Sulfasalazine Side Effect?

Okay hi..and help!..new here, my husband was Dx with UC almost 2 years ago when he was having bloody stool...that was the only symptom...went on for months and finally told him to go in. They did a colonoscopy...said he had some inflammation way up in his large intesting...took a biopsy. Said it was UC. Put him on Prednisone and Sulfasalazine x 4 a day (2000 mg or whatever). So he takes them and the bleeding stops. Goes on a while symptom free and wonders if he can just stop the Sulfa as nothing bad is happening...doc told him to give it a try...goes a couple months and starts noticing bloody stool and major itching in his rectum...not a lot of blood but he thought it was a flare...has zero pain with the colitis...just diarrhea a few times a day. So he calls his doc and he gives him prednisone and told him to get on the Salfa again...okay...at this point I'm annoyed and want a second opinion. So he goes to Mayo. They set up a colonoscopy...well in the meantime he thinks he's getting another flare coming on...gums are bleeding and his rectum itches bad...little blood when he wipes...this is when he's on the Sulfasalazine still...okay...well good timing if you're flaring for a Colonoscopy...so we go to his appt after the scope and his doctor says everything looked great, no flare. Okay so why are his gums bleeding so bad and his rectum itches. At that point he says the gums can be a symptom but only if you're flaring and said the itching is dermal...not associated with the colitis at this point... use Desiting and keep it dry...this is the only thing bothering him is his mouth and rear!!!! He did say he's still having somewhat loose stools with urgency in the mornings but never diarrhea. Then the doc suggested getting off the sulfa a few days and see if that helps...he said the blood from wiping was from the irritated skin obviously...so he's wondering if the sulfa is causing his loose stool. He also mentioned his platelet count seemed low and to retest. Still waiting to hear on those...so I start reading about Sulfa side effects...bleeding gums and messing with your blood...hmm....his dentist says it's not his teeth or gum disease...has a healthy dental record...could all these side effects be from the Sulfa? Anyone else have these issues? Here he thought he was having another flare and maybe it's the meds itself causing these other side effects?

If your hubby is allergic to sulfa then I can see why he is having those side effects. I am taking Sulfasalazine 4 pills, twice a day and it has been a huge help to me, particularly for joint and body aches ... but I have no issues with sulfa. Has your hubby been on any other type of UC drugs like Asacol, Lialda, Colozal, Humira, etc.? He just may need to switch drugs ... I would not chance NOT taking any though. Even when all is better, a maintenance dose of medication is best to maintain remission.

what is his platlet count on retest? Too low can cause dangerous bleeding; does he have any tiny red spots on his skin?
I don't know of a connection to meds or UC, but could be. In any case I would want to see a hematologist.

His pathology came back clear and his platelets were back to normal levels she said on Monday when she called. She's giving him the clear to stop all medication. He's been off a week and the urgency, soft stool and bleeding gums are GONE...so the sulfa was making things worse and not needed this whole time. She thinks his first diagnosis was maybe caused by too much ibuprofin because at the time he was eating them left and right due to a fall on the tailbone and was in pain for weeks and just kept taking them. She said that can mimic the symptoms...or it was a bacterial infection. He's been symptom free ever since his first scope back in January 2011. He cleared his flare or whatever it was and even stopped the meds for the summer. The only reason he went back on them was because he was having the itchiness and thought that was a sign and a little bleeding, which turns out it was from the irritation when wiping, not coming out in his stool/colon...so we'll see how it goes. He just assumed when he saw a little pink that it was coming from his colon, which it wasn't. This was the 2nd totally clear colonoscopy he's had since his initial first episode. Even his other doc said after the first one that it's rare to see it so clear after a first flare and maybe he misdiagnosed and it could have been a bacterial issue which mimics it as well. Keeping our fingers crossed but glad to know it was the meds causing his bleeding gums. It was TERRIBLE...he couldn't even softly brush his teeth and they'd start bleeding. I'd rather him go a year or so with zero meds and have it flare vs being miserable on meds and not really sure if you have UC. We'll see what happens I guess.

I have been down this road myself. No pharmaceuticals help EVER, nor do western doctors, I'm sorry to say. They quite simply don't understand it at all. I cured myself of it completely mainly because I am really stubborn and refused to be sick or have my colon removed.

I did figure it out and recovered though it took me almost ten years to fully figure out why I had that problem. At my worst I thought I was going to die. A few key things I learned stopped the bleeding and allowed me to gain back over 60lbs of muscle.

Id love to help you with some key pointers if you're open to it. I'm not a doctor and I have nothing to sell you. I've just been down that path and know how horrible it is! I'm just a but of an eccentric guy, I'll admit.

If you're interested Id have some questions about diet, then I will give a few recommendations (that you can research on your own to validate) to stabilize him, gain some initial healing. Then assess what specifically to do to regain strength and make sure this NEVER happens again. It's not as hard as the doctors make it seem.

A very simplified way to look at this disease is that it is sort of the opposite of acid reflux. The effects are massive and the root of the problem is in functional imbalance between the spleen, liver and stomach. There is a long explanation here that I can't type on my iPhone ;) but in essence, once he's stabilized, there will be some dietary changes that will likely need to be permanent. But he'll probably feel better than ever.

Most of what I have to offer you should research to educate and understand the whys as well as because western doctors most likely think what I have to say is nonsense. But if O had listened to them I'd be dead or missing my colon.

Let me know. All the best!

Onward,

Matt