Sad remission

I have been on Rinvoq about 6 weeks at 45mg. It seem like the people having the most success are person who have not had the condition very long. Although studies show it is good for TNF exposed persons. I was diagnosed in 2000 and have tried multiple biologics with Remicade having the most success.(15yrs) I am seeing some success with Rinvoq but so far not able to drop below 7mg of prednisone. I am hoping i can hang on until dual biologics become the norm or maybe go back to Remicade biosimilar and add Aza. Not really sure at this point.....just hoping for the best.

Post Edited (twinn-burner) : 12/27/2023 8:33:28 AM (GMT-8)

Fighting off UC is relative. If your scope + stool tests now are normal, that's really terrific progress compared to how sick you were earlier in 2023. (Lying on the hall floor overnight to be closer to the throne! Etc.) Of course you feel down it being holiday season, but you still can't eat everything normally nor enjoy all the outside activities. Whether that's due to SIBO or another type of GI tract imbalance, try to think positively that you're on a better track and will find out how to overcome your present digestive issues with the most balanced nutrition you can tolerate at present. How is your appetite? Do you have food cravings for flare-time no-no items? Maybe you still need to think of some stuff as "museum pieces" 'til your gut biome readjusts. A good friend of mine urged me to do that back before I finally achieved remission, and it did help to lift my spirit toward more patience/positivity. Hang in there; you're already a trooper who basically knows the UC ropes. Sending a cyber-hug your way-- Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

BG,

I am so sorry your med is not giving you the remission you had on Remicade.

I don't have experience with other meds... Knock on wood... Remicade is still working for me... (Well... It's my new normal and my doctor says it's remission....)., but I can emphasize with how you feel.

The shingles vaccine has caused some of the other ladies in my support group to go into flares also. Some are changing meds and some are trying to wait it out. I did not get the shingles vaccine after you posted on here and I am so very Thankful that you shared your experience with us... But sad that you are going thru this.

Can you eat any of your "flare foods"? Or have you developed intestinal issues if you eat them? I don't know about others.. but when I go into a "flare" situation I too develop issues with some foods and have to reintroduce them at a later date.... But my core Flare foods... SCD chicken soup, yogurt, cheetos, homemade jerky..... Those remain the same things I can usually eat. (Although this last week I was down to only Cheetos with water or the soup broth....) But the foods that I could previously eat while not in a flare---that group is gone and I have to start completely over with each new flare.

What has your doctor suggested?

Clo

I’m so so sorry you’re going through this, Bacon Girl. I don’t have any experience with this drug, but when I was investigating SIBO a few years ago, I realized there’s a lot to it. It would be good to get more testing if you can.

The other thing I wanted to mention is how research is accruing that associates Covid with gut biome changes, as well as mast cell activation and allergies. A recent study in Asia showed improvement with particular probiotics. It might be worth looking into the Covid connection—if folks with long covid are finding relief with gut microbiome changes, maybe what’s going on for you is a different variable than UC altogether, meaning there are other levers to pull for relief?

@GH I have watched a lot of MCAS videos and I would say 70% of comments are from covid long haulers or vaccine injured people. I have had covid 3-4 times so I am sure that has done some damage too. Long haul every time just enough for me to catch it again. I wasn’t thinking vaccine based until I read all these comments that vaccines can trigger MCAS in people. Do you know the probiotic that is helpful? I am willing to try anything. My skin is a big problem and where a lot of my histamine reactions are showing but I figure all my digestive distress could be histamine related. It is not a widely recognized or treated disorder here so I am doing a lot of research on my own.

OH it has caused me so many issues and probably why I have never felt good in remission. A lot of my notes and hospitalizations even list “suspected Crohn’s Colitis” but then my Colonoscopies always say Ulcerative Colitis. I think it is probably UC since I had the camera pill test a long time ago. Either way, my GI said it isn’t too common but I had severe backwash ileitis of the terminal ileum during this 2010-2014 flare. It kind of wrecked my right side. I had appendicitis 3 times and was always on antibiotics. He said constipation is the enemy of SIBO which is hard since my natural pooping schedule isn’t daily. I have always resisted TPN even at my lowest weights. I hate IVs and dont feel comfortable having one at home. I do think an extended bowel rest would help and I never thought of that until you mentioned TPN. Maybe protein shakes for even a week or so.

