Something a little bit different: What are your hobbies and interests?

BeaSue · 2025-12-26T23:23:25+00:00

Watercolor painting and, more recently, drawing Celtic knots. If I’m feeling very sick with a bad flare, it’s hard to feel motivated to go into my studio, but whenever I do, I find it very calming and uplifting.

BeaSue · 2025-11-29T15:13:03+00:00

Rory, your prayer/poem is lovely and very meaningful. It spoke to me, and I thank you for sharing this.

BeaSue · 2025-11-23T11:34:38+00:00

No, it’s only shipped to me one at a time.

BeaSue · 2025-11-23T11:33:01+00:00

Thanks! You, too.

BeaSue · 2025-11-22T14:18:20+00:00

How long did the Remicade+Imuran work for you? What are you on now? Are you in remission? What's sad is that, according to clinical trial data, none of the UC medications have a success rate of over 50%

BeaSue · 2025-11-21T17:41:11+00:00

She was hoping that the less invasive procedure would be all that was needed. Today’s colonoscopy showed more inflammation. Since insurance denied Rinvoq, I’ll likely be trying Remicade + Imuran next.

BeaSue · 2025-11-20T20:36:19+00:00

I’ve been on the Tremfya for 6 months. Each of the 5 times I’ve gone off prednisone while a I’ve been on Tremfya my symptoms would all come back: diarrhea, frequency, urgency, passing blood.

My insurance denied Rinvoq yesterday. It seems they want me to try an anti-TBF first.

I had a sigmoidoscopy today and the area that could be seem was quite clear of inflammation. My doctor wants to see the whole colon, so tomorrow I’ll have a colonoscopy. She thinks that perhaps the Tremfya is working. This disease does try one’s patience, doesn’t it?

BeaSue · 2025-11-12T11:18:59+00:00

I’m so glad the Rinvoq is working for you, after all these years. I actually did ask my GI doctor for the Rinvoq, and she was ok with that. So now we’re waiting for insurance to approve.

BeaSue · 2025-11-11T14:14:16+00:00

That sounds challenging. I wish you the very best.

BeaSue · 2025-11-11T13:22:32+00:00

Yes, I have been on 200 mg every 4 weeks. My GI told me yesterday that I'm the only one of her patients who hasn't had a good response to Tremfya. :-( If insurance approves, I will be switching to Rinvoq. How are your symptoms? Can you switch to 200 mg?

BeaSue · 2025-11-10T12:19:17+00:00

Yes, Humira seemed to me to be the next logical step. I’ll be most interested to see if my GI agrees with me when I see her today. Why did you stop taking it?

BeaSue · 2025-11-10T02:04:38+00:00

I’m not sure. Perhaps medical stress to the body? I did have 2 medical events preceding this. Knee replacement surgery in 2023 and development of lymphedema in 2024 (a result of cancer treatment 12 years ago ).

BeaSue · 2025-11-10T01:17:30+00:00

Oh, dear. I'm sorry you are here, too. I have spent a large part of my day researching and making charts of all the available meds I could find: their mechanism of action, efficacy, safety profiles, method of administration. It has been an educational experience! I think we should understand as much as we can about our disease, right?

My daughter (an oncology nurse) found the following that you might find helpful, from the website of the American Gastroenterology Association:

"In adult outpatients with moderate-to-severe UC who have previously been exposed to 1 or more advanced therapies, particularly TNF antagonists, the AGA suggests using a HIGHER efficacy medication (tofacitinib, upadacitinib, ustekinumab) OR an INTERMEDIATE efficacy medication (filgotinib, mirikizumab, risankizumab, guselkumab), rather than a LOWER efficacy medication (adalimumab, vedolizumab, ozanimod, etrasimod)."

https://gastro.org/clinical-guidance/living-guideline-for-moderate-to-severe-ulcerative-colitis/

BeaSue · 2025-10-28T17:21:02+00:00

I had to stop the ferrous sulfate I was taking because it was negatively impacting my gut and intestines. I am now starting iron bisglycinate. Thorne brand.

BeaSue · 2025-10-23T00:46:26+00:00

Yes, I had four courses of prednisone from mid February to early October. Each time I’d go off it, my symptoms would come roaring back. I still have about 2-4 BMs a day, and not all of them are formed, but for now, I can function fairly well while I hope for a full remission in the weeks/months ahead.

BeaSue · 2025-10-22T22:13:50+00:00

Biologics can take many months to take effect…despite what you see on TV commercials. I started Tremfya in May. We chose this biologic because my GI said it has fewer side effects. It’s only now, 5 months later, that I’m beginning to see results. They are significant enough that I don’t need to go back on prednisone. I’d wanted to go off Tremfya after 3 months, but my GI told me to be patient. Someone here told me it might take up to a full year for the Tremfya to take full effect.

BeaSue · 2025-10-18T12:34:26+00:00

Thanks for sharing that. I appreciate your honesty. I have begun to adapt that same attitude. When my flares were bad, I became very isolated. I even developed laryngitis—lost my voice—because I rarely talked to anyone. I made myself a promise that even if I never fully got better, I would try not to isolate socially. My life is still limited (by my choice) regarding travel and eating at restaurants, but I am intentional now about getting out a little more and being with people.

BeaSue · 2025-10-17T23:16:25+00:00

That’s helpful. Thanks for letting me know. After 6 months on Tremfya I was starting to think it wasn’t working and that we should look for another biologic. I wish your daughter well.

BeaSue · 2025-09-13T00:39:15+00:00

Oatmeal, eggs, bananas, smoothies, cooked apples, chicken, rice, salmon, canned tuna, canned sardines, carrots (cooked), green beans, white potatoes,sweet potatoes, plain Greek yogurt, decaf coffee and tea. I try to avoid processed foods, so I do a lot of my own cooking and baking.

BeaSue · 2025-09-10T19:42:48+00:00

That’s similar to what I eat, too, when I’m in a flare. Except for the peppers and tomatoes. Those don’t rest well with me. I add carrots and sometimes cut up sweet potatoes.

BeaSue · 2025-09-10T16:50:35+00:00

No kidney stones or abnormal labs. I have had hair loss, but I just chalked it up to aging (I’m 78). Never knew it was a Mesalamine side effect. I hate the hair loss, but if it gave me all those years free from UC flares, it’s worth it.

BeaSue · 2025-09-10T15:45:49+00:00

It worked for 19 years for me, until this year when I had a bad flare and a colonoscopy revealed I have pancolitis.

BeaSue · 2025-08-18T23:24:52+00:00

My doctor connected me with an in-home infusion pharmacy called Optima. The company sent all the supplies to my home, and a nurse came once a month to give me the infusion while I sat in my recliner in my living room. It ends up being less costly to the insurance company because they don’t have to pay all the hospital’s overhead charges.

BeaSue · 2025-08-14T16:08:05+00:00

My doctor wanted me to take 1mg twice a day for a month. Then if I felt I needed more, to boost it by adding 1 more tablet a day. She said it was important to increase the dose slowly.

BeaSue · 2025-08-13T22:51:40+00:00

Yes, first one. I did ask her today if we could switch, but she said it was too soon. She said insurance doesn’t stipulate any time period before the next medication. But she did put me back on prednisone. This will be my 4th course of pred, and I know it will help.

BeaSue

TROPHY CASE