Advice needed immediately!

I went to the ER about three weeks ago due to relentless diarrhea, dehydration, and horrible abdominal cramps. The ER doctor only came to see me twice. Once for obgyn tests and the other to tell me my blood tests came back positive for anemia. He sent a nurse to me with papers printed out from wikipedia for a low-fiber diet and said I mostly likely had IBS. He prescribed bentyl which I took for one day before I couldn't breathe and I started having hallucinations. After researching IBS and seeing that it is often diagnosed for other things, I strongly believe this is not what I have.

My mother did some research and thought perhaps I had celiac disease instead. I tried the gluten-free diet which helped for about a week I believe because that diet is easy on the stomach, but now my symptoms have worsened exponentially.

My bms have increased to about seven times a day, there is always a substantial blood in them, I have stomach cramps that are so bad all I can do is lie down, the loss of blood and exacerbated anemia has led to headaches(so I think), I can only stay awake from 5-7 hours a day, and I cannot engage in any real activity. I attempted carrying a game board up some stairs, but it was so heavy and the act of walking up the stairs forced me to lie down and do some heavy breathing. The pain and the effect on my quality of life in general sometimes just leaves me in tears.

I've made an appointment, but it is not for another two weeks and then some. I'm worried about how long I can continue with this constant diarrhea and consequential fluid and blood loss. I feel helpless because I will have no choice but to look for a job soon and I have finals to study for. I try and engage in normal activities by my day is normally limited to eating very little, bms, and sleeping from the pain and lack of energy. I'm worried about my health...I've never felt this horrible in my life and I've had some pretty severe illnesses.

What I want to know is when you thought you might have a problem , how long did you wait before you went to see a doctor? Also, is my case very serious or is this normal for a UC flareup? I don't know if I need to try and make an earlier appointment or simply wait it out and hope time and rest will alleviate the symptoms.

Please, please, PLEASE give me some feedback.

I don't think you should wait to see a doctor if you are anemic, having bloody stool, and possibly dehydrated. That is not something that should go untreated for a couple of a weeks.

Your ER experience sounds like it was fairly pointless. You need to see a good GI doctor asap. If you don't know of one, ask your general doctor (or any doctor you go to) for a recommendation.

First of all, sorry you're going through that! Second, I would find any doctor I could (maybe a family doctor?) and see them and tell them what's going on, and maybe they can get you in with a GI right away. If you get any worse, I would go to a different hospital. Also, your flare sounds like a "normal" bad flare. If you have any other questions, just ask.

Sorry so hear about your discomfort !! Like everyone else has mentioned, you should certainly try to see a Doctor quicker. Or maybe even return to the ER and tell them you are not doing any better. I had to go to the ER in March with severe abdominal pains... although I told them I have Colitis.. they insisted that I only needed some Tylenol for the pain and then insisted that I go for a brisk walk to relieve the gas I was filled with. Yeah.. I couldn't walk at all because of the pain let alone go for a BRISK one. In any case.. I made an appt with my Family Doctor who told me I am having a colitis related flare and he has been trying me on different medications to try to comfort me until I can get in to see the specialist <June>. Sometimes the ER ppl just don't understand and will give you something just to make you go away....

Good luck. :O)

they gave you medical advice for wikipedia? that's kind of scary in itself.

My son started with probiotic, it seems safe, watery stool, some blood in the stool, all symptoms the same but the situation does not get better drastically, i guess it takes time.

I know, I was not impressed when I was handed a sheet from a website that can't always be called reliable. Or really from a website in general. He did take stool samples and blood tests, also a CT scan(what an odd feeling from the IV...), but simply told me I had IBS and to take bentyl. What really bothers me though is that I have had a hiatal hernia before, and it is also in my family history. I told him this BEFORE he prescribed the bentyl but I researched the medication and many places explicitly stated not to take this medication if you have had a hiatal hernia. It seems that that visit to the ER was a waste, but it at least led me to do more research on what I might have.
No one ever even mentioned the possibility of celiac disease, but after that trip I'm not so surprised...
I understand the ER is a very busy place and many people had it much much worse than I did, but it has to be saying something when the nurses ask more questions and outperform the doctors. Funny thing is, even though the nurses had all of the information and told the doctor, he didn't seem to listen. He simply asked them again and didn't listen to me either. Hence the respiratory problems and hallucinations.

But I would like to know when it is considered a severe attack and if I've waited too long already to allow the symptoms to come to this? I know one of you said it was normal(made me feel much better) but is it common to wait long enough to experience normal?

