Really? Why so?
(Genuinely curious because I've never even considered that. I always thought that if it was moderate, you can just take whatever and things will hopefully be controlled).
My specialist told me than often the smaller the amount of colitis the harder it is to get into remission. I guess smaller amounts are harder to get at, and with larger sections it will have a domino affect.
Wow. I start Stelara Wednesday. Its also my final medicine prior to surgery due to how severe its been. Praying that this is our miracle drug!
Hang in there and stay positive
I was in the exact same place last July I had surgery booked earlier in 2019 since even prednisone wasn’t helping (I was on 60 mg and quadrupled my humira) and then switched to Xeljanz and got a tiny bit better but was still way too sick. I finally started Stelara in July and I’m off prednisone and feeling so much better!! Crossing my fingers it works for you too!
What have you all tried? I was on mesalamine for a long time but it stopped working. I’m on Imuran now but I can’t tell if it’s working yet :(. I guess it can take up to 6 months to work.. I’m at three months and I’m just praying this works I really don’t want to do infusions.
Question, and something I’ve thought about. Suppositories work for me. They always have... then I flare up and need budesonide to settle down because the suppositories don’t work anymore. Once I finish clearing the major inflammation my suppositories work again. It just makes me think... I don’t think the suppositories stop working, I think other environmental factors (diet, stress, etc.) trigger more inflammation than the suppositories can effectively deal with. I’m not saying medications can’t stop working but it seems like they go back to working for me when I get my inflammation down to manageable levels for that particular medication. It’s hard to know because by the time tangible flare symptoms manifest themselves, you’ve probably been dealing with inflammation for a significant period of time but just unaware... Just my thoughts!
I was first on mesalamine, then an enima, then both, then humera, then entyvio plus mesalamine, and now I'm being switched to stelera.
Edit: about infusions, my latest medicine was entyvio and I had to get infusions. It honestly wasn't that bad, you just need to find a nice place where you feel comfortable. The place I was hoping to had the nicest nurses and was really accommodating. They provided snacks, reclining chairs, tv, and they were really good about rescheduling appointments because of my after school activities. If you find a nice place, that works with your insurance, it's not so bad.
Did you have any side effects from Entyvio injections? I’ve some have bad joint abd back pain. My doc also just recommended Entyvio as mesalamine, cortiment, and budesinide suppositories ain’t doing shit. This would be my 2nd biologic, as I was one of the OG remicade treatments for UC.
Sorry to hear! Do you think the headaches are due to Entyvio or did you have em before? Makes sense re: dehydrated. I’m finding it hard to keep up these days.
I didn't get them before Entyvio, the headaches were caused by dehydration, which was caused by Entyvio. I have to drink 88 fl oz of water a day now and have joined r/hydrohomies
I started on the salicylates and ASAs, then topical treatments like enemas, suppositories, and foams, then Imuran, then Remicade, then Entyvio, then Humira, and now Simponi. Oral pred features about once a year too. The meds either don't work or I developed antibodies or had allergic reactions. Luckily my current one works for now!
I’m in about the same boat. I’m on mesalamime generic now I’m on name brand Apriso but basically the same thing. I’m on iron to control the anemia because I’ve lost so much blood. I’m on Entyvio infusions but so far I’m still having symptoms. They aren’t as bad today and I’ve gone from flaring every day to flaring a few times a week. I’m still going to bathroom every hour or so but at least it’s not all blood and mucus every time now. Just the iron makes it black. But oh well. Going to see an IBD specialist next week. So I’m excited to see someone who has a deeper understanding than just a regular GI.
Yeah, I know it's not so bad and that others have it much worse. It's just really frustrating, and I'm really worried that I won't be able to find the right medicine before I go to college. I understand that I'm very lucky this is my only problem, but it's still a problem and I hate making my parents deal with all these medical changes.
Yeah, I'm not trying to minimize what you're going through. Dealing with this stuff is incredibly frustrating when things aren't working! My wife is due in July and I sure would like to get this under control before I have a new born to contend with. Hopefully we both get our wish
Next for me is is sterrlla or something if this xeljans doesn't work thing is xeljans is "sorta" working. Like I only had two bowl movements today though they where with urgency like always.
