Been a long time since I was on here!

Uhh feeling so discouraged today. Started getting left sided stabbing pain again. It had been gone the past 2 weeks I think. My middle abdominal pain has never went away and is still going strong. Just dropped to 15 mg of prednisone yesterday. I just wanna cry. I had a feeling Rinvoq was not working yet since I have been so sick the whole time taking it. I am worried that I will be one of the non responders. If I start to see blood again and my BM’s go up then I will assume that it isn’t cutting it. I see my nurse on Wednesday for a virtual appt. Just so annoyed. I drop to 30 mg of Rinvoq on Wednesday this week. Does anyone know if Rinvoq can take a while to kick in for some people or has it for any of you- like longer than the your other meds? I am on day 54. I responded so quickly to Remicade and Simponi (overnight relief and pain was gone) so I am not used to how slow this one works. I am shocked it our “fastest” medicine we have! This just sucks.

Tonito, my nurses said staying at 45 mg for longer than 8 weeks isn’t an option. I do see her again Wednesday but it sounds like this is the rule at my Gi office’s and at Rinvoq. The nurse from Rinvoq said she has never had a patient stay at 45 mg longer because it is too dangerous. I am still on 45 mg for another day and then I drop to 30 mg. I still don’t know if it has kicked in so it could be prednisone that has helped me. I guess we will see what happens on Wednesday when I go down to 30 mg. I assume my only other option right now is Entyvio since that is what my doctor said we would do if Simponi stopped working but then Rinvoq came out and he changed his tune. Didn’t even bring up Entyvio as an option. It was between Skyrizi (sp?), Xeljanz and Rinvoq.

Rinvoq is more targeted than xeljanz which means it may be more effective with lower risk of side effects. There is limited evidence for the first of these and I've yet to see evidence for the latter.

Entyvio is slow working, so not the best choice in an emergency situation.

Hey Banana Girl, great to see an update from you. Sorry to hear about the pain you are suffering! I wonder what the colonoscopy will reveal. I agree with following the low fibre diet to try to reduce symptoms. Hope you don't have to do that for long. I find when I am doing that, my gas output is vastly reduced so I wonder what is going on there. I have never been on prednisone (fought with my GI to avoid it, and who knows if she even still wants me as a patient anymore but I'm letting that dog lie for now), so I have no idea if that's what is causing it.

If you have copious amounts of gas, could that be causing some of the pain? When I have a crazy amount of gas (the worst time was when I was experimenting with probiotics), I was also suffering intense pain. Stopped the probiotics, pain ended, gas went down to normal amounts. I don't think you are taking probiotics right now, so I'm not suggesting that as the cause, just speculating about a possible link between the pain and the gas.

Serenity Now, I can’t believe you haven’t had to take prednisone. That is awesome and I am so jealous. I don’t think it is gas causing the pain. It is very specific and started in September of last year right after my birthday. I went out and had a lot of food that I dont normally eat and felt bad. That is when the pain started. It is to the left of my belly button about 2 inches up. It has been constant ever since and none of the steroids or my biologics have relieved it. I was on Culturelle when I got out of the hospital in April but stopped it about 2-3 weeks ago to see if my gas would lessen up. So far it hasn’t but maybe Rinvoq causes gas too. Idk honestly. Either way, it just sucks. My bf and I have separate bedrooms and he actually said he thought I died one night because the smell seeped out into the hallway when he was getting some water. I’m like wow haha I didn’t realize it was THAT bad.

Momto2boys thank you, girl!! Yeah it could be partly from gas but I just have this feeling it is something else. It has been going on for so long now. Like could it be a patch of inflammation that just wont heal? Does this happen?

Were you put on antibiotics after the Ct? Just curious since it said suspected abscess or infection.

I had a suspected abscess about a year ago from diverticulitis. I was on oral antibiotics for a couple of days and then got a low grade fever. Dr put me in hospital at that point for 2 days of iv antibiotics. But complete healing from an abscess can take awhile.

Not sure a scope can see an abscess. Usually that is shown on a CT scan where they can see stuff (gas?) escaping from the colon. Don’t quote me on that — it’s what I recall them saying from my CT

Flowers what does a diverticulitis abscess feel like? Can you tell a difference between that and UC symptoms? I wasn’t put on any antibiotics because all my stool tests were negative for the infections they were testing. They must have checked me 4 times for about 10-12 different things.

