I have failed almost all my other options (entyvio, infliximab, rinvoq, skyrizi, imuran etc) and my only one left is an S1P modulator. My GI is referring me to a surgeon but I really wanted to ask him if I could try out one of these before that.
So like the title says I'm starting uni this fall (USC!!!). I got admitted last year and had to take a gap year because of a horrible flare, I was hospitalized for quite a while. I was pretty heartbroken cause it was my dream school and I worked so hard to get in, however they were really gracious about the whole situation and let me push my admission to this fall :)
But lately I've really been anxious about how to balance the academic rigor, maintaining cleanliness while having 7 suitemates, sharing a bathroom with 3 people, having to be on the mandatory meal plan, etc. Calpro came in today and was 19 (!!!!) but I know that doesnt mean i can just start doing whatever. trying to stretch out this remission as much as i possibly can.
Really looking for some guidance from people who have managed to graduate from similarly rigorous schools and secure jobs. Main concerns are:
- balancing sleep, academics, and social life
- how do y'all do calpro tests and store medications while sharing a bathroom and fridge with others..? (im on tremfya and do calpro tests ab monthly,, dont know if my roommates are chill w me storing poo in the shared dorm fridge, and idk if im cool w storing $15k in it either lol)
- does graduating late/slower impact your chances of employment after graudation?
- how do you keep a clean hygienic space and keep yourself from getting sick? everyone I know tells me they get super sick in college :(
- working around mandatory school meal plans while not having a space to cook your own food (I can eat pretty much anything without trouble but I want to have a healthy diet and I have a lot of anxiety around food that I havent cooked myself.. what if it's contaminated or improperly heated???)
- how to take care of your mental health in the midst of everything else
if anyone has advice on one, all, or even unspecified things from above you think might help please let me know thank you :)
I’ve been diagnosed with Ulcerative Colitis since I was 5 years old, I’m now 17
I was in remission from about 7-12 years old and was in a flare from 13-15. I’m now 17, about to turn 18 and have been in remission for about three years
I was on sulfasalazine since I was five but my doctor said it was okay to stop taking a few months ago after my scope came back great.
I’m on Entyvio and have been for two years now, I haven’t seen blood in my stools or when I wipe for three years but recently I noticed it again when I wipe and I’m terrified of getting back into a flare
I don’t have much stomach pain but I do still have some. It’s been about a week of the blood but I don’t think there has been blood every single time i’ve gone
I forgot what it felt like to have those small stomach pains and urgency to get to the bathroom I don’t want that to be my life again I don’t know what to do and i’m scared to tell my parents because then they’re gonna worry and mention it to my doctor should I wait it out and see if the blood consists for another few weeks?
I also forgot to mention i’m on entyvio every four weeks but was just moved to every 6 weeks, it’s been about 2 weeks since my last infusion
I was just diagnosed with moderate-severe ulcerative colitis on June 23rd after a month of diarrhea, bleeding, terrible cramping/pain, fatigue and nausea.
I stayed in the hospital for a 5 days afterwards and got out on the 27th with 4 week taper of Prednisone starting with 40mg and Mesalamine to take every morning and evening.
Today (July 5th) I went from 9:00am to 4:30pm without a bowel movement, and when I finally did go, it was actually somewhat formed! Like little semi-solid chunks the size of baby carrots with some pudding consistency diarrhea at the end.
I am totally thrilled about this but don't want to get my hopes up.
What do you guys think? Should I see it as a sign of improvement or is it probably just because I've been eating more and went longer than usual without a bowel movement?
Hello everyone! I wanted to share a little of my experience with UC recently because I feel like there could be a lot of people who could relate. I am 21 and was diagnosed with the disease when I was 12. I struggled a LOT with my mental health because of how young I was when I was diagnosed. I went through extreme depressive episodes and isolated myself from others because of how different I felt, and how ashamed I was of my illness. When I got to college it only got worse. For my first 2 years of college I felt very alone and weird because I couldn’t drink alcohol or go out all the time as much as the people around me. I felt like I belonged no where and had no one in my corner. In my third year of college I made the decision to change my perspective and it has changed my life. I started therapy and became involved in the IBD community. I have met people who understand my illnesses and my limitations, and love me just the same. I realize now that i’m not weird at all for having UC, everyone has their own struggles and this is just what mine happens to be. To anyone who’s experiencing a similar thing I just want to say that it can get better and there are people out there who will love you UC or not.
So, this isn’t a question of “should I go on Rinvoq or not?”… nope, it’s happening and I’ve come to terms with it. Failed Remicade (gave me drug induced lupus), then Entyvio, Stelara, and Skyrizi just never fully solved the problem.
I received some great reassurance from a fellow IBD’er, thanks Kris. Also very active in this sub.
