Hi there,
We are new to this forum. I've been reading posts for the last few days since we've been home from the hospital but decided to register and ask a few questions.
My daughter (19 yo) was diagnosed with Ulcerative Colitis in early May. Mild UC. GI put her on Lialda (4) pills a day & Allign probiotic. She did beautifully. Symptoms were better within 5 days and she was having normal BM, no urgency, no blood & she was eating well and feeling well. Initially she was having anywhere from 8-10 BMs a day. That went down to 1 BM everyday or every other day. You can imagine how happy she was and so were we.
Sometime in late June/early July her symptoms returned worse than before. Her Dr. gave her an antiobiotic for travelers diarrhea. She took the antibiotics (Xifaxan) for 7 days with no improvement what so ever. He didn't feel 100% that it would work but he thought we'd give it a shot before considering steroids. All along he had been adamant about not wanting to put her on steroids.
We went back in and had a sigmoid done. Sigmoid showed UC. He still was calling it "mild to moderate". But since it seemed the UC was not responding to the Lialda that we needed to get her better. She was growing weaker and sicker b/c of all the BMs daily. So we started the Prednisone at 40 mg. 2 weeks at 40mgs. We went back and she was 100% better. He felt we should begin tapering her off the steroids.
So we went from 40 down to 30 mgs. for 10 days. No problems. We then went from 30 to 20mgs. That is when the b*stard of this disease decided to dig it's heels in and not relent. She got worse by the day. We were now back to where we started in May ! We went back to the GI and he upped her Prednisone back up to 40mg. No improvement this time. We continued with the 40mgs but she was getting increasingly worse. On September 10th we brought her into the office and they sent us directly to the ER to get her some IV fluids and to give her the steroids intravenously. She spent 14 days in the hospital. That was completely unexpected. We thought maybe just a few days at best.
She was given Hydrocortisone via IV. She was given morphine b/c the pain was not tolerable. She had to get 12 runs of potassium (over the 2 week period) b/c her levels were sooo low. She also got an iron infusion about 2 days before she was released. Our daughter had to spend her 19th birthday in the hospital. When she wasn't getting potassium intravenously she was getting it by mouth. Well the potassium affected her stomach so bad that she now had upper abdomen pain. She was then taken of the oral potassium. She had 2 xrays and 1 cat scan to make sure there were no perforations or obstructions. She had another sigmoid done in the hospital which revealed severe UC.
Sometimes you can see her colon spasming when she is laying down. It literally looks like there is an alien in her belly.
She was released on 9/24/10 and still is not 100%. No where near it. We went to the GI yesterday and he drew some blood for genetic testing for the 6MP. She was also tested in the hospital for Remicade. 3 pinches on her arm ?
Is the next step 6MP ? She is having about 6-7 BMs a day when she isn't taking anything for pain. When she had Vicodin for the pain the BMs were more like 3 max. and there was no cramping. The vicodin was prescribed by another Dr. in the same practice but her regular Dr. is against them. Even though she was given morphine almost every 4 hours at the hospital. We know the narcotics slowed down the bowels but at this point isn't this a good thing ? GI won't refill her Vicodin and she is suffering horribly. We don't know what to do for her. She drinks peppermint tea. I also have started her on the spinach/sunflower seed&butter diet. As anyone who has a child knows that it is VERY difficult to see your child in pain and you are completely helpless !
So if you've read this far, I thank you. Below are some questions we have. We are at a loss as to what the right thing to do is ! She is 19 years old and of course it's her decision but as parents we want to help her make the best decision with the fewest side effects.
Which is the lesser evil ? The 6MP or the Remicade ? Also, if she takes the 6MP and it doesn't work , do we have to wait for it to be out of her system before we can try the Remicade ? Does that lessen the risk of cancer ? On average how long does it take 6MP to work ? Do you get better slowly or is it basically all at once. When do we know if we need to abandon the 6MP and start something else. Below I will also list what she is taking/doing and maybe someone can offer some suggestions.
Thank You all in advance for any insight or words of encouragement you can offer.
P.S. Just wanted to add that in Dec. 2009 she began taking Yaz the birth control pill b/c she was having very irregular painful periods. She is a tiny girl with hardly any body fat. She was experiencing some diarrhea before the Yaz. She has since stopped taking the Yaz in the event that it was making her UC worse. Just thought I'd throw that in .
Lialda 4 pills 1 X a day
Allign 1 pill a day
Prednisone 20mg 2X a day
Caltrate D 1X a day
George's Aloe Water from Whole Foods. Roughly around 6 ounces a day. (Not sure if it's doing anything)
Just today my husband added Fish oils to her list. 2 pills 2X a day from now on.
Started eating the spinach & sunflower seed diet on 9/25/10...Initially it looked like it was working. Her stools were becoming more and more formed. Just today though her BMs are a little softer and somewhat watery. Will continue with the diet though.
We'd like to get her off the meds 100% but not sure if that is a realistic thought. At this point we just want her better !