Serenity Now my bf is definitely sensitive to smells but even that was like a slap in the face haha but yeah, it feels like something died in my colon and that is what I am farting out. My 2 month bloodwork showed normal inflammation levels so I just dont know. I feel like an abscess would put off bad smells but wouldn't that have my inflammation levels really high? My wbc count was super low when they check it last time too at the beginning of May. Just so weird. I hate not know what is going on. I’d much rather have a definitive diagnosis so I can be proactive about it. I am for once excited about my colonoscopy but hope its nothing too bad/unfixable.

My grandmother who had Crohn's had an ostomy from diverticular disease. She lost a couple of feet of her small bowel to CD and more than half of her colon to DD. Definitely something to watch out for.

I can tell the difference between DT and UC (usually) by this:

UC is more crampy pain that comes and goes in wave-like pains. Usually diarrhea with mucus. Usually more left sided. Very weak and tired

DT doesn’t give diarrhea usually. Pain is more gnawing and constant (not in “waves”). Generally feel really bad. When I had the micro perforation though the pain went to lower left side and was constant like I had an ice pick in my gut. Also can run a low grade temp. But yes usually WBC will be elevated.

Darn. I did not know diverticulitis causes as many issues as UC does, especially all the ostomies. Wouldn't that just be my luck that I have somehow kept my colon all these years when my doctors would fight me about taking it out from my UC. I don’t wanna get surgery over this so I hope that isn’t the case for me. I know my WBC is so low from prednisone and Rinvoq but I do not have a fever anymore (it was a low grade one for a few months in my flare). The pain is stabby and I know it is there all the time. My UC pain hurts a lot worse for me though in general- like throwing up from the pain because it comes in horrible waves and it so crampy. This current pain has just been more constant but not as severe. Its not like when I have to poop and then it goes away. It just stays all the time so I am always aware of it just like Flowers described her pain.

Old mike, I dont have c diff thankfully but I am toughing it out!!

Clo, it sounds like you have been through a lot with both diseases. I am unsure of the CT honestly. I had it done in an ER but this ER doctor didn’t know me at all. It was my first time at this one. He didn’t mention antibiotics at all, just steroids and Levsin (I think is the name). Have you had surgery from the diverticulitis? How do you treat it without surgery? Is it something there are medications for like we have?

Diverticular disease can really suck. I’ve already had 8 inches of colon removed in a resection. When I had the micro perforation I had surgeons hovering over me the whole hospital stay. (Surgeons just love to operate!) my next step is a colostomy. Because of my age a j pouch is not an option I was told. Not that I’m THAT old! Apparently I’m the only one who thinks so. 🤣. Luckily I haven’t had another infection since that one. As long as I only have them once a year I think I can manage. It’s been about a year and a half now I think. I’m very careful to not get constipated and take Metamucil regularly. And I try to keep antibiotics around as it’s important to nip those attacks in the bud.

Diverticulosis pockets can be seen in scopes but small perforations are usually diagnosed from CT scans with contrast where they can see the trails of stuff spewing out from the bowel.

Re my micro perforation — it started out as a “normal” diverticulitis episode. Called the dr and he sent in a prescription for me. 2 days later I started feeling worse and ran a low grade fever with the stabbing pain in the left. It was unusual for me to run a fever and especially after 2 days of antibiotics. So dr sent me to get a CT scan the next morning. When he called that same afternoon I said to myself UH OH. He sent me immediately to the ER and called ahead for me with his PA waiting for me. I did have to stay in the ER all night til they found me a room the next morning. I was there for 2 days with IV antibiotics and then sent home with a prescription for another 10 days. It does heal eventually. Just takes time. They don’t like to mess around with perforations. Because they can get bad really quick.

The problem I run into is they always want to give me flagyl and I refuse to take any more of that. I don’t react well to it at all. If it’s in an IV I’m fine but running it through my GI tract makes me so ill I can’t eat and for some reason it literally makes me crazy. Hyper emotional and depressed. I always have to fight the dr over it. I KNOW it’s the best med and it is supposed to prevent c.diff. But I won’t take it. Unless you put me in the hospital with an IV.

Anyway sorry BG. Not trying to hijack your thread. Hope you’re able to get off the prednisone. Hoping the rinvoq is just taking longer for you. If I recall, some people said xeljanz worked really quickly but I think it took awhile for Sara to get to remission on it.