Anyway. I ordered a health tracker band to wear, so it can notify me of heart rate, AFib, etc.
What has helped you in regards to acne, weight, and any other common side effects? I don’t want to overthink or over prepare, but I also don’t want to let things go to the point where I wished I had paid attention a lot earlier.
Keep fighting the good fight, everyone. UC sucks so much. Everyone has their own problems, but this one we deal with is a bit shittier than others..
I am about at the end of my rope and don’t know if I can do this any more. I need support and encouragement. I was diagnosed with severe UC in 2019 with a couple hospital stays, started remicade, then switched to Entyvio. I was in remission on Entivyo until this year. At the end of February I was diagnosed with stage 2 breast cancer and started chemo therapy on March. The chemo triggered my UC to flair out of remission and is considered severe again. I spend a few weeks in the hospital. I had to stop chemo early due to my body not being able to handle it. I’ve been dealing with this flair since March. Steroids do virtually nothing for me. I had a mastectomy 2 weeks ago and recovering during this flair has been hell. I started tremfya 1 week ago and am still having symptoms. (I know it can take a while). Today was a terrible day, so much rectal/abdominal pain, tensemos, blood, and mucous. I have not been able to leave the house in 2 months other than for doctors appointments and have resorted to have to wear briefs everyday. I never thought I would have to battle cancer and UC at the same time and it’s breaking me. I need some encouraging words. TIA.
Hi all, I (34f) have a history of ulcerative colitis but am very fortunate to have been in remission for several years. I took Immuran for about 10 years but had to go off it due to neutropenia. I quit a few years ago and so far things seem ok.
However, although my colitis symptoms are in remission, I am often exhausted and have a hard time thinking straight. My doctor says that some people with colitis have lingering fatigue. I read online that low grade inflammation can also have cognitive effects. Has anyone here experienced this and found anything that helps?
It's been extremely hard to hold a job or navigate interpersonal dynamics because I feel like my brain isn't working properly. Antidepressants and ADHD medication helped a bit, but I still feel very tired and disoriented. I want to have some agency over my life again, but doctors seem to just be telling me there is nothing they/I can do, which has been pretty discouraging. Even little daily life tips for how I can navigate this would be a huge help.
Hello all I was just given Budesonide 9mg to help with the flare I am currently in. My doc also said it should help the Entyvio that I’m on work, I have only been on the Entyvio for a little over 3 months. What have yall seen or how have you reacted this combo?
Hi everyone! My husband just got diagnosed with severe UC about a week ago. He’s been in the hospital for 2 weeks now. His flare up started about 3-4 weeks ago. He’s barely eaten throughout that entire time. He’s been able to hold down some Ensure protein drinks and some blended up chicken soup the past couple days. They’ve had him on 40mg steroids twice a day for about 4/5 days now. The steroids are not helping as much/ as fast and the doctors were hoping so they’ve been discussing starting him on Infliximab but they haven’t yet because he’s had consistent fevers since a few days after being admitted into the hospital. They’ve had him on antibiotics and have done numerous tests to cancel out infections. Everything comes back clear. They are wanting to figure out what’s causing the fever before they start him on Infliximab. Has anyone else experienced fevers so often during a severe flare? His fever hit 105 the other night. Could the fever be caused by the severe inflammation? His pain hasn’t subsided. He’s been reliant on pain medication. This has been extremely hard to watch him go through. his symptoms have slightly subsided from how they were when we first got to the hospital. and the inflammation hasn’t subsided at all. there was a surgeon who came by to talk to us about the possibility of my husband needing to get his colon removed if they can’t get the inflammation under control. i’m hoping and praying that they can start him on the Infliximab soon and that it actually works. i’ve been reading through this subreddit and doing research to be as informed as possible. if anyone has any advice/similar experience/just kind uplifting words please feel free to share!
For those who had surgery by choice, how did you know it was time? I am flaring up again on Rinvoq & Entyvio and now added budesonide pills. It is really impacting my quality of life, but my labs do look like it's a mild or at least mild-moderate flare. I only really have responses to high doses of meds (like Rinvoq 45mg) and even that only lasts a few months/less than a year. But I also do have a couple more med options, I'm just not sure how likely it is that those will give me what I need since I don't usually have a lot of luck with biologics. I haven't been hospitalized in a couple years, but I don't feel like I'm at all getting the quality of life I want. I'm a bit nervous to leave the house because I keep having to run to the bathroom, and I'm having trouble controlling my pain levels even with all my as needed meds. I almost went to the ER yesterday but things are a bit better today. I'm also in college right now and I'm really afraid of how I'll be able to manage a full-time job when I graduate if I continue to flare, and I will need to get a part-time job soon anyway.
