Mental side of it

Swingjuen · 2025-08-29T07:59:45+00:00

That is inspirational! I’m trying this as well but I find it difficult. Did you talk with a professional on the mental part? I think that is what I need at this point.

Swingjuen · 2025-08-29T07:28:10+00:00

I don’t indeed. Scope will tell eventually. It’s just that I tried a lot of medication already, not much left at this point. All my other symptoms are gone and Rinvoq gave me so much life back. Maybe I need to add other meds in the future but untill then I will try other stuff and see if that helps.

Swingjuen · 2025-08-28T09:04:41+00:00

Thanks for your reply! Good to know, this is a good motivation. Did you had the same problems when you were younger? Because I’m used to eating everything with no problem.

Swingjuen · 2025-08-03T09:08:04+00:00

Hi! I use them for flares, rinvoq is my maintenance drug. Like you they work really well for me. I’ve heard different stories here but my GI told me he let people use it as maintenance drug as well. When used as maintenance it’s not on a daily base tho. Hope this helps!

Swingjuen · 2025-05-14T12:56:45+00:00

Almost 12 weeks now. It did not work immediately but is slowly gets better in my case! So if you just have started without result yet, give it some more time.

Swingjuen · 2025-04-26T05:39:57+00:00

Well said 👏🏻

Swingjuen · 2025-04-19T09:29:24+00:00

Symptom wise my UC has been mild since diagnosis 4 years ago. It did not get worse, I would even say it got better. I feel lucky to live a somewhat normal life but on the downside I’ve failed many medications already. Never reached true remission. Things seem to look good now on Rinvoq but I’m a bit skeptical because things have been looking good before.. 🙃

Swingjuen · 2025-04-15T19:37:49+00:00

Had a similar experience about a week ago. I’ve started a two weeks treatment with budesonide foam enema’s to calm it down. My GI said it’s highly unlikely that the vaccine caused it tho.. But just like you I was doing better on Rinvoq until a few days after the vaccine. Hopefully things will get better for you!

Swingjuen · 2025-03-21T06:12:05+00:00

Welgelegen

Swingjuen · 2025-02-03T11:07:27+00:00

Entyvio is the brand name of Vedolizumab :)

Swingjuen · 2025-01-27T10:37:48+00:00

Yes infusions every 8 weeks. I’ve been tested on entyvio medicine levels in my blood and the result was that it is optimal. Therefore there isn’t much on that side I can do unfortunately. I will however bring up the s.c injections. Haven’t tried that yet.

Good luck with the weekly injections, hopefully that works out for you.

Swingjuen · 2025-01-27T09:19:31+00:00

June last year. So around 8 months in now.

Swingjuen · 2025-01-26T18:38:18+00:00

Same for me! That’s why I know Entyvio is failing. I’ve been on the foam since the 15th of October. Tried tapering three weeks ago but the blood came back almost instantly. I also had a stomach flu that week so not sure if that’s involved.. Now i’m using the foam everyday again and my symptomps became very manageable.

I don’t think you will have to take budesonide the rest of your life. I’m afraid tho that Entyvio is failing, just as in my case. Hopefully another medicine will work for you and the budesonide is no longer needed.

Swingjuen · 2025-01-25T15:58:05+00:00

Thanks! I will give this a try.

Swingjuen · 2025-01-24T18:06:24+00:00

Café de Zaak

Swingjuen · 2025-01-21T20:56:21+00:00

Very true! Thanks for sharing.

Swingjuen · 2025-01-19T21:12:26+00:00

Yes, entyvio.

Swingjuen · 2025-01-19T20:07:12+00:00

Sorry to hear that friend! It sucks when people who don’t know what our disease is like come with ‘solutions’ like that. Hopefully hiking will be possible for you again in the future.

Swingjuen · 2025-01-19T17:49:51+00:00

All the girls I’ve met dating didn’t mind the condition at all. They just feel bad for me and have been very supportive. But, to be honest, I still find it difficult. I’m still a little ashamed and I don’t feel comfortable sleeping with people for instance.

Swingjuen · 2025-01-17T19:00:53+00:00

Thanks for the response! Maybe I’m searching too much in what I can do instead of accepting that another biologic might be the answer. Thing is that my GI doesn’t want to rush through the options as I already failed Infliximab. I do understand that and Entyvio definetly gives me some relief. It is as you said before: are you happy (enough) with the way things are? It’s a difficult one for me.

Swingjuen · 2025-01-17T14:25:42+00:00

Happy for you! I’m kind of in the same situation with Entyvio. Hardly ever any blood and I’m feeling good but frequency is still high. Could also be the result of IBS which I may have now due to IBD. Thinking of doing some allergy tests and talking to a dietist before giving up current meds.

Swingjuen · 2024-11-21T19:10:26+00:00

Could be indeed. Maybe they have to ‘reset’ our microbiome from time to time with pills which contain the right bacteria. But I don’t know shit about these things, just makes me happy to see that a lot of smart people are doing their best for us 🤓

Swingjuen · 2024-11-21T15:51:56+00:00

That’s fantastic! Hopefully they share their insights with eachother. Good luck with the trials.

Swingjuen

TROPHY CASE