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Just so tired. Natural route failed for me.

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Ulcerative Colitis
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Posted 3/11/2023 4:03 PM (GMT 0)
I've spent the last 3 months trying to induce remission without the use of medications. And I've just been getting worse and worse. Today I injected Humira. I'm afraid it won't work this time around, but it's worth a shot.

I'm so so so tired. I'm only 31 but I can barely walk because of an inflamed knee. I can't eat anything without pooping it out literally 10 minutes later. I am just so very tired. I can barely do my job, but I'm grateful that I work remotely. Otherwise there is no way I could work.

My faith is keeping me going, but today has been so very hard. I have no one in this small town where I live, and I don't want to burden my family with all this grief.

Pray that the humira helps get me out of this flare! I am just so darn tired.
Posted 3/11/2023 5:20 PM (GMT 0)
I hope it works for you. Do you have a GI doctor you can reach out to if you haven't already? You may need a course of steroids to help while waiting for Humira to kick in. It sounds like you're pretty ill.
Posted 3/11/2023 6:33 PM (GMT 0)
I can't tell by your post, were you on Humira previously & decided to stop on your own?

You've tried the no medication route & it didn't work, no sense in beating yourself up over needing medication to treat the disease.

Good luck.
Posted 3/11/2023 6:35 PM (GMT 0)
I so remember that feeling of being so ill and tired! I’m sorry the non medication route did not work for you — but not surprised.

Were you on humira and stopped it? Were you in remission? I second Sara to contact your GI. Rusty on here stopped humira and it did not work for him to restart it. But I think he was off for 7-8 months? Or was it remicade? Sorry! Faulty brain reply. ☺️

Don’t lose hope. There are many medications available to us now. Some are finding relief on xeljanz when nothing else worked. And newer ones have just been approved for UC too. But definitely get with a GI soon to discuss options.
Posted 3/11/2023 6:54 PM (GMT 0)
Thanks for the replies! It really helps just to know I'm not the only one struggling, and there are people out there who have gone through the same pain. I've been on Humira for the last 2 years. I stopped taking it 3 months ago because I thought it might be causing an intense pain in my shoulders. The pain in my shoulders went away, but then my knee got inflamed and I started flaring terribly. Every day I would have more bowel movements with blood and I've gotten more and more tired over the last few weeks. I really believe in natural and alternative medicine, and I wanted to give it a good shot, but I realized today that my body is just too darn sick for the alternative route.

I injected a few hours ago and I've been able to eat 2 whole meals without the usual multiple trips to the toilet! Maybe placebo effect, but I am hopeful.

Post Edited (magicbeans) : 3/11/2023 10:59:17 AM (GMT-8)

Posted 3/11/2023 7:02 PM (GMT 0)
I'm scared to take pred again because it makes me really manic. Been on it multiple times in the past 3 years... but if I don't respond to the Humira I'll make an appointment with the gastro. He will undoubtedly put me on pred again.

Hopefully the Humira works. We will see.

Post Edited (magicbeans) : 3/11/2023 11:07:28 AM (GMT-8)

Posted 3/11/2023 7:17 PM (GMT 0)
I totally understand. I hope I never need pred again. I hope the Humira works for you again. You can ask for budesonide instead of pred if that works for you. It did for me sometimes, if I caught a flare really early.
Posted 3/11/2023 9:08 PM (GMT 0)
Was going to chime in with the budesonide advice too: a steroid that’s more gut-specific. It helped me immensely last year when I was in an awful flare that sounds v much like yours. (I tapered off after my Entyvio loading doses.)

I also really prefer natural routes, but I’ve come to think of them as supplementing the biologic—like a dual approach, rather than just one. I figure the curcumin, fish oil, probiotic, vit d, nervous system work, anti-inflammatory diet, acupuncture, and aggressive boundaries around rest are all complementary therapies that likely support my wellbeing but on their own can’t cure me or even keep me fully in remission.

It’s been hard to accept this, but for the moment this modern medicine is an amazing gift.

I also struggle with various pains, and it’s so hard to sort out cause and effect. You’re absolutely not alone. I hope you’re feeling better very soon.
Posted 3/11/2023 9:49 PM (GMT 0)
Thank you, GrittyHope! I am Buddhist and the Buddha said that humans need only four things in order to live a happy and faithful life: food, shelter, clothing, and medicine. I'm starting to accept that it is OK to use medicine! This flare has really made me see that without medicine, I will just bleed and bleed until I waste away. The Buddha said it is necessary to have medicine in order to practice well. I do think that acupuncture, herbs, qigong/yoga/pranayama, and all the other alternative practices do address the energetic body in a way that pharmaceuticals cannot.

