Been a long time since I was on here!

It has been a while but unfortunately I am back. I was on here a lot from 2010-2014 and from then on was doing better UC wise. I finally got hit with a flare after almost 10 years on simponi! Totally crushing and depressing for me since I got used to not have accidents and urgency. I was going on a lot of car rides and walks and able to not think about pooping while I was out.

Just wanted to say how much this effing sucks and commiserate with you guys. My doctor believes this was brought on by nsaid use. I have severe periods and use nsaids monthly and he thinks it has caught up with me. I get 10/10 period pain so it sucks that I was trying to treat one ailment and now have to deal with UC symptoms, too.

Feel free to comment and tell my about yourself. I haven’t been on here and there are so many people I don’t know.

Joanna from Bethel Park, Pa

Hey Joanna,

Does your GI think that discontinuing NSAIDs will reduce your flare? What IBD treatments are you going to do?

There are great treatments that have been FDA approved over the past 10 years. Simponi never worked for me but Stelara has been pretty effing good for me for 7+ years.

I have been thinking about you often all this time. Whenever I eat a banana or bacon! I was hoping I could "disappear" like you or have success to report like other helpful mentors here (CC, Flowers, Q, poopydoop, ipoop, beave , ks and many others). Entyvio and Remicade lasted a few months. Now trying to reboot Remi with Prednisone and all that. I believe I have aged out of a lot of treatments, but have never been hospitalized, transfused. Keep us updated.

I remember you, also Jano, from your region-- who hasn't posted here for a while, either, so hopefully she's doing well. Sorry that you find yourself flaring after several good years in remission. Can your gyn recommend any alternative to NSAIDS to comfort the period pain? Tylenol is supposedly ok for us, but my gastro says the extra-strength formula should be avoided due to codeine in it that can disrupt the gut. Good luck with your latest gastro consults and getting back in remission ASAP! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

I remember you. I'm sorry you're in a flare again. Do you also have endometriosis? I remember you didn't have your period during flares at all. What's your doc's action plan?

I llHi Joanna, I would love to say welcome back but flaring isn’t very welcome.

I also have horribly heavy periods and have had luck with progesterone. You should try a bio identical cream and see if that helps. It didn’t work for me so I take the mini-pill now. Sadly I am getting to an age where they want me off of it but I am afraid to change things that are working.

I was hoping you disappearing was because you were doing well, I know it was a long road for you to get to remission. Hope you find it again soon.

Hi Joanna...sucks you're back with gut issues. I hope it's something that can be treated quickly. If it is a flare...hopefully a new med will help get it under control. Of course, in the meantime, you could consider mesalamine oral and rectal if you're able to take it.
Are you slated for a c-scope?

Hang tough...hope answers and treatment are soon.
Hugs,
q

Welcome back Bacon Girl but sorry it's due to a flareup. You were a regular poster back then when I was initially diagnosed and I remember learning a lot from you.

Hopefully it's CDIFF, a quicker fix. If not there's more biologics than you can shake a stick at these days. Better than the 2-3 choices a decade ago. Just harder to chose among them.

Standard flare protocol, CDIFF test, Calprotectin, they might ask for another colonoscopy to assess how severe and how extensive the flare up is. You can also ask for a simponi blood test to check it's concentration and whether your immune system formed antibodies against it.

It's so possible it's just a run-of-the-mill flare-up that a short course of prednisone or budesonide can fix, and you go back to simponi as usual.

On the NSAID thing. You can ask your gasteroenterologist or general practitioner doctor about a prescription cox2 inhibitor like celebrex, which is supposed to be safer. Other NSAIDs like ibuprofen/aspirin/Bayer inhibit both cox1 and cox2. The cox1 inhibitor is believed to cause intestinal ulcers. So, a cox2 only inhibitor should in theory be a lot safer. And I'd believe it would be just as effective in treating your menstrual cramps.

Hi BaconGirl. I do remember you well from around 2017 when I joined after my diagnosis. I read tons of people's posts to learn. I haven't posted much over the last few years myself. I did pretty well symptom wise for a while on Stelara. Good thing, because I ended up having brain surgery during that time to remove an almost one inch tumor. I was/am so grateful I wasn't going to the bathroom 6 plus times a day during that! I had a flare that prompted a colonoscopy in October. To both my GI's and my surprise, my colon was moderate to severly inflamed halfway across my transverse colon. Part of what threw us both off is that my symptoms were pretty mild compared to years back in relation to the inflammation. Second, my blood work was pretty good. I got put on Rinvoq, which is working, even though Xeljance only worked for 5 months.

Interestingly, my GI said something at my last appointment while discussing pain relief for possible sacroillitis, he said that the newest studies showed that nsaids were not actually problematic for the gut. I wish I had asked him for references, because I don't know how that compares to the science before, or why he said that. He does try to stay up on the latest studies on all things UC.

My daughter finds some relief from cramps using dicyclomine in conjunction with whatever pain med.

