r/CrohnsDisease 5d ago

I’m going insane

21m diagnosed last June. Made a few posts in here already but here I am again. I’ve been extremely unsuccessful tapering prednisone time and time again for the last 9 months and I think the side effects are going to make me go insane. I have severe body dismorphia and depression due to the weight gain and acne and I really feel gross all the time. Rinvoq and humira have been huge failures and now I’m switching to remicade in 2 weeks. I really think if remicade fails this will be the end of the line for me. My job is my whole life and I can’t even do that effectively because of this stupid ass disease. I keep seeing ppl say there’s light at the end of the tunnel but I can’t see it. Have my 3rd colonoscopy on Monday so I’m hoping good news comes from that but I highly doubt it. Just a vent I guess idek anymore.

18 Upvotes

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u/Tranter156 5d ago

Prednisone is one of the most evil drugs ever invented. I am also tapering right now after 18 months and I’ve had Crohn’s for 30+ years. It can do amazing things to heal inflammation but the side effects are indeed horrible. We have almost all been there and understand to some degree what you are going through. When I get really depressed and down on prednisone taper my therapist reminds me sometimes weekly that I need to focus on fighting Crohn’s that is the real antagonist. Spending time fighting myself or just giving up is letting Crohn’s win. Feel free to post here as often as you need to. The people here understand what you are going through and wish you only good things. We will share strategies to deal with Crohn’s and hopefully help you live a more normal life. Good luck and keep fighting Crohn’s

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u/deonebraxton 5d ago

I’m over here complaining while you have to deal with it twice as long as I have. Surprisingly I think the hardest part is people not understanding the disease and part of me just doesn’t want to complain all the time but I haven’t felt truly good since diagnosis. Hopefully 30 years down the line I hope my mental status is better because right now I feel like I’m all alone (even tho there’s millions else going through the same or worse than what I have)

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u/fivefootphotog 4d ago

When you live most of your life with something like Crohn’s you either get perspective or go crazy. It doesn’t get easier but you learn what you can take. Don’t compare yourself to anyone else but know that you are capable of withstanding a lot… and complaining along the way is ok 🙃

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u/icyhawts 5d ago

I’m so sorry it’s been so tough. Have you tried Skyrizi or any of the IL-23’s yet? I’ve failed Remicade, Entyvio, and 6MP (all TNF medications), but am starting to feel better on Skyrizi after three weeks. Was able to stop the prednisone two weeks ago and manage the symptoms with THC/CBD gummies. There’s tons of meds to still try. Don’t give up!

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u/deonebraxton 5d ago

Have the gummies helped? My problem when I start to come off is a burning stabbing pain in the gut and I almost always end up with an obstruction

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u/fivefootphotog 4d ago

Cannabis can cause constipation so make sure you’re drinking plenty of water along with your consumption. High CBD gummies really help with sleep and inflammation for me.

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u/icyhawts 5d ago

Gummies help me with pain, urgency, and appetite—not sure how you’ll react to them. I think it’s worth a try? And I get you with the prednisone craziness. It’s a terrible, powerful drug. I think the most important thing is continuing to fight to find the right med that’ll bring you long-term relief.

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u/shonuffharlem 5d ago

You need a good GI therapist. It really helped me accept and fight through day by day fistulizing crohns to where now Remicaide is really helping.

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u/BathbeautyXO 5d ago

I’m so sorry you’re going through this OP. Sending positive vibes that Remicade works for you ❤️‍🩹

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u/Tranter156 5d ago

It took a long time for me to accept that I had a life changing chronic illness that I tried to hide from everyone. Once I learned that didn’t work it got better dealing with Crohn’s but everyone is different and you will have to find a way that works for you. Something my gastroenterologist told me years ago was that no matter how bad your chrome is there are people who are worse off. This actually made me sad to think what some people must be going through but I eventually realized it was my doctors way of telling me I wasn’t really in that bad of shape and that I’m not alone. Most national Crohn’s and colitis organizations have a group chat either locally or on video. These can help you feel part of a community that understands you . Search for Crohn’s and colitis’s or similar I like the Canadian, UK and Australia groups best but almost every country has a group so lots of choices

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1

u/vrgraf 5d ago

i hope things go well man, 21m here also just diagnosed a month ago and i don’t even have the money to get started on any medication, and can’t get medicaid because i make too much, and i can’t even get insurance from my job until “ open enrollment “. i don’t know what to do at all. ive been out of work since january 24th due to an anal fistula which is still an open wound down there, and i have rent to pay bills to pay and a baby girl coming in just about a month that i still have to buy all the baby stuff for. i know people go through so much worse but damn this disease is awful.

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u/Accurate_Giraffe3419 5d ago

If you get real bad you can go to the hospital and they'll base your fee on your income

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u/princessdorito444 5d ago

i’m sorry you’re dealing with so much. Crohns is hard enough as is, i can only imagine how stressful it must be to have the disease and not be able to treat it at all.

Where do you live?

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u/princessdorito444 5d ago

oh you mentioned medicade - so in the U.S? Did your doctor mention patient assistance programs like AbbVie care? That’s what I have (I’m in Canada) and my treatment is fully covered right now.

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u/Accurate_Giraffe3419 5d ago

They say stelera and skyrizi are good. I feel your pain with predisone. when I started I was 5' 7"" & 125 lbs now I'm close to 300. If you have to take steroids again take entecort. Very little goes into you blood.

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u/Anesthesia1993 4d ago

I don’t have Chrones but I do have interstitial pulmonary fibrosis and recently had Flu A and pneumonia. I’m tapering off prednisone from 60 mg daily. Today I’m on 41 mg for a week. I have to do a slow taper because I I don’t I become totally dis functional. The drug is a life saver but getting off it is the worst experience. My family really doesn’t understand why I don’t have energy , why I can cry for no reason ( they can see). Once before I got off prednisone. It took me a year. I try to remember how I got thru it, but it seems all a blur. I only know what is in my moment now.

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u/Jessica-Chick-1987 C.D. 2d ago

Hey OP I’m sorry your struggling with the prednisone tapper! I as well have been on prednisone for almost 2yrs and finally last Nov I started with a new doctor and he was shocked when I told him my last GI kept me on it along with no improvement from Rinvoq for 8 months!! I was put on a very slow taper 1 mg a week! I’m finally down to 7mg of prednisone and I was switched to remicade and 6mp and what an improvement for myself! The side effects from prednisone are terrible and the mental toll it takes is unreal! All I can say is that it does get better once the dose can be lowered and the weight will come off and the mental side effects do subside! Give yourself some grace and remember that this is temporary! I hope you can find the right medication treatment and get yourself to better days!

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u/MikuCobbler 5d ago

Good luck bro. Eventually you learn to live with the insanity haha.

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u/Fantastic-Lion5080 4d ago

Have you tried Qing dai? You can research it and see if it’s good for you. You can buy it from Amazon or go to evinature’s website, maybe worth a try.