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Posted 3/9/2023 11:39 AM (GMT -8)
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!
Posted 3/9/2023 1:25 PM (GMT -8)
Here's an example of the test I'm referring to

https://www.labcorp.com/tests/504563/golimumab-and-anti-golimumab-antibody-i-dose-i-assure-gol

Many labs can order it, LabCorp just used as an example.
Posted 3/11/2023 2:48 PM (GMT -8)
@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.
Posted 3/11/2023 2:54 PM (GMT -8)
@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!
Posted 3/11/2023 5:06 PM (GMT -8)
Similar tests are commonly used for remicade and other biological meds. Simponi is an uncommon med.
Posted 3/12/2023 4:05 AM (GMT -8)
Hi Joanna! It’s Caroline. Sorry to see you here but glad you are getting support. Hoping that things get under control and that you feel better soon! If you have an instant pot, that’s my favorite way to make rice and there’s no way to mess it up. I make it with extra extra water so it makes a yummy congee that is always soothing to me. Bonus if you cook it in some of that good TJs broth!

I have not posted here in forever although I have lurked a bit. I was kind of fumbling along undertreated but managing for a few years with mostly IBS like symptoms and no bleeding, some inflammation on biopsy but good looking scopes. I did several rounds of budesonide and then got hit with a terrible, full on UC flare beginning of 2022. My GI specialist at our IBD clinic was retiring and I was heartbroken to have to change- however, I LOVE my new doctor. I have been in an Entyvio study since June and am in clinical remission! Getting scoped again in June and hoping it looks good with clear biopsies. I would be devastated to go back to living with a flare and I hate you’re dealing with this.
Posted 3/12/2023 10:03 AM (GMT -8)

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)
Posted 3/16/2023 7:05 AM (GMT -8)
Keith and Ipoop I was able to get the Simponi test from my doctor! He said it is not in the Quest system so he had his nurse mail it to my house. Should be here next week. I took my shot yesterday and have not seen any blood today but the diarrhea is still bad.

Caroline!!!!! Oh girl! I am sorry you were flaring so badly but am thrilled entyvio is working for you now. I am glad you have a great doctor now too. I just have a slow cooker here, no instant pot. Sean is going to try again today though. He tried a few days ago and it was crap rice again. He is not the best cook but he is trying for my sake.

This flare is really messing with me. My most active pooping times are always nocturnal hours so I am just up most of the night pooping. I am just not functioning at all. I am taking my diarrhea med before bed and at 6 am but its not working at all. I feel like I am just existing at this point in a constant state of fatigue and pooping. I just lay on the floor of the hallway most of the night so I dont have to keep getting up from bed. It is a depressing way to live. I have been trying to lay down during the day but my neighbor across the street has a tree service cutting down all her damn trees from 10-4 daily. Like how is this my luck??
Posted 3/16/2023 7:26 AM (GMT -8)
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.
Posted 3/16/2023 7:34 AM (GMT -8)
@SerenityNow yeah that is how my flares always are. Its been like this since it started up again a few weeks ago. I have a tiny bathroom and cant fit on the floor so I have my pillows set up in the hallway for comfort. I am just so dizzy at this point. Not sure if its from the bile acid med they gave me, nicotine patch that I restarted or just all the pooping. The room just spins even when I am laying down!
Posted 3/16/2023 8:08 AM (GMT -8)
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!
Posted 3/17/2023 7:04 PM (GMT -8)
Sorry to hear. Those patches can cause diarrhea sometimes when first starting them (they did for me but it went away after a few days...I was quitting smoking). They could definitely be making you dizzy, too. I've spent many nights sleeping on the bathroom floor or trying to sleep in between being on the toilet. Hope you get some relief soon.
Posted 3/18/2023 1:51 AM (GMT -8)
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.
Posted 3/18/2023 5:35 AM (GMT -8)
I’m so sorry you’re going through this! I hope rinvoq works quickly for you so you can get some relief!
Posted 3/18/2023 3:53 PM (GMT -8)
Just make sure to take that test at minimum concentration, just before your next simponi shot is due.
Posted 3/18/2023 5:54 PM (GMT -8)
I'm so sorry you are going thru this.

Don't forget to keep track of your temperature, blood pressure and heart rate during all of this. The diarrhea can mess with your electrolytes, and your heart. On the temp and blood pressure... I went septic in a matter of hours one day and didn't realize it til we checked my blood pressure. So please be careful.

I used to prop my pillows on the vanity and sorta lean on it and doze with the trash can on my lap.

Gosh those were such challenging times. Has your GI prescribed zofran? It helps me alittle. We have a little bathroom that I used to go to so I wouldn't keep everyone awake and I would lay on the floor when leaning on the sink was too hard.

When I was desperate from all the pooping I tried eating marshmallows. (Even before my colostomy) The antidiarrheal meds and marshmallows slowed things down for me some.

I don't have any other advice. I just hope you feel better soon.

Clo
Posted 3/19/2023 1:31 AM (GMT -8)
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!
Posted 3/19/2023 10:03 AM (GMT -8)
Nicotine patches and the gum absolutely destroyed my sleep. They also both gave me the worst nightmares of my life. NRT was a horrible experience for me. I hope you don't have to take steroids either.
Posted 3/20/2023 4:18 PM (GMT -8)
Hey Bacon sorry to see your back,I don't visit too often myself. Back in 2021 a hard tool
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
Posted Today 3:52 AM (GMT -8)
Thanks Old Mike. Glad you are okay now but it sounds like you have been through the ringer! I cant even imagine having UC as long as you have.

So Rinvoq paperwork is being processed and I am starting Entocort today. Pain has increased to the kind that makes you sick to your stomach and getting on the verge of puking but not quite yet. Nicotine isnt helping this time. My nurse said it could take about 2 weeks to get Rinvoq so I should be starting early April. Feels like forever when I am going downhill. Sleep is at a minimum and I am just surviving at this point. I do not know how I did this for 4 years last time. My flare started in 2010 and I wasnt in remission til May 2014. I am shocked I didnt get my colon out back then. Its been like 5 weeks of this and I am already DONE mentally and physically.
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