Frustrated

I called my doctor and he wanted to do a stool test before allowing me to go on prednisone since I went to a camp and that's what seems to have started this whole flare business. Wanted to make sure it wasn't something infectious that I picked up instead of a typical flare. Because in that case, I would need antibiotics, not pred. I'm just so mad at myself for being stubborn and waiting so long to call, stupidly thinking it was just because I didn't poop at all that weekend and that it would pass. It absolutely makes sense though and I'm just so mad at myself for not thinking it could be something like c-diff or whatever.

Got the kit from the hospital and they said it could take a few days to a week to get results. I'm going to Florida on Wednesday. I wanted this all to be resolved and be on something to treat it by then, but it doesn't look like that's going to be the case. And I have an infusion in a week anyways so I feel like it's all kind of pointless now. When I drop off the sample I'm going to ask if there's any way I can expedite the process. Probably not because she said they send it out.

Question abut my stool sample though. I took it home and wanted to do it real quick so I could give it back right away and hopefully get results quickly. But when I went to poop in the "hat" it was mostly blood with a few tiny particles. She gave me 2 bottles to fill up to a certain line and the blood and particles filled it, but is that ok? Like is it ok that it wasn't actually stool? Should I try to go again later and put some poop in it?

I do kind of feel better. Starting last night I felt really good. Had a tiny bit of pain going this morning, but nothing compared to the rest of week. Ate some cereal and still felt really good. Is it possible that I did have something infectious and it's on its way out now? Or is it impossible to get out on its own without medication?

I'm just so frustrated and upset right now. Mostly with myself. And then also with the lab that it takes so long. My regular hospital could have gotten it in like a day, but I'm up at school and it's not realistic to drive 2 hours one way for a poop test. Sorry for the long post. I'm just super bummed right now and wanted to know about the stool test before I gave it back and have them say "sorry this won't work, we need a better sample" and then have to go through it all again and have it take even longer.

That's what I figured. There was a small amount of stool, but I'm eating right now to try and get some more lol. Better too much than not enough.

Yeah I'm pretty sure it's just a flare and not something infectious. If it was wouldn't other people who went to the camp possibly have it too? The test I gave did have some stool in it. I'm not sure what tests my doctor ordered, but the girl at the lab said they sent the samples away, like they didn't do them there so that's probably why it takes so long, not the test itself.

I can't move up this infusion because by the time I get home tomorrow they'll be closed and I leave really early on Wednesday, but I have an infusion as soon as I get back basically. 8am on Monday the 27th. If you're referring to moving up remicade for future infusions, that has crossed my mind. I want to go one more time at 8 weeks and see if I get symptoms again and if I do, get it moved up to 6 or 7 or something. This happened around Christmastime. It wasn't as bad that time and I kind of attributed it to holiday stress, starting school again, and not eating the best. My infusion was also pushed back. Was supposed to be on December 26th, but the nurses were like "you don't REALLY want to come in the day after Christmas do you?" So scheduled it for December 29th, but then we had a family thing so I had it on January 2nd that took care of it and was completely fine for 8 weeks when I had my next infusion on February 27th. Then this started April 13th and my infusion was supposed to be this Friday (the 24th), but since I'll be away it's Monday morning. Should have just gone the day after Christmas and none of this would be a problem! Lol. Would have had an infusion last week and would have been fine.

I'm going to take pred with me just in case my doctor calls and says it's not infectious. That way if I do feel a little crappy I can do something about it. I didn't think an infection like that could work its way out without antibiotics and I truly am feeling better so maybe it was just a flare caused by not pooping for an entire weekend.

Me too! I honestly would be ok with my symptoms going away from Wednesday until Sunday and then coming back full force on Monday. It would suck on Monday, but at least I would have an infusion and it wouldn't ruin my vacation.

I'm going to try and do a low-residue diet as much as I can to give my colon a break. I do know what foods irritate me so I've cut those out for now. Taking DiGize essential oil with me, as well as pred, anti-diarrhea, and Tylenol. I think just having them with me will help me relax a little. I also found a website with yoga positions to help UC so I'm gonna start doing those. Couldn't hurt.

If I start having problems at week 6 or 7 again I'm also gonna talk to my doctor about adding 6MP. We tried Imuran, but it didn't agree with me. 6MP might be different, it might not, but it's worth a shot. I'm just so scared because I've only been on Remicade for 18 months. If it's losing its effectiveness this quickly for me what happens next? I see you're on Entyvio. Did you go through all the meds? Remicade, Humira, Simponi, before getting to Entyvio? I'm not gonna lie, Humira and Simponi kind of scare the s**t out of me. I'm going to do them if it comes to that, but the thought of giving myself a shot still scares me.

Yeah I think I'd be ok on entyvio because it's another infusion. Humira and simponi being administered at home is easier, but actually giving myself the shot is another story lol. Running out of options is scary. I haven't even had UC for very long and it seems like that's where I'm headed. Surgery is always an option though and if it came to that for me, I would be able to accept it I think.

I'm gonna call my GI again tomorrow and tell them that the lab said it could be up to a week and ask if there's anything I can do to help ease symptoms while on my trip. Is it safe to take anti-diarrhea medication if there's a possibility that you have an infection? I feel ok most of the day. It's just when I have to go to the bathroom sometimes, I feel the urge and then I get cramping while I'm going for like 10 minutes or so and then after I feel ok.

My back also hurts like it's sore or something. It feels like period back cramping. Like when you're on your period and your back hurts from the shedding of your uterine lining and then you get diarrhea because of that. At least I do lol. The yoga helped it, but didn't make it go away. I need a massage lol.

Thanks BV. I hope your son feels better too! I'm definitely taking pred with me. Hopefully the lab will get my results really soon so my GI can call me and give me the thumbs up to take it. I kinda wish I hadn't said I went to a camp. I mean it's possible that I have an infection (the food was nasty and the water was hard. Didn't drink the water, but they cooked with it and made lemonade and stuff). I understand wanting to be on the safe side, but I really think it's just a flare.

BV, I think what happened to me is extremely rare (probably under 1% chance). On the positive side, I did manage to get my UC under control with the hospital stay, so maybe it wasn't the worst thing. I wonder if i would still be battling that awful flare up if everything didn't come to a head with the infection.

Methotrexate - immunosuppressant. Although it is prescribed for Crohn's disease, an acquiantance GI doc suggested it is effective for UC too to enhance and keep up efficacy of remicade longer.

I had a c diff test with nothing but blood and mucus in the sample and they said it would be fine.

I was taking 5 pills 2x a week. I don't remember exactly what that adds up to, i think maybe they were 2mg pills or something. I got the infection about 2 months after starting. I was also on prednisone and they say that alone could have been the culprit. Remember, way more people take it with out problems than with. I took 6mp for a few years and I didn't have a lot of problems with that but i wasn't on remicade and prednisone while on 6mp. I do not take any of it anymore - just entyvio and apriso. I guess I could have continued, there is no real proof that mtx was the cause, but looking at any of these medications, they all have these risks written in their prescribing info, so all of them together, increases the risk.

Test came back negative but he just wants me to take immodium when needed until my infusion on Monday and see how I am after that.