I have to chime in because I also freaked out when the doctor said I had a skin tag. He seemed not the least bit worried- I guess because it must be more common than what is portrayed on the internet. I ended up having C-Diff, and I am sure the constant diarrhea made it worse. I also had major hemmorhoids during my pregnancy, so maybe that brought it on. I believe that anal fissures, rather than skin tags, are more indicative of Crohn's.
So in an effort to help my doctor understand how much I appreciate her diligence with me, I gave her two tickets to my symphony concert tonight. We are playing Dvorak's New World Symphony (one of my favorites). I hope she doesn't think I am crossing the doctor-patient relationship line; I just wanted her to know I appreciate her help. Think that's going overboard?
Here's hoping I have a garden hose-free night tonight for my concert! Probably will pop some Lomotil...
Hey Sarita, Did you ever tell us what you play?? I love going to the symphony. When my sister in law (violin) and brother in law (cello) were younger they would play in the symphonys and I would love to go see them. We haven't been in a long time :( Maybe that's a good date night idea. :)
I think you did a nice gesture with the tickets and I don't think its going overboard at all. Its not like you invited her over for dinner (that would be different). I think you probably made her feel appreciated since a lot of doctors ruin it for the good ones with giving doctors a bad name.
Hugs, Des
Co-Moderator ~ IBS Forum
"Sometimes I'm afraid, and I don't feel that tough...But I'll stand back up" - Sugarland
Des, I play the viola and violin. Have been for almost 20 years now! It's a huge part of my life spiritually, and I rely on it for about a quarter of my income (playing in the symphony and teaching). Love it!
Yup! I saw her sitting up in the balcony with her husband/friend/someone. Didn't get a chance to see her afterwards but the concert was a huge hit. Long standing ovation! I hope she enjoyed it.
I read a story in one of my unrelated forums about a woman who suffered from debilitating health problems. She became incontinent and had to wear Depends all the time. Her joints ached so badly she couldn't hardly move and couldn't get out of a normal chair by herself. She was almost totally incapacitated by this undiagnosed problem.
However she did have a slightly enlarged thyroid. Her doctor said it was only slightly enlarged and her hormone levels were normal, so there was no need to do anything with it. He didn't link her other problems to her thyroid, so she suffered for years. Finally it got to the point where she could hardly swallow and she felt like she was being choked all of the time. The doctor still told her that her thyroid wasn't that enlarged, so it couldn't be causing that problem. She insisted on having it out, though. When they took it out, it was HUGE. Her doctor had been underestimating its size for all of those years. What she percieved as fatness and a double chin was nothing but her thyroid. As soon as it came out, she regained control of her bladder and is now back to being a normal human being, able to move and get up and about. All that time, though, her hormones were never off--what I guess is the major factor in diagnosing a bad thyroid.
So, the moral of the story is: what may be the major sign in almost everyone else may not be the sign in you. That lady's thyroid was crippling her, but since it was still producing the right amount of hormones, it went undiagnosed. I hate to be negative, Sarita, but it sounds like you have all of the secondary symptoms of Crohn's, you just don't have the major feature: inflamamtion with ulcers. Just because you don't seem to have that (which they can't scope every last inch of your digestive tract, so it may be up high in there somewhere), doesn't mean that you don't have Crohn's. What's that old saying about it looks like a duck and quacks like a duck, therefore it must be a duck? You poop like you have Crohn's, you hurt like you have Crohn's, you have skin tags like you have Crohn's, you have fevers like you have Crohn's, and no other known diseases fit with your symptoms except Crohn's... maybe you have Crohn's.
I know being diagnosed with Crohn's would be very devistating, but at the same time, at least you would know what's wrong with you, know more what to expect, and maybe they could put you on some medicines that would help. Having had my gall bladder undiagnosed for five years (because I didn't hurt on my right side in particular), I know something of what it's like to be sick and have no explanation for it. Doctors seemed to be reluctant to even say I had IBS because I would go sometimes for months without problems and I hurt high up, not low down and I had this odd tendency to hurt into my shoulder and feel overly full sometimes, yet had no response to antacids. So they just scratched their heads and dismissed me. So I when people asked me why I was sick, I had no answer for them except for "I think it's my gall bladder, even though the doctors don't think it is." When it finally showed up on a test, I was so relieved! I rushed to make an appointment with a surgeon the very next day. I wanted it out! Surgery wasn't nearly as terrifying as not knowing what was wrong with me and having to suffer without hope. I know there's no cure for Crohn's, but at least there are some medicines which will help it--something you don't have access to right now since no one knows what you have.
Grumble grumble...I have thought the same thing, Keri. All the symptoms seem to fit. But how can you have Crohn's disease if your intestine looks normal? I mean, they even did the capsule endoscopy and it was normal (except for those gastric erosions but they said that had nothing to do with my other stuff). Then again, how can you have all these insane symptoms and yet not have any visual findings? I seriously just don't get it. I was at the point a while ago where I wanted my doctor to start treating me for Crohn's, but that's almost unheard of, I think.
I don't know. I'll probably ask her to do the Prometheus test just for craps and giggles but if that doesn't reveal anything, I'll just keep doing my fiber-probiotic-zinc-aloe "thing" until I either get better or I get worse! I don't think there's anything more I can do.