Anything that gives respite from this terrible disease is a precious gift. I really hope the Humira works for me!
Posted 3/11/2023 9:51 PM (GMT 0)
Magicbeans I also tried natural methods because i was scared of immunosuppressants and got much more ill. No shame in that, if you didn't try you'd probably always question if it would have worked. You don't necessarily have to take prednisone if you don't want to, but you do need a GI/gastroenterologist on hand to monitor your progress on humira and help you access other drugs as fast as possible if needed. It sounds like you're in a pretty bad shape so I hope you're already in contact with a doctor.
Posted 3/13/2023 1:17 PM (GMT 0)
Update: I have an appointment scheduled with my gastro for this Thursday!

Even better update: I had a solid stool for the first time in an entire month!! I think the Humira is working!

Some background for the curious:
I started taking Humira in December 2020 and stopped taking it January 2023 because I was curious to know if my body could heal on its own. As it turns out, my body CANNOT heal on its own and I have been in a moderate-severe flare for the last 6 weeks or so. I have missed 5 Humira doses (40mg pen biweekly) altogether. I took a double dose of Humira (80mg) this past weekend in an attempt to get a high concentration of the medicine in my body to help resolve the flare more quickly. This was reckless but I already know that Humira is safe in my body, and I had no reactions to my first loading dose, and have never had any other reactions to it.

I'll keep my progress posted here. I'm very curious to know what happens when you skip 5 doses of Humira and then restart.
Posted 3/16/2023 5:04 PM (GMT 0)
Magicbeans hang in there! I, too, tried the natural route many times and only ended up hospitalized every time. I even had a naturopath say to me that I was too sick for natural methods and that it would be irresponsible for her to even attempt to treat me. I compliment my meds with natural stuff like supplements, qigong, meditation but know that supplements and a certain diet aren’t doing a darn thing for my inflammation for UC. It is a brutal truth I had to face a while ago. I had to explain to my boyfriend’s mother about this over the weekend. She has been sending me stuff non stop and saying UC is just a parasite and that all I need is a parasite cleanse plus some ivermectin. I’m like yeah, no haha
Posted 3/17/2023 1:41 PM (GMT 0)
@Bacon Girl, thanks for the support smile
Posted 3/18/2023 11:34 AM (GMT 0)
Update: Only 2 BMs yesterday, down from 7-10 for the past month. The Humira is working smile
Posted 3/18/2023 1:38 PM (GMT 0)
That’s great!
Posted 3/20/2023 9:30 AM (GMT 0)
So glad to hear you are doing better Magic.... As I read your first post, I remembered how I felt at my lowest point of this terrible illness; I lost weight, from 170lbs. down to 140 lbs. I was getting so weak from the bleeding and diarrhea that I begged my gastro doctor to just remove all of my colon that he could. Of course he refused and I began the drug route. I have learned, over many years, that we do not heal ourselves. LOL NEVER give up. If one drug fails, try the next. There are drugs available to stop the symptoms of uc. I hope you continue to do well. Sounds like you are on the right course now. Best of luck to you
Posted 3/20/2023 11:44 PM (GMT 0)
I wanted to chime in and say that I’ve tried many natural meds. I’ve now come to see that natural meds work together with my biologic therapy. I eat paleo, take turmeric, practice yoga, go to acupuncture, AND take Entyvio every 6 weeks. Everything helps. Years ago my acupuncturist told me I was too sick to be treated by natural meds and I needed conventional meds. I see Eastern and Western meds working together. Hope you feel better soon!
Posted 3/27/2023 12:55 PM (GMT 0)
Update March 27, 2023: Doing so much better! It's been 2 weeks since I injected a double dose of Humira, and now I'm back in my usual medication schedule of one shot every 2 weeks.

I am doing WORLD'S better! I can eat pretty much normally, and BMs are down to 2-4 a day unless I eat a trigger food, in which case back up to 7-8. I have been able to do mat Pilates at home, my knee is almost fully healed and has almost full range of motion again, my shoulder pain has diminished, and yesterday I was able to walk about 2 miles!

I still see blood in my stool often, but I'm hoping my next humira dose in 2 weeks will help slow down the bleeding. Getting labs done in 2 weeks as well.
Posted 3/27/2023 3:56 PM (GMT 0)
Nice to see you are feeling better, hopefully improvement will continue.
Posted 3/27/2023 5:49 PM (GMT 0)
🤞🤞🤞
Posted 3/27/2023 8:21 PM (GMT 0)
That's great progress! Glad to hear you are doing better.
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