Been a long time since I was on here!

I've also seen studies saying there is no conclusive evidence that NSAIDs cause issues for those of us with UC. Every time I post that here though, people dont seem to like it so I didnt say anything. I've taken Aleve several times a month for headaches the entire time I've had UC and my GIs have said it's fine. I've also at times taken it much more often. Why would the Aleve take years to make you flare is another question I had. You were fine for 10 years while taking Aleve, right?

Oh, I've messed up rice so many times! It's really easy to do actually, lol. I finally ended up buying a pretty cheap rice cooker last summer and it makes things SO easy!

@clo2014 that is good to know about the vagina cream. I dont regularly see a gyne but was only offered birth control as a form of treatment but I did not want to go down that route. I plan on seeing a new gyne once I get this flare under control but this has to take first place currently. But its the thought that counts with cooking I guess haha Just stay the F away from my broth!

@Serenitynow same story over here girl but I am guilty of this, too. I made those 2 ingredient banana pancakes today and filled the entire sink somehow. Whenever my bf sees the vitamix in the sink, he gives me this murderous look because he knows I am not washing it haha

@CCinPa that is smart. I have arthritis too but would mainly just need it for the period. I try to tough everything else out but the period pain pushes me over a cliff.

@Spring I honestly don’t know if it was the Aleve or not but I guess its an easy thing to blame and it seems like my doctor needs something to blame. I have taken it every month since 2019 when I got my period back. It’s so random that it would all of a sudden do me in now. I feel like it is more likely that Simponi has just fizzled out on me. We have all the bloodwork ready for Rinvoq so I will pull the plug on Simponi if needed. Hoping to God it miraculously works and fixes me right up! Does your dad also have UC and if so, what is he on now? My dad has UC too but it was always mild. He has had one flare in his whole life that steroids and mesalamine fixed. He takes zero meds. Lucky him.

Similar tests are commonly used for remicade and other biological meds. Simponi is an uncommon med.

Bacon Girl said...
@Sara14 I am glad you told me this too though. I like to have both opinions on the matter. I dont feel guilty or anything like I caused this flare just because that would be mean! I am trying to be as nice to myself as possible but will prob not take aleve next month just to be on the safe side. My partner is gonna get me an edible to try and see if that helps at all. Yeah, we probably need a rice cooker but the amount of tiny appliances we have is insane. Lots of them are there staring at me and used like every 2 years haha

@iPoop I told my nurse about this test and she said not once in her 30 year career as a nurse has she ever ordered this test or even heard of it. I kindly asked that she talk to my doctor about it but I doubt it will happen. Thanks for letting me know about it though. I wish I could order my own labs!

I recently did this test for Stelara. I had it done a few years ago for Stelara too. My insurance covered it. When I previously did it for Remicade my insurance didn’t cover it (10+ years ago)

OMG! You have to lay on the hallway floor! That is a pretty extreme flare, I am sorry this is happening. How long is that tree cutting going to go on??? Resting during the day is the only way I got through any of my flares. How are you supposed to recover if you never get to rest?? I hope you get some relief SOON.

Oh that's just awful. You can't even feel relief when you are laying down. I bet it's a combination of all those things. It is also very hard to stay hydrated during a flare. Your electrolytes will be off. Your iron is undoubtedly low. All these things together = a big wallop!

I think it is like 80% the nicotine patches causing the dizziness! I forgot how sick they made me last time. I was on them from maybe Feb 2014 to May 2021. I still had some here so figured I would try them again. Even the 14 mg ones make the room spin so I am staying at 7 mg for a few weeks. Idk how I was on 21 mg for so many years.

Been up all night again. I miss sleep and undoubtedly it will be yard work all day in my neighborhood. I got my fecal calprotectin results and mine is 1,000 (normal is 50 or under). Took Simponi on Wednesday and think I can officially say that it is not working anymore. I was hoping the shot would somehow kick in but my poop doesn’t lie. I will most likely go for all the Rinvoq bloodwork on Monday since I am miserable and don’t want this to get worse. This is still pretty mild compared to my normal flares. I am usually pooping while throwing up into a trash can 30-40 x a day and my worst day was only 11 poops and I haven’t thrown up once. For the record, Cholestipol does absolutely nothing for me. Could not be any less helpful for my diarrhea.

Thanks for listening guys. These are just my thoughts at 5:30 am since I dont think I slept yet and am going a little nutty.

Just make sure to take that test at minimum concentration, just before your next simponi shot is due.

Clo, that is basically where I am at now but the vomiting hasn’t started. Been up all night pooping. Its not nausea that keeps me up but the mucous and urgency and cramps. The cholestipol does not work at all and zofran wont help the diarrhea unfortunately. I can feel my heart rate is fast all of the time so its definitely gone up. Nicotine does that to me. Wish it was even working! Idk how to even function on no sleep. My body is not letting me sleep. It just wants to poop.

Ipoop, my nurse never mentioned this! I have to get it done Monday so it will be 5 days from my shot. Oh well. Its not working so I dont really need it at this point! I will be on Rinvoq way before my next dose of Simponi if my bloodwork is ok to start it.

Sara, it sucks because they took away all of my symptoms last time! Not sure why its not the case this time but I am still using them to avoid steroids. I would have to be on death’s door to use steroids again. The joint pain and insomnia I get with them is insane. I cant go much longer on no sleep.

Flowersgal thank you! I hope it is a success story, too!

Hey Bacon sorry to see your back,I don't visit too often myself. Back in 2021 a hard stool
puntcured my rectum,emergency surgery at 1 AM,was real septic almost took me out real close.
95+% colon left,plus rectal stump. Rectum was falling apart in her hands,16 days in hosp,180K.
But still here after a year. LOL
My surgeon did such a good job,took her a bottle of wine last week.
Hang in there.
Oldmike/Bag Man

Flares are so awful. I hope your rinvoq paperwork goes through quickly and smoothly. And hope rinvoq works for you — quickly.

Thanks Flowersgal. I hope so too! The cost is over twice the cost of Simponi so I hope my insurance approves it.

Hey Sara. I should be ok. Its only been a few weeks on nicotine and I never had withdrawals the first time I got off. It was easy for me thankfully and I have lots of smaller size patches. My PCP said I could go off cold turkey and be fine but I think I tapered for like a month and didn’t notice anything. Entocort is just budesonide so it is used for UC and Crohn’s. I think it is the doctor’s preference. I haven’t heard him mention Uceris before so its probably the Entocort rep got to him first! I wish I could use enemas since that is where most of my inflammation is right now. I just cant hold them in for more than 10 seconds whatsoever.

Poopydoop Interesting! I had no idea but thanks for explaining the mechanisms behind them. I guess I have to trust that my GI knows what is best for my specific case. The end of my ileum is severely scarred due to inflammation from my last long flare and I have no IC valve anymore so absorption for me has always been hard. Every flare I get involves appendicitis so I also have to go on double antibiotics with my usual flare meds. Maybe this is why he prefers it for me? Not sure. He is one of America’s top GI doctors and has Crohn’s disease himself so he spends a ton of time researching treatments. He is pretty famous around here!