How did people choose between J-pouch and ostomy? I think I'd prefer an ostomy, but I would love to hear more thoughts.
How do you bring this up to doctors who may not understand the quality of life piece?
How do you manage things like leaks and surgery recovery? Those are both my biggest fears about surgery.
Do blockages actually happen much and do you prevent/manage those?
What do you generally wish you had known when you were considering surgery?
I am hoping to increase the frequency of Entyvio, but if that does not help I'm also going to look into skyrizi, tremfya, or velsipity. I think those are all I have left at this point. I would also love to hear if anyone's had experiences with those meds.
Anyway, that was a lot, but I am just really wanting to feel better and understand my options.
p.s. for those going on Rinvoq, it is an incredible med that took me from being in the hospital to traveling and having fun so it is still a great med, just not quite enough for me.
I was prescribed 40 mg prednisone and after 12 days on on it, I have not gained weight, the flares are equally as bad as before I started.
I do notice that when I take my prednisone, after 1 hour it kicks in and gives me energy that lasts between 4-6 hours while giving me the sweats, then its back to being ill with a flare.
Is that normal? Anybody else get a temporary boost of wellness after taking prednisone?
I was diagnosed with UC nearly 12 years ago after serious flares and eventually getting a colonoscopy in my mid 20s. I switched health insurance which forced me to see a new gi doc who wanted to get a ct scan after mentioning that I have pain after eating and acid reflux. My ct scan shows matted small bowel loops and I assume that’s where the pain is coming from along with the past issues of nausea, vomiting, severe pain with larger meals, etc. Has anyone with UC experienced matted bowel loops because that seems more related to being diagnosed with Crohn’s. I’ve always wondered if it’s really Crohn’s given my other symptoms but previous doctors didn’t really care because it was basically the same treatment with Humira at the time. I feel like I caused irreparable damage cause I wasn’t treating that area since I was only using mesalamine suppositories for the other problem areas. My dad’s sister had Crohn’s which always made me think it was weird for me to have UC, not Crohn’s, but that’s another thing. Anyone’s diagnosis change after a CT scan?
Cheers,
I live in Germany and we have mandatory health insurance here. You get prescribed a med and pay 2% of its cost, but 10€ at max.
When a medication fails, my GI simply suggests the next, hands over a prescription, I walk into the pharmacy and pick it up after paying afore-mentioned 10€, be it Humira or Jyseleca.
Needed blood checks etc. are included in mandatory health care.
And I could not be more grateful for this system.
I have read several stories about "applying" for certain meds so I would like to read how it is in your respective countries.
Enjoy your sunday, may your guts be tame!
Hi everyone,
I have steroid-refractory lymphocytic microscopic colitis. I also have multiple sclerosis and I’m being treated with Kesimpta, so my treatment options are quite limited.
I received my second Entyvio infusion 3 days ago, but I still feel exactly the same. The diarrhea and abdominal cramping are absolutely awful, and I haven’t noticed even the slightest improvement yet.
If anyone has experience with Entyvio and would be willing to share their story with me, I would be incredibly grateful. It would really help me to hear from people who have been through the same thing.
I wish everyone the very best, and I hope you’re all doing well. ❤️
Had a colonoscopy earlier this week and I had a Mayo score of 0! Such a relief because I’d had a couple bad flares last year that took a while to knock back into remission (with prednisone/budesonide/mesalamine enemas). I’m currently just on mesalamine and have never been on biologics, for reference.
Hi all. I got my diagnosis for UC about 6 months ago and im still not seeing any improvement despite being on mesalazine granules and doing two separate steroid stints since. Ive tried to ask my doctors for stronger long term medication but they seem to just want to give me another steroid treatment again. Im also vegetarian and wondering if this is causing any extra issues or if theres any foods I should be avoiding in general? Thanks all.
I am on immunosuppressant medication right… this girl I’m seeing I know she’s clean std wise and whatever. Without being TMI I was just curious as to whether it’s safe to perform oral on both front and back. Like after they’ve showered of course.
So I've been on a trip for the past 10 days, deviating significantly from my usual clean diet and eating lots of junk food, drinking most days (doesn't help when your girlfriend loves wine). I'd been faring ok for most of the trip but this morning I woke up with diarrhea after I drank like 4 drinks last night.
Any things I should do from here? I'm back home in 2 and a half days. Obviously I will not drink any more alcohol but any other things I should look out for, do or not do? Not gonna lie I'm terrified it's a flare after 4 years of remission. I'm also on week 7 of my entyvio cycle
Hey, anyone from India just want to know monthly cost of biologics. My doctor is suggesting biologics so just need info about the cost to prepare the budget for biologics or biosimilar.