Sorry you had a bad ER experience-- sometimes a patient just gets seen by a resident there, not an experienced doctor. I agree with Sara14's comments entirely. Also, it seems that taking a reliable vitamin/mineral supplement daily is more important right now for you than probiotics, since you're losing iron & likely potassium, too, etc. I had a lot of bleeding prior to diagnosis, but managed not to sink into anemia; the gastro who diagnosed me said it was because I kept replacing the nutrients lost from D. Try to keep yourself hydrated; try the BRAT (bananas, rice, applesauce, toast) diet to calm the D as much as possible. Let us know how you're doing as time/strength permit. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Lmills - I agree with Old Hat that you might want to try the BRAT diet and take a good multivitamin. I take children's chewable vitamins because I read once that they were easier to digest, but I don't know if that's true or not. I like them better than swallowing another pill, either way.

When I first got symptoms (they were mild at first, then got worse and worse over a period of about a month), my insurance from my new job hadn't kicked in yet, so I waited a couple weeks. Then, the pain became so bad that I went to a free clinic in town (I didn't know about it before). They told me it was just an anal fissure. I got progressibely sicker and went to a regular clinic even though my insurance hadn't yet kicked in. They again told me it was just a fissure and the stomach flu. A few days later, I was even sicker, so I went to another doctor. She actually listened to me and began the process of running all the tests, including the CT scan (yes, the IV fluid does feel weird going in!). On my CT scan, they saw inflammation throughout the colon, so I then got a colonoscopy, which showed UC.

As for your question regarding severity, here is a link that explains what symptoms are considered severe. Scroll down to the "symptoms" section: http://www.uptodate.com/patients/content/topic.do?topicKey=digestiv/10728

I recall the pre-diagnosis period being incredibly frustrating. I made an appointment with my GP at the stage when I had some blood: maybe only a teaspoon or two, but obviously there. By the time I saw the GP a few days later, there was more blood and the start of some serious diarrhea. At the doctor's office I got a finger up the bum, a confirmation that yes, there was blood and a referral to a GI specialist (who, when I made an appointment, was unavailable for over a month). I also got a little take-home test kit which I was supposed to use.

When I got home, I discovered that the test kit was to determine if I had blood in the stool, and that I was supposed, on three consecutive days, to collect a sample from the middle of a bowel movement. The test kit recommended defecating on a piece of paper in order to be able to find where the middle was. Meanwhile, my symptoms were becoming very quickly worse and I was getting increasingly panicky. Anyhow, by day three, my "stool" was basically just blood and mucous, and I remember squatting in the bathroom over a newspaper covered with a large red pool, thinking to myself, "Hmm, I wonder where the middle is...", before realising how totally absurd that was and starting to giggle uncontrollably. So I smeared the sample collector and sent it back to the doctor's office. It got even more ridiculous a couple of days later when I got a phone call informing me that I did indeed have blood in my stool. At that point I concluded that the system wasn't really working to my benefit. So I called up the GI office, explained that I probably wouldn't live for the month they wanted me to wait, and got myself in to see the GI that afternoon. Speaking with a doctor who knew what was happening and had some idea what possible therapies might be was a huge relief, at least psychologically.

Anyhow, I learned two things, both of which have been reinforced by lurking here for a couple of years:

1. A typical doctor (GP or ER) probably won't really know much about UC, and will underestimate the severity of the disease.

2. It helps to be forceful, albeit polite, when dealing with doctors and their office staff. Make sure you get what you want: they are there to help you.

Good luck!

Craig

That's great to hear! Let us know how your GI appt. goes tomorrow.

the woman in the bed next to me at the hospital when I had my colonoscopy a few weeks ago had what you are having done and she went in 1/2 hour before me I think and we left at the same time and she was talking and everything. sorry that's all I can add. I had demerol in 2005 and it was hard to wake up from.

Colonoscopies are uncomfortable, but not severely painful for most people. Some of our members forgo medication and remain awake during the scope. You can hear stories about side effects and adverse effects from any medication. People not responding to the medication is not common, and because it's given through the IV, they can give you a little more if you're experiencing discomfort. Giving the Versed means they can give you less Demerol. I usually wake up quickly. I'm a little sleepy for the rest of the day, but other than that I'm fine.

You will need to have someone drive you to the appointment because you aren't supposed to drive for at least 24 hours after the sedation.