@Sara14 to your comment about tramadol. I have not been offered anything for at home use besides tylenol. I can get opiods in the hospital but nothing strong like that at home. That is why I turn to aleve because it works a little better than tylenol. My partner is going to get me an edible to try for my next period though (if I get it). I tend to lose my period as soon as I flare. I think it is my body’s only kindness towards me haha

Spring wow you have been through hell and back! How are you now? That sounds like such a crap card to be dealt with on top of UC. Do they know why you for a tumor? Do they think it is from the biologics? That is interesting about nsaids then. My Gi team acts like they are the devil for your belly right next to iron pills. If you ever find that research, definitely post it. I am pretty touch when it comes to pain (aren’t we all?) so the fact that I need aleve so badly should tell you what my periods are like. My partner works from home and hears me screaming from pain for the first 2 days of my period. I probably sound like a dying animal in the background of his meetings (and that is with taking aleve haha). Id probably go to the ER if I couldnt take anything.

If I am slow to respond or have to respond to comments at a time, it is only due to being so tired and having to cut a post short to take a crap. So much fun haha luckily, diapers have gotten more attractive in the past 10 years so this has not deterred my partner in the slightest (somehow?). I have a slim fit cheeky version but not by choice. My *** has just grown a lot the past few years.

Funny story real quick but I asked my boyfriend if he could make me rice since I am too tired to cook. He said sure and acted like it was no big thing. I decide to lay down for a while and after an hour, he comes in and says it is destroyed. I’m like “how can you mess up rice? You make fried rice all of the time?” He said “I use microwave rice but I wanted to make you real rice on the stove. I even washed the rice in my popcorn maker cover because we have no strainer.” Anyway, he used up all of my liquid gold (trader joe’s chicken broth-to die for) and burned it so badly that it is glued to one of our only decent pots. He spent like 20 minutes picking out all the burned edges so I could have some of the overcooked middle rice with that lovely burnt flavor we all know and love. The sentiment was sweet but now I am just sad that my broth is gone and I have to pretend to enjoy this gummy rice haha

Welcome back Bacon Girl.... I wish we didn't have to welcome you back. But if someone needs support this is the best place to find it. It seems like many of us intermittently post on here.

On the cramps... I used to have horrible crampy periods. When I developed Crohn's I stopped having periods but we assumed it was menopause. The cramps every month didn't stop though.... And when I asked about them I was told the cramps were probably from my intestines and UC/Crohn's. I was perscribed hycosamine and Tramadol. I didn't think the hycosamine helped at all and I can't take Tramadol. I muddled along for a few years and then started getting recurrent UTIs that antibiotics weren't clearing. I ended up getting estradiol vagina cream. The estrogen helps with the whole vagina/rectum/bladder bio dome. It did wonders for the UTI AND the monthly period cramps went away too.

I'm not complaining, one thing might not have anything to do with the other... But my urogynicologest said she's seen this happen to other UC/Crohn's patients. So I dunno. My PCP is going to run tests on my hormon levels during my next check up so maybe I'll have better information then. It just one of those things that might make a difference for someone else in here too.

I laughed at your rice story.... My husband did that with noodles for me. I ate most of them while contemplating the demise of all my broth too. I didn't know if I should laugh or cry.

I hope you get some answers soon.

Clo

Oh no Bacon Girl, what a story about your boyfriend trying to cook you rice. Should be an easy task, right?? I appreciate when my husband decides to cook a meal. He is actually a pretty good cook, but he is very ambitious with what he cooks. He doesn't seem to ever want to just cook something basic. His meals usually turn out (not always) but somehow when he cooks he uses every single pan/pot/utensil we own. The stovetop needs scrubbing afterwards, the oven needs cleaning, the floor needs a mopping, and I am cleaning all the pots and pans afterwards for hours. I try not to complain but... geez. Next time I need a break, bring me takeout or just let me cook a simple meal.

I went digging for studies to back up what my GI said. Beave a while back posted something similar, so I figured it had to be findable. I found two links. I still need to read the more detailed first link one more time slowly as I can't say I understand it just yet. I did see where they mentioned up to 4 weeks being ok. I took that to mean continuous, so if these new studies are correct, then intermittent or monthly short use would not be an indicator. However, we all know there are outliers for everyone and everything. I kind of bristle at the idea that we do x, and cause a flare, though I know certain things like antibiotics can have effects. And yes, I know we can do positive things too, but so many of us here that are veteran members have more complex cases that often do not respond to things that work for some. I have also come to accept that I will never know for sure exactly all my factors one way or another because we can't be the control group and the test group at the same time.
Hopefully in the misery of flaring back up and the loss that feels like, you are not feeling additional "I caused this." My dad was in remission quite a few years, and then had a pretty bad flare up that resulted in him having a stroke because of dehydration. But, he is back in remission now, and has been for quite some time. I was kind of wondering if I was surgery bound, but thankfully they came out with some new medications for us, and one is currently working.

To answer your question about Biologics and my tumor, no connection. I was told I had it for years, but it finally had gotten big enough to cause symptoms.

Unfortunately for me, I found out yesterday that my possible sacroillitis is probably not that, but a yet to be defined something pressing on a nerve. Go to see my neurosurgeon Monday.

I hate that so many UC treatments are hurry up and wait. I hope you get something relief soon!

https://www.medpagetoday.com/gastroenterology/inflammatoryboweldisease/2616

https://www.uspharmacist.com/article/little-evidence-certain-painkillers-exacerbate-crohns-ulcerative-colitis