When you say NP you mean nurse practitioner? Unless I misunderstood that, there is no way in h... that he should be discussing surgery or Remicade or anything with a nurse practitioner! He needs a gastroenterologist ASAP. And you have to get a good one.
Secondly, there is no reason to jump into surgery if he only tried steroids and Remicade. My GI gives me steroids in short doses for flare ups and keeps Remicade as an option for when/if steroids stop working. Why was he put on Remicade to begin with? Plus, he needs to be on Remicade longer than just the 3 initial doses to feel better. And he would have to receive them regularly for a longer period (I think the studies took 14 weeks as the marker for when Remicade is effective). If the NP gave him Remicade because she doesn't like steroids side effects, Remicade is, in my mind, 10 times worse because of all the very dangerous side effects, but that's just me.
In any case, surgery is something you have to discuss with a very good and experienced GI doctor. Please do that first before you decide on anything else.
Oh, and one last thing: was your boyfriend every on Asacol or similar medications? If not, why not? let us know.View Thread
So sorry to hear your little one is having so much pain and trouble with her tummy.
As for the results: Mild focal active colitis is just what you've been told - inflammation in the colon, focal probably meaning it is limited to specific areas (you can have the entire colon inflamed - I did).
The fact that he gave you an ulcerative colitis drug points to a suspicion that your daughter indeed has UC. Did the doctor have anything to say about UC?
Also, did they do the blood test for Crohns/UC? There is a test that distinguished the two that the doctors will do when they suspect inflammatory bowel disease.
Where else did they do the biopsies or do you not have that information? Did they find anything in the stomach/duodenum from the endoscopy? (I know you said it's normal, but I'm just wondering if they took biopsies there too)
And is your daughter feeling any better on the balsalazide medicine? Does she still have loose stools?
I have Crohns and my symptoms started early in childhood but at that time they didn't know much about this and I wasn't diagnosed until I was well into my 20s.
My final suggestion is to try your daughter on yogurt - when I was in the worst flare ups the only thing I could eat was yogurt. Even if she likes some with fruit, just look for active bacteria in it - might as well get the probiotics with it. (My vet even gave my kitty yogurt with blueberries for diarrhea and it worked! so I'm a big believer, I even make my own) Saltines and gatorade are also a good diet when it gets bad.
Let us know about those result a bit more and how your daughter is doing now. If she's doing better it can be a good diagnostic sign as well.View Thread
I've had Crohn's for several years now but in the last two years or so I've had problems with constipation. They are not sure why - the motility doc didn't find anything that would explain it and my IBD GI doc is also not sure. (they found faster motility of the small intestine on barium imaging but both of them said those are unreliable studies)
That's the background. Last week I was having similar symptoms to what I had this year but I was noticeably constipated (I still had 5-7 bowel movement just very hard and small amounts). I called in and did 3 days of enemas plus Miralax. Didn't help. Then my doc had me do a Miralax bowel prep. And here's where it gets weird. I drank the prep, had another enema and started passing stool. After a few hours it was all just liquid. It didn't stop and all of next day I was passing almost clear liquid. I had trouble hydrating so last night I went to the ER to get an IV. The ER did an x-ray and found that I was STILL constipated! Dr. said that it happens sometimes that the water passes by the stool and a person doesn't clean out. I didn't believe my eyes so I called my own GI's office and the guy on call confirmed this is possible.
Today I was a little better until I had food - the docs insisted I return to my normal diet. I am very nauseous. I feel week and have a hard time moving around. I'm very bloated and it's painful in terms of a pressure pain, nothing sharp.
What do I do? Should I go back on a liquid diet? Will something else besides Miralax help? I'm very uncomfortable and can't possibly work if I keep feeling like this, but I get a feeling the docs don't care because they've ruled out anything dangerous. They just want me to "wait it out and hopefully it will clear soon."
Any suggestions you have are greatly appreciated!View Thread
I have also developed constipation in the last year or so. I had seen a motility specialist who was pretty sure it was idiopathic, meaning, with no specific cause. He put me on Miralax, upping the dosage until I was passing stool - about 3-5 doses a day.
In terms of diet - focusing on fiber from grains has made my constipation worse. However, eating more fruits and vegetable fiber has actually helped. I eat a lot of fruit now, especially plums and apricots if I can find them. I stay away from high fiber cereals and other grain-based fiber.
Here's something to consider, however. This last time, I started having typical diarrhea symptoms at first and then reverted to constipation. It finally got better only when I started Canasa suppositories to treat the inflammation in the lower part of the colon. It turns out that proctitis - the inflammation of the rectum and lower colon can cause constipation! I've also used Rowasa enemas in the past and they also helped my symptoms.
Miralax is such that if you keep upping the dosage eventually you'll have to go - it's used for bowel prep. The thing is to stick with it. It's a pain to keep mixing it into drinks throughout the day, but it's better than feeling like you've eaten a ton of bricks...
Have you seen a motility specialist? I would do that before having surgery.
So, that's what helped me. I hope you feel better soon.View Thread
I have to pay the $500 bill for the new wheels I just had to replace on my car so this will cover that bill which was going to put us under.
The remainder will go to other bills I think. We've been having some money problems lately, medical bills being a part of it, despite having good insurance.
But, I think I'll take my parents out to lunch and go to the movies with my hubby...
p.s. just as an update - I'm on Entocort now going into 3rd week and Canasa in addition to Asacol which is my maintenance medication. Feeling a little better, but it's still up and down and I'm taking it day by day. I want to give Entocort a chance to work before I bail on it...View Thread
This is a technical question, but I figured some of you might know something about this.
I received an e-mail from supposedly WebMD sponsor letting me know I won the May Profile Photo Update Sweepstakes. This person, Phil Schaaf from Pacific Sports Marketing is going to send me a package including a tax form for me to fill out and return to him.
I'm suspicious of anybody asking for my social security number as I imagine this form will so I was wondering if any of you know whether this is a legitimate sweepstakes etc.
Thanks for any advice. I already sent an e-mail to WebMD customer service but you never know if they'll answer.
OK, so my GI doc is really awesome. Every time I talk to him, we have total understanding and we agree on how to proceed. However, when I communicate with him via his nurses, somehow everything is confusing and illogical.
So, after we went over all of my symptoms, he thinks it's either Crohn's inflammation in the small intestine, somewhere where they haven't been able to see it or it's an imbalance of the gut bacteria.
To rule out inflammation he has just put me on Entocort (thank god my insurance paid for it) and in a month we'll re-asses my symptoms. If Entocort doesn't help then he wants to try a combination of antibiotics and probiotics to get the gut bacteria in balance should that be the cause of my problems.
Overall, very good visit. I was very nervous when I came in because I have had so many awful doctor visits in the past, but he is really an excellent doc and is willing to explain everything to me in detail (which I really like).