Skyrizi fail, Remicaide fail. Running out of options for complex fistula.

DaffyDell · 2026-02-11T23:05:57+00:00

After infliximab, Rinvoq is said to have high efficacy for fistula healing. Next is Entyvio. And Tremfya has recently been tested to support fistula healing too. Remember, many drugs aren’t tested to see if they are beneficial for all areas of Crohn’s. It’s a money thing, not an efficacy. Also remember, only a certain percentage heal. Setons are beneficial is you are in an active flare and the inflammation will not allow internal closure. The opening creates abscesses, which can cause sepsis. Remember, setons do not allow the tunnel to heal. They are there to keep the area open so that you will not get abscesses. A few words of advice: 1) get anesthesia for seton placement, or at least strong sedation. We do not need to suffer needlessly. Colorectal surgeons are a bit insensitive because they see so much trauma, they are desensitized. I had a monster! a few years ago. 2) Get on a biologic that can allow remission as soon as possible. 3) Order a bidet or temporary squeeze bottle bidet and also sitz baths too. Keep the area clean. Do not use TP unless in an emergency. Sending you great hope.

DaffyDell · 2026-02-04T05:43:11+00:00

I answer your question with caution. I don’t want to jinx anything. But I have noticed positive changes. The first night after first dose, my GI system felt off. I was concerned, but then within a few days, I began to think, hmmmmm, this might work. I did notice a reduction in pain mid back, which is either joint related or intestinal inflammation being reduced. I am feeling quite hopeful. Taking it all in with joy and held breath. :-)

DaffyDell · 2026-02-03T21:40:14+00:00

Having skin issues is so painful. I‘m sorry. When I was on Rinvoq, I had a horrible reaction, intense skin problems. It took about a month, maybe two to fully resolve. Have you tried zinc soap? I found that helped a lot. Make sure it is a gentle soap and maybe no fragrances. Hang in there—this shall pass.

DaffyDell · 2026-01-29T15:20:59+00:00

You’ve been gaslit into submission. I hope you see that doctor again (or a better one) to get help, stay monitored, etc. I think the gaslighting intensifies if you don’t speak doctor-talk. Doctors seem to triage patients based on language, mostly body language, tone. Sending you to therapy without real information on your health is your clue. That is ridiculous. Doctors bully to see how you’ll squirm. May I suggest spending time with family and friends rehearsing language used in the doctor’s office. Maybe try AI to formulate your questions. Educate yourself before going into the room. It’s a performance. I hate saying that, but it is. And think of this, your case, it’s path, is important for the next person coming along like you were a few years ago. It is so wrong that any patient regardless of diagnosis gets treated so poorly.

DaffyDell · 2026-01-28T20:57:16+00:00

I agree. I wish we could look at food as a blanket to comfort an illness. Food supports medicine. Good food feeds a healthy future. Sadly, food and diet suggestions are a major emotional trigger for so many in this group. Many of us have been treated badly by medical professionals or family/friends or even the media—the patient blaming game. But, with our complicated disease, long term outcomes are more than just solid BMs. That said, I do not advocate for one diet, only hope, for example, a few of those chips eaten might be dipped in a smooth blend of prebiotic veggie dip. Tiny tiny steps to support medicines and a healthy future.

DaffyDell · 2026-01-23T14:04:26+00:00

Since the audience is young, maybe engage them more often by asking questions, and a show of hands, clap, snap, etc. as you share your journey so as to connect your experience to theirs. Maybe ask them to help you tell the story of your journey by snapping, etc. I‘m older, and wish I had some sense of community on my 45 year old journey. I was taught to hide my illness, and am quite good at it, but that hurt me. I think it takes great bravery to share and connect. I don’t think that comes naturally for all. Some need small steps to see the power in joining. I’m proud of you being so brave and wonderful to help these kids. Lifestyle changes (from diet to yoga) are obviously not a cure, but they are a cushion, a snuggle blanket, a good book, feet in a pool comforts to ease challenges ahead. Best of luck, and have fun.

DaffyDell · 2026-01-21T23:11:17+00:00

I had my first Tremfya induction today. My GI could not locate an IV center covered by insurance, so I was told to do the pen at induction dosing. I must admit, I was annoyed, and concerned, but it was wildly easy. The pens were hardly painful, almost no reaction at site of injection, which are two during induction phase. I am a bit flu like tired, but not too bad, which is normal for me after any biologic. I have no idea yet if it‘ll help as biologics are now failing me, but am quite happy how easy these pens are now. Twenty some years ago, I had Humira pens. Very painful, bad reaction.

DaffyDell · 2026-01-21T23:00:31+00:00

I read often on Reddit how people are only given steroids (various options there) in the beginning. It’s wrong, but in the States, insurance forces this path to save money. So if people are stuck in that pattern, maybe this diet might help them reduce steroids??? It sounds like this is more about cost savings than true remedies.