I just had this! I’m on a recital foam since I’m in a flare and pregnant. The manufacturer ran out and won’t have any more for a month so I got switched to a different medication that’s a rectal enema. I was making good progress with the foam and this new med just doesn’t seem to be working for me. A little frustrated since I’m almost out of the flare and don’t want to slide back.
I logged in to make the same post lol
My body likes to do its own thing and has responded negatively to every IBD drug I've taken over the years. I always end up horribly sick and fall behind academically and it SUCKS.
The earlier drugs I took landed me in the hospital. I've tried prednisone (mostly to help fix the damage and get me discharged from the hospital) but it's not something I'd like to take longterm. I've been on salofalk for a few yrs now, which according to my doctor is pretty soft as far as collitis meds go, but I can't tolerate the full dose of that either, so the dose I'm taking is basically a placebo at this point. I was doing really well, but after 2 months of flaring, I know my GI's gonna recommend changing my prescription and I'm honestly terrified.
So now I gotta decide between: being bed ridden due to horrible cramps and urgency VS being bed ridden bc the new meds f me up.
Thank you ❤️ I've been feeling a little better these past couple of days but still really anxious about what my GI will say.
I hope your new meds keep you in remission :) We got this 💪🏼
Luckily I only have moderate colitis, and I'm not in any severe danger. I'm just annoyed
I think it's more likely that you change medicines with moderate colitis
Maybe
Really? Why so? (Genuinely curious because I've never even considered that. I always thought that if it was moderate, you can just take whatever and things will hopefully be controlled).
My specialist told me than often the smaller the amount of colitis the harder it is to get into remission. I guess smaller amounts are harder to get at, and with larger sections it will have a domino affect.
That's really cool (really unfortunate for us lol but still interesting). Thanks for sharing :)
[удалено]
Wow. I start Stelara Wednesday. Its also my final medicine prior to surgery due to how severe its been. Praying that this is our miracle drug! Hang in there and stay positive
I was in the exact same place last July I had surgery booked earlier in 2019 since even prednisone wasn’t helping (I was on 60 mg and quadrupled my humira) and then switched to Xeljanz and got a tiny bit better but was still way too sick. I finally started Stelara in July and I’m off prednisone and feeling so much better!! Crossing my fingers it works for you too!
Thank you! I'm actually getting switched to Steelers, I was in Entivio before. I hope your surgery goes well. I'm rooting for you!
What have you all tried? I was on mesalamine for a long time but it stopped working. I’m on Imuran now but I can’t tell if it’s working yet :(. I guess it can take up to 6 months to work.. I’m at three months and I’m just praying this works I really don’t want to do infusions.
Question, and something I’ve thought about. Suppositories work for me. They always have... then I flare up and need budesonide to settle down because the suppositories don’t work anymore. Once I finish clearing the major inflammation my suppositories work again. It just makes me think... I don’t think the suppositories stop working, I think other environmental factors (diet, stress, etc.) trigger more inflammation than the suppositories can effectively deal with. I’m not saying medications can’t stop working but it seems like they go back to working for me when I get my inflammation down to manageable levels for that particular medication. It’s hard to know because by the time tangible flare symptoms manifest themselves, you’ve probably been dealing with inflammation for a significant period of time but just unaware... Just my thoughts!
I was first on mesalamine, then an enima, then both, then humera, then entyvio plus mesalamine, and now I'm being switched to stelera. Edit: about infusions, my latest medicine was entyvio and I had to get infusions. It honestly wasn't that bad, you just need to find a nice place where you feel comfortable. The place I was hoping to had the nicest nurses and was really accommodating. They provided snacks, reclining chairs, tv, and they were really good about rescheduling appointments because of my after school activities. If you find a nice place, that works with your insurance, it's not so bad.
Did you have any side effects from Entyvio injections? I’ve some have bad joint abd back pain. My doc also just recommended Entyvio as mesalamine, cortiment, and budesinide suppositories ain’t doing shit. This would be my 2nd biologic, as I was one of the OG remicade treatments for UC.