I just started my dairy-free week today. Very carefully reading labels! Also picked up some freakin' aloe vera juice. I'm such an obedient patient; I should get a prize. The juice is actually not that snot-consistency stuff I had in Ecuador; it's not viscous at all, so it should be all right going down in juice or something.
Sarita, I am not trying to "give" you CD....but want to comment about the CE. Didn't you pass the capsule quickly? In fact I think your transit time was faster than my 6 hrs and 52 minutes, mouth to anus. My GI explained to me that the capsule went through the small bowel so quickly that it made the test "inconclusive" because they only got a fraction of the pictures they normally get. Just my worthless $0.02.....Ides
CD for 25+ years; finally Dx 2004. SpA diagnosed soon after.
How come my chronically inflamed/dysfunctional gall bladder didn't show up on two hydascans? I think it was because I was in a period of remission--if you will--when they did the tests. My gall bladder was actually functioning properly that day. Maybe when you had you capsule endoscopy your intestines were not inflamed. Maybe they were the day before, maybe they were the day after, but maybe, just maybe, they were feeling and looking alright on the day you had the test. From your descriptions of your problems, you don't really notice "good days" and "bad days," you're pretty much messed up all of the time. But maybe your being messed up isn't solely a product of unseen ulcers; maybe you have functional problems as well. So you feel "flared" all of the time, but your intestines are only inflamed some of the time. If I were to hazard a guess--and if we assume you do have Crohn's--I would think when you get really bad and run a fever, that's probably when you're having an intestinal flare. I would think that's when they need to run a test on you. My bad gall bladder finally showed up when I had the hydscan done when I was sick with it. You should probably get scoped when you're at the height of feeling bad. Which really sucks because scopes just make you feel worse, but maybe they can find an answer.
The other alternative is that the medicine/treatments you take keeps your intestines from looking inflamed, even though the underlying disease is still there. In other words, medicine and treatements mask some fo the symptoms of the disease. Of course you can't live a normal life and not take something to help it, so it's really a Catch-22.
I'm afraid I'm not being very encouraging. But sometimes theories are all we have to cling to. And since doctors are reluctant to hazard guesses, we just have to do it ourselves. Better to talk about it and theorize than sit around and do nothing at all. My fiance has the exact opposite mentality; he has a tencdecy to say we shouldn't continue to theorize on what may or may not happen (tends to come up when we talk of where he works), but I like to think of theorizing as like playing chess. For every move you might make, you need to contemplate the possible moves of your opponent. That way you won't be caught off gaurd when he finally makes his move. If you contemplate all possible outcomes, you will not only not be terribly surprised when one comes to pass, you may have already have part of a plan formed for dealing with it.
Prometheus test? That would be the titan who stole fire from the gods and gave it to mankind... by mere word-association, that sounds like a potentially painful test. And what exactly is a gastric erosion? Do they not think they lead to ulcers?
Keri, the Prometheus test is the simplest one out there, no midieval torture devices involved! It's a blood test used to detect blood antibodies that Crohn's patients have (usually only about 60-70% of them show up positive, though).
I'm just afraid to push my docs anymore. I don't feel like I can demand any more tests. I'm burned out on them myself. I would do anything to get an accurate diagnosis and start some real treatment, but it just doesn't seem plausible right now. I feel like I should just wait and see, like I mentioned before. I know I have to be own advocate, etc. etc., but when they look at you like you're an alien it's hard to find that inner strength to keep seeking out the problem. You probably know about this, Keri, from your gallbladder saga!
I seriously appreciate everyone's concern and support and have definitely been encouraged to be more of an advocate for myself since joining the board. I am just so tired of *****in' and moanin' to my docs, who give me sympathetic smiles and push up the fiber supplements. I don't feel like there's anyone else to go to. Even freakin' Mayo couldn't help me! That just makes you feel like a complete whacko.
Oh, they didn't look at me like an alien, they just shooed me out the door. Lol. But it's frustrating to know that I was misdiagnosed by multiple doctors just because I didn't hurt specifically on my right side and wasn't tender there. Never mind I had every other symptom in the book and hurt up high--it radiated across my entire diaphram--everyone dismissed it since I didn't have that one symptom in that one place. Well, duh! I had a dysfunctional gall bladder. It wasn't enlarged, it wasn't full of stones and it functioned some of the time. That's why I wasn't sore in that one spot. I did eventually become sore over there when it got kicked up bad near Christmas a few years ago; instead of hurting just at night, I had pain all of the time. That's when it was finally inflamed enough to show up and make the gall bladder itself tender.
I have to admit, I gave up on going to doctors for a year or more due to not getting answers. I was certain I knew what was wrong with me, even if they didn't. When I finally started hurting on my right side, I went to a doctor in order to get the tests done again. When it showed up bad, I went to a surgeon immediately. Didn't even bother going back to the doctor with the results--my stepfather (he did the hydascan) passed the news along to me from the radiologist and I called the surgeon immediately. I wanted it out!
If you can't get anywhere, maybe you should just back off of it for a while. Then if your symptoms change, go back and see if the tests will show up anything new. Whatever's wrong, it can't hide forever.
