Posted 4/27/2008 8:49 PM (GMT -6)
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.])
Posted 4/27/2008 9:05 PM (GMT -6)
I'm glad you're getting so much good advice!

It sounds like you are worried that you let it go too long, but I would not worry about that. Sometimes UC seems to go into high gear pretty fast. It's common for me to be totally fine and then if I ignore the first symptoms of a flare, I can be nearly as bad as you've been in a week. I hope you are not blaming yourself for being sick or letting it go. I really don't think that anyone expects things to get bad quickly. Hey, it's good to be optimistic! Once you know what you have and how to treat it, you'll be better-prepared to get your symptoms treated at the very beginning.

Hang in. I hope you are able to continue resting. I think that many of us find that 9 or 10 hours of sleep a night is really helpful! But you'll need some meds to get this under control so I hope you can get a Dr appointment soon! :)
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy

Posted 4/27/2008 10:44 PM (GMT -6)
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
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv

Posted 4/28/2008 8:37 AM (GMT -6)
call your Doc and tell them how much blood you are losing and that you need to come in asap.

before my dx, I was told it was from eating Wow chips (remember that whole Olestra thing...) anyhow, my Mom had UC so I just knew that's what I had.

I kept on getting sicker and sicker just like you. Then I was losing toilet bowls full of blood and when they told me I had to wait 3 mos to see a GI, I was like, listen I am losing toilet bowls full of blood I don't know if I will be alive in 3 months, they got me in the next morning.

I was just like you, I was so tired I could barely do anything due to blood loss and being in a full on flare.

Then they put me on rowasa enemas and sulfasalazine and in a few days I started to get better.

Hope you are dx'd soon and able to start treatment.

My advice, research your dx, be strong, take your meds unless they make you sick and always call your GI if you feel you are going into a flare.

All my best,
Beth
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 20mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Posted 4/28/2008 3:30 PM (GMT -6)
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
Posted 4/28/2008 4:51 PM (GMT -6)
Update!!

I went in for an obgyn appointment today not expecting terribly much, but they had me fill in medical symptoms/problems/etc. and the obgyn doctor was EXTREMELY helpful. He gave me iron for my anemia for one. While the other doctor told me I was mildly anemic this one informed that it was an extreme case(9.4 instead of the norm which is supposed to be in the 30's). Then he told me he would ask the GI department if they could get me in sooner and I now have an appointment for 11:00 tomorrow. I've never been more pleased with a doctor. It wasn't even his department but he still went through all of the effort to help me out. I hope others will have this fortune as well.
Posted 4/28/2008 7:03 PM (GMT -6)
That's great to hear! Let us know how your GI appt. goes tomorrow.
24 years old
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly; Canasa (1,000 mg) in the morning
Nature's Way Primadophilus Reuteri 2/day; Chewable multivitamin; Metamucil; Viactiv

Posted 4/29/2008 3:26 PM (GMT -6)
I went in today, and the doctor told me there is also a possibility of crohn's disease. They said they're doing a colonoscopy and endoscopy while using demerol and versed. Ive read reviews about how this may not work sometimes and that many people remember the procedure as really painful. Honestly, I'm scared because I've had trouble waking up sometimes, because people say this procedure can be extremely painful, and because I still have no idea what they're going to say that I have...
Has anyone here been through this procedure and which IV sedations did they put you on?? Can you remember if you felt anything?? A tad bit worried..
Posted 4/29/2008 3:30 PM (GMT -6)
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.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.

Posted 4/29/2008 3:42 PM (GMT -6)
I had a colonoscopy last year with demerol and versed. One of the best colonoscopies I've had.(and I've been having conoloscopies for the past 27 years) I have previously woken up and had tremendous pain during the procedure, but not with the demerol and versed. I've heard the same from others also. This combo of drugs works very well. Good Luck, I'm sure you will be fine with this............
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............

Posted 4/29/2008 4:07 PM (GMT -6)
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.

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