OH I had bloodwork this past Thursday and most levels were normal except my WBC is high (a lot of the CBC panel was high though). Also high b-12 and high lipid panel but that is normal for me. Cortisol took a long time to go up for me due to being on prednisone but my levels are finally normal. I had a very hard time with low cortisol after prednisone. Surprisingly, I actually see one of the top GI doctors in the country. That is one reason I am scared of moving. It took years to find him and then get in to see him. I don’t wanna start over with that process and get stuck with someone who isn’t an expert. Any other GI I have seen (mostly in hospital stays) tells me to never go anywhere else which just gives me anxiety now about what is out there. A lot of surrounding states patients come to this clinic because it is so good. The main issue is accessibility. He only sees patients one day a week for appts so the wait list is 8-12 months long. He spends his other days doing hospital rounds, scopes and research. I am at a huge research hospital so the doctors on the IBD team are always doing studies. I am in 4 right now. The other issue is covid just ruined healthcare in my town and the hospital his office is at is now horrible. That time in April when I went there to be admitted and it was a 5 day wait in the ER was third world country bad. So much of that staff is gone there (I was told an entire unit closed) and there aren’t enough nurses now to take care of people. I ended up at a private hospital closeby inpatient so they could treat me and they all asked why I was there if I was seeing the GOAT in IBD at UPMC. It just sucks that his hospital has gone downhill so horribly, OH! I don’t think you could pay me to go there again with how bad the conditions were/are there. His main nurse is also miserable to deal with and always gives contradicting information than the doctor and his PA/CRNP. So yeah. There are definitely downsides to his office but what do you do when all the other GI doctors tell you to stay there? Apparently, my doctor is known for “death’s door” patients and that is why I am with him. The hospital I was at in April inpatient said I wouldn’t even be able to be a patient there-that my condition is out of their scope of practice. Sorry for the rant but we definitely have little access to good IBD doctors here and I am already at the best one in our state so I feel stuck there. It is hard when other doctors are scared to treat you!

OH that is pretty interesting. I remember my Endocrinologist looking at the B 12 levels and said that I must not be absorbing it well if it is all in my bloodstream. She said that is likely based on some other CBC factors and my iron problems but I am not too sure what contributes to it. Either way, I dont take any oral B 12 pills or drink vitamin waters currently. I was on B 12 shots years ago as a vegan because my GI said there was no way I was getting enough in my diet. I eat meat now though. Funny you mention the nutritionist. I have been seeing one at the clinic for many years now but she is very into plant based diets, even for flares. She is super nice but a little strict. We don’t exactly jive on that together since most fiber destroys me. I think it is pretty weird she is the IBD dietician there and wish they had someone who was more accepting of animal proteins. She even recommends plant protein powders for flares. I think plant based is taking over in the medical community in general but after my bad years as a vegan with UC, I know I can’t eat that way for health. It was actually the GI surgeon at that IBD clinic who told me I wouldn’t be able to survive a colectomy because I was so malnourished. He told me to go on TPN for 8 weeks before surgery or to eat some animal protein to get me nourished enough. We even had the surgery date scheduled but then Simponi came out that month and I got on it immediately and did great. I guess I have always been really open to everyone’s information and trying different things to see what works. It’s just funny how even at the same clinic, everyone has totally different views on IBD diets and treatments.

You are correct in that everyone (or many) of your health care providers may have differing opinions.

I had a dietitian that was really pushing a plant based diet for me. I advised her that for some reason plant based threw me into flares or caused obstruction. My Colorectal surgeon even spoke to her about it... Advised I needed low residue with animal protein.

Long story short...I ended up with another obstruction and surgery yet again.

So listen to your gut, and get more input than one person. Things can go terribly wrong very quickly for some people.

That young lady caused such huge issues for me... I coded during surgery and I will never be the same.

UC,

You made me sorta giggle. I usually pressure cook my meats and veges. I splurge right after my Remicade.... But about a week afterwards I start listening to my body.

The young lady that was my dietician and her evil side kick just weren't good listeners. They repeatedly told me how much time they had invested in their field and that they knew what they were doing. I wasn't having issues with an obstruction until after I saw her/them and tried their diet. I was deficient in some things and my hormones had been up and down..so my GI wanted me to see her/them. I had been on a low residue diet for the prior year because we knew there was scar tissue inside the colon...that there had been sudden periods of high inflammation....but I was able to eat regular food with a few canned veges well cooked and pureed. She was adamant that I needed more of a plant based diet and needed to try to incorporate more fresh veges and fruits in my diet. I needed to get away from animal protein. She believed my body would absorb nutrients better... my body would adapt. We started out by adding fresh fruit/veges 3 times a week and I immediately started to have issues. It didn't matter if I steamed, chopped and pureed. I kept calling her and explaining that it was not working for me. She was adamant that it was just my body adjusting. It would get better. Nope.... within 2 months I was having so many issues I started to drink plant based shakes instead of actual food. I was complaining at least 3 times a week. I could feel it building up in spots. My CRS looked at me like I was nuts when I told him..it was a liquid diet by then so nothing should have been "sticking" . The mucus and inflammation just kept getting worse. My fistulas were like fire hoses spewing...It continued until I ended up with an obstruction... Nothing would pass thru. I spent 3 months in the hospital in 2016 with "inflammation" obstructions. My blood work didn't really change...but the mucus was stickier, foul smelling and just every where. The dietician thought it was a flare ..but it didn't feel like a flare. I only "flared" if I ate her diet. She thought I was trying to be "non compliant" and that I'd "adjust". The hospital tried to feed me only her diet or shakes. I refused to eat. I got better, the nausea went away, mucus slowed down.... My CRS sent me home and the next week the dietician would call to get me back on a plant based diet. What a mess. After 4 surgeries we figured out...