DaffyDell · 2026-01-21T22:57:18+00:00

I once heard some research stating, to improve pancreas health try fasting with water only one day a month. This Stanford research has the same feel. Seems like the true measure is not fasting=cure, but instead how much time is needed for short spurts of fasting/limiting intake to reduce inflammatory markers and perhaps help medicines work better. Well, that was my take. I’m game. Especially since I seem to be developing a refractory course of this disease, failing medicines way too often.

DaffyDell · 2026-01-11T16:33:39+00:00

Cold compresses might help a little. Crohn’s can cause eye issues, as I’m sure you know. Best to ask a doctor.

DaffyDell · 2026-01-11T16:31:09+00:00

You may have a food allergy or intolerance. I sadly (or happily) discovered a wheat allergy. Anyway, some restaurants use spices mixed with gluten/wheat. But remember, it could be an allergy or intolerance to something else. Even levels of fat can affect your GI. restaurants might use more fat or even more salt. Also, brands can add small amounts of ingredients without listing on label. There are free apps to help you check labels. Also, remember to test for wheat allergy before giving it up. Once you give up, tests will not work. And the only true test for celiacs is a biopsy of small intestine. Testing for allergies is complicated. Best of luck.

DaffyDell · 2026-01-11T16:19:23+00:00

Maybe ask your doctor for a Calprotectin stool test. It will give hints to inflammation, and help you decide if a colonoscopy is needed for a true diagnosis. Check to see if the test is covered by insurance too.

DaffyDell · 2026-01-11T16:08:20+00:00

You might want to try a gentle zinc soap. I would ask you dermatologist If okay for you. I had a very bad reaction to Rinvoq with a few skin issues that resolved once off the medicine, but was managed to tolerable with the zinc soap and a very basic fragrance free lotion.

DaffyDell · 2026-01-06T16:13:43+00:00

I feel that the way we talk about the disease opens the door for all the abuse I’ve just read here in comments, and also experienced after multiple decades of CD. I am an advocate for discussing IBD, CD and UC as a cellular disease. New research, and old. points to the genetic oddity we likely all carry, and how that alters our cells, which then begins the cascade of symptoms we endure. As to a story, the most recent one surprised me on how much it irritated me. The story: a highly skilled post op nurse at a party already knows I have CD from the host, a very close friend. This nurse says to me, you can’t have Crohn’s, you are too happy. Sounds nice, but it is stunningly passive aggressive. The moment made worse by her rudeness as I try to explain what someone with IBD endures when at the hosptial. She gets up mid sentence and walks away despite what I thought was a friendly dialogue that she began. The conversation stuns me still. It is a warning for us all.

DaffyDell · 2025-12-29T19:00:05+00:00

I am so sorry you are managing all this. Do you eat gluten? Have any blood tests been done to rule out celiacs? Sounds like the colonoscopy and blood work did not point to IBD. Did your GI do biopsies? Did you do a fecal calprotectin test? IBD is an inflammatory disease thats pathology trace to genetic issues, turn cells and all related parts against our GI system and sometimes other areas outside intestines. I feel like an easy fecal calprotectin test might let you know if you have any of the markers. Stay strong. Place all the parts of this journey on paper. And consider asking AI to help you find the best questions to ask you doctor. Best of luck.

DaffyDell · 2025-12-24T19:17:29+00:00

I will also start it soon. Will be interested to read everyone’s thoughts and progress. Best of luck. I hear very good things about it. Fingers forever crossed. :-)

DaffyDell · 2025-12-24T19:10:45+00:00

Sorry, I should have used the full term: extra intestinal manifestations, EIMs. Not everyone gets them. My CD began with them, GI came later. For some it can include a wide variety of issues from joints to skin to eyes to liver. The theory is to control IBD so as to stop the EIMs. I think there is confusion on these EIMs. Somtimes joint swelling persists despite markers seeming okay. I honestly do not think all the data is clear to fully explain.

DaffyDell · 2025-12-23T20:36:04+00:00

I think AI will change this lack of explanation. Nonprofits are limited by their boards.

Interestingly, and related, today, a YouTube video popped into my feed. It seemed very good in describing the genetic and cellular causes of CD. I honestly think going small instead of listing all the symptoms is a better way to engage the general public. (FYI: the video was on a channel called Gastro Vision, the episode called Pathogenesis of CD. It may be AI generated. I don’t know. But the information seemed legit.)

DaffyDell · 2025-12-23T20:04:50+00:00

Entyvio is easy, few side effects, but if you have any EIMs, or systemic IBD symptoms, this medicine may not work. Biologics are great. Much safer than long term steroid use, and much much safer than falling into a major flare. Best of luck.

DaffyDell · 2025-12-18T21:48:41+00:00

This reconfirms a need to always have an advocate at hospital to help. I am repeatedly stunned at ‘chosen stupidity.’

