Questions for GI

Hi all.

I have a GI appointment tomorrow and was wondering if anyone had any advice for me on questions I should ask. 

A little about my UC history... In mid-December of 2008 I had diarrhea for two weeks before it turned into diarrhea and blood, to nothing but blood, every hour. I went to the ER and didn't get any help and was sent home to suffer. The next day I saw a GI. The following day I was at the hospital getting a endoscope procedure done. After all was said and done, I was under the assumption that I had ulcerative colitis, which I knew nothing about. Was put on 40mg Prednisone for a few weeks and had to give stool samples to a lab, did UC/Chron's blood work at the hospital, all of which ended up coming back negative for everything. So after I tapered off the Prednisone at the end of February 2009, my GI gave me the diagnosis of having an 'acute' attack of colitis which was caused by some virus or bacteria that ran it's coarse before I did the stool samples. I was med free and colitis free. So I thought.

I went two years feeling perfectly fine. On no meds. Eating whatever I wanted. And having normal bowel movements.

I started dating my now husband a couple of months after I was given my false diagnosis by my GI. Found out my husband had UC. He had his colon removed over ten years ago. Has a j-pouch. And has had no problems with it.

I became pregnant in May of 2010. Had an amazing pregnacy. Loved every second of it. Until November 2010 when I started having abnormal bowel movements. Had this huge urgency to go like it was going to be diarrhea, but it was solid. Also was very dark with white on it. I thought it was from the iron pills the OBGYN put me on... Because on the list of side effects it said to tell your doctor if you have a history of ulcers/colitis. So I stopped taking the iron pills thinking they were the reason for my issues. I began eating a bland diet hoping to get better. But I continued to get worse. And began to have loose stools that began to have blood in them. So I called and made a GI appointment. The GI I saw two years prior was on vacation. So I saw anyone who was available. I did stool samples again, which all came back negative. Had a sigmoid done at the hospital two days later. I was awake during this one due to being 33 weeks pregnant. Just had some loopy drugs. So I could hear what the doctor was saying. I heard him say, "I'm surprised. This is very mild." I guess from the symptoms I had he thought it would be a little worse than it was. And I couldn't imagine it being worse! But I know it can. From what my husband has told me and from reading things online. So, he prescribed Asacol. I filled the Asacol prescription but wish I wouldn't have due to the price. I took it for about four days with no results. I called the GI and told him it wasn't working and I couldn't afford it anyway. That I couldn't handle being pregnant and going to the toilet like I was anymore. So he put me on 40mg Prednisone. Which worked within the next couple of days. I also called to follow up with my original GI the following week, who then put me on Lialda so I could taper off the Prednisone due to being pregnant. The Lialda was free with a prescription card. Nice of the other GI to make me waste money I didn't have.

So I had tapered off the Prednisone by January 1st, 2011 and was still taking two Lialda pills per day. Having normal bowel movements. On January 9th, I began going through Prodromal Labor, which for those of you who have never heard of that it is false labor. I was contracting every five to ten minutes but not dilating. This happened for three days, until I finally went into active labor on January 12th. I was at the hospital on January 10th (thinking that was the day I would have my baby!) and started having loose stools that looked like they were the color of ham. So I was assuming that meant there was blood present. I was sent home that day and continued to have my contractions, but really wasn't having any bowel movements so I figured the ones I had at the hospital were due to my body getting ready for labor. Had my baby on the 12th. Didn't take the Lialda for the three days I was in the hospital. Didn't have any bowels movements until we were home on the 15th, and I lost it literally in my underwear. Thankfully I had a giant pad on since I was having postpartum bleeding! But it was loose and bloody. So I was extremely upset. Called the GI on call. Of course it was neither my GI or the recent one who did the sigmoid. I told the on call doc that I was taking Lialda and he asked if I was breastfeeding. Then he told me to start taking 20mg Prednisone and stop taking the Lialda. Why I don't know. And to stop breastfeeding. So this GI didn't like the fact that I would be breastfeeding while taking any of these meds. While my original GI told me Lialda would be fine. As did the lactation consultants at the hospital. Hmm.

So currently I am going normal once a day and pretty much on no meds... I took a tiny little maybe 5mg chunk of a Prednisone this morning just because I am afraid to not take anything until I see the GI tomorrow.

I guess I am just trying to see if any of you who have had a lot of experience with this can give me any advice on what to ask my GI tomorrow. It all seems so weird to me and every GI does and says something different and I'm just hoping for some answers. And feel like if I don't have the proper questions then I will continue to feel lost in this entire thing.

Thanks!

 

As has already been said, Asacol doesn't work within four days. If Asacol is good drug for you, it will take time for it to give you relief. I'll repeat something else that's been said - you canno keep a bottle of prednisone lying around and use it for a few days whenever you become symptomatic. Eventually it won't work, and you may shutoff your adrenal grands if you don't use that drug responsibly. I hope you can find some good insurance option to cover all of your medical needs. Again, it greatly upsets me when Americans tell me they can't get what they need to become well because their insurance (or lack thereof) prevent them from acquiring necessary treatments. It's very messed up.

What you need from a good GI is a thorough set of diagnostics and a clear diagnosis - full colonoscopy, biopsies, stool samples, and a small bowel follow-through. Perhaps you don't have ulcerative colitis, however. Maybe you have something else that manifests itself with similar symptoms, like IBS, diverticulitis, or some sort of temporary and non-chronic colitis?

I wish you well.

1) Have you had a colonoscopy yet? I didn't see that you have, just an endoscopy and a sigmoidoscopy. IMO you need to know where all your inflammation might be located because different drugs reach different parts of the colon. So you should ask about having one done for that reason. If "no" ask why not?

2) Ask for an RX for Rowasa enema (generic is fine). This will be a big help for the urgency you mention as well as bleeding. This may be the most useful medication you can use.

I agree with much of the other advice you've been given:
Get copies of all your procedures and blood tests. Keep them in a folder at home.

My spouse brings a handheld tape recorder to important doctors appointments. You would be amazed at the things you don't hear (when you're there in person) that are very important.

Since you been treated by several doctors already you should make a list of drugs you've taken and what dates and length of time plus any side effects to give to your doctor. He/she needs that info to go forward responsibly especially when prednisone is involved.

You need to be careful about overdoing the meds. Most meds for UC come with some serious potential side effects. Pred is a short-term med for UC. It doesn't matter whether or not you're pregnant. The longer you are on it, the more chance it will destroy your connective tissue and bones. Remember, it's a steroid.

If your inflammation is in the lower end, rectal suppositories are good. Many GI's won't mention them unless you ask. Then they will be happy to prescribe them.

Ask your GI for a prescription for a probiotic. If he/she won't prescribe one for you, then you will have to get it yourself. You can usually buy them at the local drug store. They will help put good bacteria back into your colon.

If your inflammation is bacterial related, then think about doing fecal transplantation. I did it at home using my granddaughter's feces. It put me immediately into remission. Follow the link below for more information:

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

Your GI probably won't know much about fecal transplantation, and he/she won't be able to help you if you go this route. It's too new of a treatment.

Might as well get your stool checked if it's for a new flare. Otherwise, I'd just go with the GI's advice.

My GI usually takes biopsies every time he goes inside. We are at a higher risk of getting colon cancer due to having UC.

Yes. 'Temporary and non-chronic colitis' does sound the same as 'acute' colitis.

The immunosuppressing/moduating/biologic meds are for when the other meds don't work. They are strong medications.

Post Edited (subdued) : 2/22/2011 7:22:55 PM (GMT-7)