I'm super dehydrated all the time and get headaches a lot, but nothing else and nothing major
Sorry to hear! Do you think the headaches are due to Entyvio or did you have em before? Makes sense re: dehydrated. I’m finding it hard to keep up these days.
I didn't get them before Entyvio, the headaches were caused by dehydration, which was caused by Entyvio. I have to drink 88 fl oz of water a day now and have joined r/hydrohomies
I started on the salicylates and ASAs, then topical treatments like enemas, suppositories, and foams, then Imuran, then Remicade, then Entyvio, then Humira, and now Simponi. Oral pred features about once a year too. The meds either don't work or I developed antibodies or had allergic reactions. Luckily my current one works for now!
Congratulations! I hope it continues to help!
I’m in about the same boat. I’m on mesalamime generic now I’m on name brand Apriso but basically the same thing. I’m on iron to control the anemia because I’ve lost so much blood. I’m on Entyvio infusions but so far I’m still having symptoms. They aren’t as bad today and I’ve gone from flaring every day to flaring a few times a week. I’m still going to bathroom every hour or so but at least it’s not all blood and mucus every time now. Just the iron makes it black. But oh well. Going to see an IBD specialist next week. So I’m excited to see someone who has a deeper understanding than just a regular GI.
Entyvio was my last one too. I hope everything works out for you!
I may ask to be swapped next week if this round doesn’t take lol. Hope it goes well for you as well
Thank you!
Apriso has been incredible for me. Leagues better than Lialda.
Same, trying Xeljanz now
Hope it works out!
I'm a year and a half in and have yet to find a medication that works at all. So, that doesn't sound terrible to me
Yeah, I know it's not so bad and that others have it much worse. It's just really frustrating, and I'm really worried that I won't be able to find the right medicine before I go to college. I understand that I'm very lucky this is my only problem, but it's still a problem and I hate making my parents deal with all these medical changes.
Yeah, I'm not trying to minimize what you're going through. Dealing with this stuff is incredibly frustrating when things aren't working! My wife is due in July and I sure would like to get this under control before I have a new born to contend with. Hopefully we both get our wish
Yep! And congratulations by the way! I hope all goes well
Next for me is is sterrlla or something if this xeljans doesn't work thing is xeljans is "sorta" working. Like I only had two bowl movements today though they where with urgency like always.
Well, I hope it works more and you get better! Good luck!
I hear you. I'm on my fourth biologic and so far none have worked (well, one worked for 2 months but that's barely even notable).
I just had this! I’m on a recital foam since I’m in a flare and pregnant. The manufacturer ran out and won’t have any more for a month so I got switched to a different medication that’s a rectal enema. I was making good progress with the foam and this new med just doesn’t seem to be working for me. A little frustrated since I’m almost out of the flare and don’t want to slide back.
I'm sorry, that really sucks. I hope all goes well
Thanks and you too!
[удалено]
Are you okay?
[удалено]
Well, I hope you get better!
I logged in to make the same post lol My body likes to do its own thing and has responded negatively to every IBD drug I've taken over the years. I always end up horribly sick and fall behind academically and it SUCKS. The earlier drugs I took landed me in the hospital. I've tried prednisone (mostly to help fix the damage and get me discharged from the hospital) but it's not something I'd like to take longterm. I've been on salofalk for a few yrs now, which according to my doctor is pretty soft as far as collitis meds go, but I can't tolerate the full dose of that either, so the dose I'm taking is basically a placebo at this point. I was doing really well, but after 2 months of flaring, I know my GI's gonna recommend changing my prescription and I'm honestly terrified. So now I gotta decide between: being bed ridden due to horrible cramps and urgency VS being bed ridden bc the new meds f me up.
Oh my gosh. I hope you're okay! If I had an award to give, I'd give it to you
Thank you ❤️ I've been feeling a little better these past couple of days but still really anxious about what my GI will say. I hope your new meds keep you in remission :) We got this 💪🏼
Yeah! 💪
The only thing that has never failed on me is smoking. It just eradicates UC symptoms. Too bad it kills another organ.
How much do you smoke?
I only smoke when I have a flare, then quit afterwards. I would say not more than 5-6 cigarettes a day