For some reason... With plant based foods... They break up but cling to the sides of my colon... Mucus changes to an extra sticky version and adheres more and more of the output to the walls...which in turn causes infections and more inflammation..... each obstruction occurred after we tried to introduce veges or fresh veges back into my diet. Now I eat them with a big helping of Milk of Magnesia and a giant glass of water.... To add in additional issues I've developed allergies to some fruits....bananas, cantaloupe....and others. Some veges...some fresh, some canned... This is a learning curve for my whole medical team.

So you have to trust your gut. Trust what your body is saying .. even when people in the medical field look at you askance.. Every persons body and situation is unique.. even when you are following a "norm".

Clo

Bacon...I'm so sorry you are having problems. I've now been on Rinvoq for one year and from the first week, it has seemed to work like a miracle. NO symptoms. My former GI doctor retired and there are no other gastro doctors close by. I have a new gastro doctor who my former doctor recommended. He is 40 miles away and it scares the heck out of me to have to make the drive IF I should flare in the future. I feel GREAT but the new doc. did blood work and stool sample and informed me that my calprotectin level let him know that I am NOT in a full remission. sheesh He told me to continue on Rinvoq for now. I asked him to please don't 'fix it if it ain't broken'. LOL BUT, I see him again at the end of February and he said he 'may' want to do a colonoscopy. Ohhhh the dread. As for the foods....NOW I can eat anything, but when I was in a flare...like you, I was afraid to get more than a few feet from the 'thunder mug'. I do hate it for you and know your need to 'vent' on here. For my part...vent away; I certainly have in the past. You did make my ears perk up when you mentioned the shingles vaccine. I just got my first Shingrex shot in December!! ALL of my doctors said it would be fine and recommended it. Now, time shall tell. Dang doctors!!! I would think...not a good thing....that if Rinvoq hasn't started working for you by now, maybe the good doctor should be looking at a different drug. But I'm no doctor and I'm not the brightest bulb in the hallway either! I just wish you the best in the near future and hope things will turn around for you. I've been in a similar situation and was about ready to just give up; then my doc would try a different drug and all would be good for a while. Just never give up and feel free to vent all you wish; it keeps us from exploding!

Conquer I am not sure what GI mapping is. My GI runs the typical tests like all the bacteria and viruses and fecal calprotectin. Is this in addition to the regular testing? I am at a normal university hospital and they don’t do any holistic medicine there. I do think the shingles vaccine did something to my gut. I am just not sure how to fix it. Are there supplements you like for this kind of reaction? Even just ones off the top of your head that I can research. I did start on several MCAS supplements based on my own research. I take Quercetin, Vit C, NAC and Curcumin. Those are my daily mast cell stabilizers/glutathione helpers. I am unsure if taking probiotics is good or bad for me due to all my current gas.

Clo that sounds horrible what you went through with all the obstructions and surgeries. I am not sure why the dietitians think we are capable of digesting all these plants! I feel like they need to have UC for a week and see if they can eat the diet they recommend to us. I definitely have the rotten smell you had! My boyfriend said it smells like when someone dies and they poop after (which is obviously sad to hear). I do a lot of slow cooked meats and specific veggies like squashes and mushrooms and then bananas, melons, and avocados. I am not anti plant whatsoever but avoid any cruciferous veggie, salad, green veggies (peas/beans) and whole nuts and seeds. I drink a protein shake every day with banana and peanut butter and some avocado. Sometimes berries but even my blender doesn’t blend down the seeds enough. I also eat a lot of eggs, yogurt and have collagen every day. I am so worried about all the steroids this year and I was diagnosed with osteoporosis when I was 21. I feel like I just had a bad start to this life honestly in this body! I go in for a dexa scan this month and hope there isn't anymore damage!

Geezer do you still take the 30 mg after a year now? I am glad symptom wise you are doing well but it is worrisome if your calprotectin is high. My doctor had me go down to 15 mg because I was having a lot of side effects. I just dropped off my stool test yesterday so we will see if 15 mg is controlling the inflammation enough. My scope in July was fulled healed which seemed insane to me since I was still feeling bad then. I hope you stay feeling ok from the vaccine. I had a reaction the day of so you probably would have noticed something by now.

Poopydoop was it the vegan influencers that made you try it? I saw freelea the bananagirl (hence my old name on here) and david klein’s vegan diet for UC. They sounded so healthy and convincing but I deteriorated eating that way. How do you eat now that you are in remission? Where do you live now?? I have never been to the UK but my really good friend lived in Poland and passed away from Covid in November- only 33 years old. I want to go to see her family/gravesite this year as well as go to another country closeby. I don't think I could handle multiple places but probably 2 that are next door! These are my “health goals” for myself because I want to travel outside of the US and go on a plane (never have before). Just need to fix my body first!!

Hi BC I feel ya!!! I understand every word you wrote.

Could you have yeast issues?

I did Equimax for a year best thing I ever did. Maybe try it in addition to your meds, it might clear an unknown parasite? I’m not sure , just trying to help.

Sending you a hug!!!

I have my scope on Friday.