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Appt. w/ GI next week

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Irritable Bowel Syndrome
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Posted 3/28/2006 7:45 PM (GMT 0)
I haven't seen a GI since September's Mayo Clinic fiasco because I felt like I would just deal with it on my own, but lately I've been getting more frustrated with the D, rectal bleeding, and occasional fevers.  They just aren't going away like I'd planned, gosh darn it!  I'm afraid my GI is going to throw his hands up in the air again, though.  I hate feeling like I'm wasting anyone's time, and it's not like I'm totally incapacitated, and I haven't lost any more weight or anything...but really now.  How do I go in there without feeling like a lost little lamb?  What do I want?  I don't even know...I guess I want some validation and something to make my burning a** feel nice and normal, maybe a little advice other than "Shovel in the Tylenol and Imodium," maybe a freakin' clue would be nice.  Is it pointless to go in?
Posted 3/28/2006 8:16 PM (GMT 0)
Stuart is a knight in our medieval reenactment group. He says that it can be tiresome sometimes having a lot of alpha males get together and try to decide things, but no matter how aggrevating it can get, he says "Stay in the Order and *****. Quitting never accomplishes anything because you'll never be heard if you don't belong." I think this is good advice to you too. If you quit going to doctors, what will happen? Nothing. If you keep going to them and *****ing what can happen? Maybe nothing, but maybe something. Something won't happen if you stop trying. (I daresay after being to the Mayo Clinic you know all about alpha males trying to decide something, LOL.)

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.
Posted 3/29/2006 12:35 AM (GMT 0)

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.

Posted 3/29/2006 5:21 PM (GMT 0)
I think you should just go to the doctor and say, hey, I know we don't know what's wrong with me, but we've got to find something that helps because how am I supposed to live like this? You ever tried practicing medicine when you have to make 20 or 30 trips to the toilet a day? Not to mention the danger of being on the verge of dehydration all the time.

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.
Posted 3/30/2006 6:24 AM (GMT 0)
(((Hugs)))
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...
Posted 3/30/2006 5:25 PM (GMT 0)

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! 

Posted 3/30/2006 8:04 PM (GMT 0)

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

Posted 4/4/2006 10:28 PM (GMT 0)
The appointment is tomorrow; thank goodness because I think I am becoming seriously dehydrated with the way the stupid garden hose is acting up.  I'm only taking in fluids today, but still on the loo constantly and it's a pretty gnarly experience altogether.  I need him to help me!!!
Posted 4/4/2006 10:42 PM (GMT 0)
Good luck Sarita... please keep us posted.
Posted 4/4/2006 11:55 PM (GMT 0)
Hey girl, yuck again huh!  I think you should take Keri with you to the dr. (I want her to come with me too cause I feel the same as you about going back and having them look at you stupidly).  Did the capsule pill show any reason at all for your bleeding?  Any results? 

Thinking about you, let us know how it goes.  :-)

Posted 4/5/2006 3:05 PM (GMT 0)
Lol. Maybe I need to rent myself out as a patient advocate and just go to people's appointments with them and bully doctors into helping. I guess I get it from my mother; I'm used to her going to appointments with me and she is a nurse, and she lets doctors know that upfront, so they stop dumbing things down around us and explain things better and, I think, don't slack on the job.

I need like a big foam hammer to hit them on top of the head with and say, "No, try again." ROFL
Posted 4/5/2006 3:38 PM (GMT 0)
Keri,   I want you to come with me to my appointments!!!  I was laughing so hard I fell of my chair!!  You are so darn funny...  It is great to laugh at all of this crap.. (no pun intended)  If I did not laugh I would be in a looney bin!!!  Hey I am moving from Florida to Ohio...  Anyone ever gone or heard of Cleveland Clinic??   I heard it was good for gastro stuff..  Let me know..  Thanks.. :-)
Posted 4/6/2006 5:46 PM (GMT 0)
Oh good gravy!  Nothing too exciting to report here...what a weird bedside manner my GI has!  He's not mean or degrading or deranged, just awkward.  He doesn't look me in the eye, just down at his notes.  I feel pretty uncomfortable around him.  I don't have a lot of choice up here, though.  Anyway, he wants do a CBC, CMP, thyroid panel, and liver panel and then review all my Mayo results before another visit.  Told me to stick with Imodium and Tylenol for now. 

He's kind of contradicting himself all the time.  During my first visit with him he told me that bleeding and nocturnal diarrhea are not typical of IBS.  During yesterday's visit he said that skin tags could bleed and that it's not concerning and also that nocturnal diarrhea can occur with IBS.  He has no idea what the fevers are from but I know he won't address them unless I show an elevated white count.  Otherwise it's Tylenol and Imodium for life! 


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. 

He did give me a script for Zofran, though, without asking any questions.  I love that stuff when I'm feeling pukey!

 

Posted 4/7/2006 3:49 AM (GMT 0)

Oh girl, no answers again sad    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!

Posted 4/7/2006 5:59 AM (GMT 0)

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.

Posted 4/7/2006 2:40 PM (GMT 0)
Good grief, Sarita! ((((HUGS))))
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.
Posted 4/8/2006 3:07 AM (GMT 0)
Cleveland Clinic is one of the top 10 medical centers in the country in most everything. It is more like a college campus with multi buildings, stores,etc. You will get the best treatment ever. It is number one or two in heart problems and in most other diseases but particularly a well known heart center. I dont think you will be disappointed. I have had many friends treated there and just had a friend get a lung transplant there. Good move.
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