think I might have a bug because Stuart's are bothering him too, although he's blaming it on some of his medicines. I think maybe we got a little plague, lol. But it definitely sucks to be doing well and then suddenly not be doing well and to keep not being well. It gets old really fast, and I'm nowhere near as serious as you, so I can only imagine how much it sucks for you.
I feel for you, Sarita. I was so happy to read about your remission... You were doing so well. Don't lose hope just yet, that is not the Sarita we know.
I love what Keri wrote (good job!)... Go to the docs with your arms up in the air and your shoulders shrugged. But don't be defeated. Don't be ashamed for being there or feel you are wasting anyone's time. Introduce yourself and ask if s/he is up for a challenge. Make one of your usual garden hose jokes. But do like Keri mentioned, be firm and don't let them blow you off.
I'm all for the IBD approach. You haven't got much to lose. Although, I must say, I would stay away from the Prednisone. Steroids should be the last resort (hmmm... are you there yet?).
You think you'll have to do another scope? That sucks. Come to think of it, I would rather do the scope than the barium crap. 1 vote for scope, 0 for chalky paste
I hope Adam is waiting on you hand and foot during these tough times. Feel better sis...
Co-Moderator for the IBS Forum
Thanks girls :)
I'm going back to the same GI here in Anchorage. Even though his bedside manner left a lot to be desired, he was thorough when I saw him (he was the one who ordered the capsule study, as well as the various blood/urine tests for lymphoma) and he, if anyone, would probably be the most proactive...although you never know, I suppose. I think I will ask him point-blank if he can help me anymore and if not I will see a new GI. I don't want to take any steroids, that's for sure! That's just going way too far unless there is a definitive diagnosis.
Yesterday wasn't such a bad day, only had 5 garden hose episodes. Towards the end I was in the middle of clinical supervision at work and my whole department had to stifle their giggles when I hobbled back in, you know that walk we do after our bathroom trips, trying to relieve the searing pain of the burning a**!!! It helps that I work in the children's mental health department at a social services agency - our sense of humor is quite deranged (we see some crazy stuff, so I guess it has to be).
I am going out of town this weekend with my very deserving Adam and six friends to celebrate Adam's 26th birthday. He has no clue where we are going (Homer). It's going to be so wonderful and beautiful - spring is springing here, finally! We have about 13 hours of daylight now and it won't stop until we have 20 hours of it on June 21!
Hi Sarita!
Our bad guts are so in sync, it seems! I just saw my GI here in the states to get the results of my last 3 stool samples, and only one showed a few white blood cells. So, basically, I still have no answer or solution. He wants me to try and deal with the D until the baby comes and then see how I feel. He also thinks the pregnancy is making the post-infectious IBS worse. He said he doesn't expect me to have normal bm's with all the infections I've had anytime soon. Ithink by visiting your GI and checking things out again you'll at least have a bit of peice of mind that you do in fact have IBS (if they can rule out everything else)
It still sucks tho!
Good Luck!
Julie
Take care, Softy
I need like a big foam hammer to hit them on top of the head with and say, "No, try again." ROFL
Ryleigh
I did ask about IBD treatment and he sort of hemmed and hawed. "Well, it's probably not inflammatory bowel disease, and I don't want to put you on steroids [good grief, who in their right mind would choose that devil treatment if it wasn't absolutely necessary anyway?!], but let's see what your bloodwork shows," etc.
Oh girl, no answers again 
I have skin tags also and apparently I read somewhere that there is a difference between the skin tags of crohn's and those of "nothing". Don't know though.
Now I'm not a brain surgeon but mocturnal diarrhea, fevers, skin tags, hmmmmm.... How frustrating!
Take care, Softy
Another little update...I was minding my own business today at work when I got hit with that awful upper abdominal pain again. Hasn't happened in a few months this badly. It comes on like gangbusters. Definitely 10/10 pain. Called the GI and he said to go to the ER. I haven't been there since November - but off I went and like always they pushed the fluids, gave me the "GI cocktail" of lidocaine, Maalox, and Pepcid, none of which touched the pain at all. Couple hours later they gave me a dose of morphine, I had another nasty wave and they gave me another dose, and then the doc came in to tell me my bloodwork was normal and that she was "kicking me out" with a script for Protonix with the hopes it would heal my gastric erosions that may possibly be causing the pain. All in all I was there for about seven hours and, at least, left feeling better than I did when I came in.
Now I have a morphine hangover and am battling the ever-present nausea that accompanies all narcotic interactions. Adam was by my side the whole time, rubbing my back while I cried into my pillow. His presence, more than any doctor's, was the most comforting treatment, even if it didn't make the pain go away.
You went 5 months without a trip to the ER... Maybe now you will beat it. Remission will happen again.
That Adam sure is a keeper.
I hope you're home today taking it easy.
Co-Moderator for the IBS Forum