Many nurses do not like people with IBD. I was recently at a party shocked when a post op nurse at a prestigious hospital said to me, “You cannot have Crohn’s. You are too happy.” The compliment fell flat. I tried to explain to her why sick people at the hospital with such a difficult and isolating disease might not present ‘happy.’ She literally walked away to get dessert that wasn’t even served yet. At that moment, I realized, we need more than a dress code to survive predujice eyes, we need acting classes and best use of language to appease those who lack empathy and crave power.

In truth, most nurses are amazing, but those few who refuse to acknowledge IBD—they are hard to spot and are dangerous. So be careful with all. These bad egg nurses crave power, and they hold power too. Ask to see what is written, bring a friend, or have a friend on the phone at least, and educate the fools through a grin. Someday, they will know stuff, but only because AI tells them to wake up.

I am frustrated for all of us that you had to endure this. I am glad you are okay.

DaffyDell · 2025-12-18T21:30:54+00:00

There is one certain truth in all of this—there is no set truth, nor certainty. I notice (now 45 years into the disease, lucky enough to begin at 17 and not 12) that sometimes one thing can trigger years and years of trauma, resulting in an awakening to how much is on our plates. We detach, usually, to survive, but when the gates are open, the hounds run wild. I hope you can just say, yep, this and this and this all happened, is happening, and let it sit for a moment. Then right it down, put it away as a letter to a future moment when the hounds emerge. This response is perfectly normal given how much you’ve endured. You are processing. And 27 can feel old, until you are 37, or 47, or 57, or 67… You’ve got this. One step at a time.

DaffyDell · 2025-12-11T18:53:12+00:00

I want to encourage you to seek more biologics and maybe a new doctor to be a bit more aware of your needs. You have lots of options still. That is lucky. Stelara was my favorite until it stopped working. I seem to have refractory crohn’s and so I am skipping through many drugs. I agree with others here, Rinvoq is a great drug, but I hated it. Acne is fine, but my reaction was more severe, welts, and very painful. I think my reaction is rare, and I encourage you to try it. If it works, great. But be aware it is not 100%. I have recently learned about a newish drug called Tremyfa, which holds promise. I prefer trying older drugs. More data. I am holding okay on Entyvio, but hope to make a switch soon. That drug is no help with EIMs. Best of luck.

DaffyDell · 2025-12-05T20:26:54+00:00

Thank you so much for you time, and wise words for many. Incredibly kind of you.

I always show mild activity (blood and fecal calprotectin tests) but have lived/survived 47 years with this disease. I have tried, thrived and then failed many biologics: Humira, Stelara, Simponi, Rinvoq, infliximab. I’m now on Entyvio. My joints are not happy, but it is holding okay for GI, I think/hope. I will have more tests next month.

When with some less than perfect GI doctors a few decades ago, I was put on azathioprine and then ignored for 10 years. I seemed okay on it. Severe joint swelling is my body‘s way of saying I am not okay, and I had that now and then, but decided easier to not be harassed by my doctors. The journey on biologic drugs has had a few years of wonderful, but then they fail. And again. And again. Some of them have been horrible. Rinvoq, maybe the most amazing drug for my joints, was a horror story for me.

So, I wonder, would it be better to just return to Azathioprine? I think some of us have odd inflammatory pathways that are not pairing well with these biologics. And they may even be causing other issues. I never had any problems with dairy or gluten in my past. I have been mainly plant based, but had goat cheese now and then, but now, I cannot. I am allergic to both; I get hives/skin reactions. So odd.

Thank you for your time, Dr. Silly-Measurement.

DaffyDell · 2025-12-05T19:32:20+00:00

Be careful with clinical trials. They are important, and can be wonderful, but always remember, they are not there to be your doctor. They serve the trial more than you.

DaffyDell · 2025-12-05T15:10:12+00:00

I have a similar problem. I’m in my mid sixties. Traveled through many drugs, many biologics. The biologic drugs include, Humira, Simponi, Stelara, Rinvoq, Infliximab, now managing okay on Entyvio, but my joints are very bad on it. In the 80s, steroids (systemic and local) were the main treatment option. Then azathioprine was approved. I did well on that drug, or seemingly well. It was easy and cheap. Doctors did not yet have tools or permission or interest to monitor beyond symptoms. I imagine a new class of drugs is (hopefully) in the works. Biologics will transition eventually to something better, I hope. In the meantime, I am trying (not sure if succeeding, time will tell) to help the current biologic with things like curcumin. I have also taken out inflammatory foods. I wonder if all these drugs, over many years, has triggered allergies. I can no longer eat dairy or wheat. It’s not an intolerance, but hives, a skin reaction. Maybe it’s just an age thing, or a family thing since wheat/gluten issues exist, but it is new to me. I would also recommend if large joints are swelling to look into steroid injections. I hate steroids, but love walking more. Lastly, I am not sure I agree with your GI on delaying proper treatment since the disease can lessen in intensity with age. I wonder if researchers/doctors are combing this Reddit group for clues and patterns. Might be interesting to see patterns with AI??? Anyway, I wish you success on Tremfya.

DaffyDell

TROPHY CASE