How long do flares take to go down?

It's probably Stelara, especially if they are thinking possible Crohn's. Yeah, the "procedure abandoned" note makes no sense and sounds like some medical person needs to correct the notes but don't even worry about that. It's good they took a lot of biopsies.

Sorry your family member is being the opposite of supportive. There is nothing embarrassing about having a chronic disease or being stuck in a hospital. She actually sounds like the embarrassment. My family never even visited me when I was 23, living alone, had no support system, and became so ill I thought I might die, or later when I was a bit older but super ill and hospitalized twice. I was looking into surgery a couple years ago, and my main worry was I won't even have a ride or someone to care for my cat or help me when I get back home. I don't talk to any of them anymore.

This is a lot to handle at 17, or any age, and to not have the loving support you deserve makes it that much harder. But, you're going to get through it. I'm glad you found the forum.

Thanks for sharing the report. It does sound a lot more likely to be Crohn's than UC. Biopsies will tell more, but I'm betting it's Crohn's.

In terms of medical treatment, it doesn't change much.

Okay, so the gastroenterology team paid me a visit and said I could be starting vedolizumab. I was meant to have my first infusion yesterday, as I’ve been saying, but they said they were going to speak to my IBD team and then never returned for the rest of the day.
Having looked at it on crohns and colitis UK, it does seem different to the other inhibitors I’ve had, because it’s not a TNF one, so it’s good they aren’t just trying the same thing over and over again. Obviously, I’m in a bit of a stress right now because I’ve had two unknown reactions to infliximab infusions, but I know that has to be the medication, not an infusion itself; I’ve had so many infusions of other things that have gone fine.

I did ask why they seem to be going through medications so quickly for me, without giving them a proper time to settle in, considering I’ve only actually had 3 ‘doses’ of adalimumab (4 shots, 2 shots then 1 shot) and the gastroenterologist said that the colonoscopy results showed inflammation that, having had the high dosage loading doses, they wouldn’t expect to see, so they (to quote him) wanted to ‘cut their losses’ instead of waiting for the moderate dose while they still have medications to try. He also said that he’s pretty sure I have colonic crohns, but they won’t really say it definitively on paper because of how difficult it is to say with absolute certainty. He said the biopsies may sway it a certain way, but he can’t imagine so. My family member had colonic crohns too (she didn’t know it was called that, but she had either all or parts of her colon removed, she didn’t really seem to know, which the doctor said would make it colonic)

It was a lot of news, but I at least had a little laugh because he asked if I’d been on enema treatment for a while. I said they’d tried, but it hadn’t really been doing anything for me except causing me pain so I very quickly stopped it (at the recommendation of my IBD team, of course) and that was that. He said I looked like I’d been on enema treatment for years because that lower area was actually doing quite well! I know it’s not something in my control, but I felt weirdly proud to have a bit of my bowels looking good. He did say I might have to do a tablet endoscopy too, the one where you eat a tablet? Because they might want to check for upper symptoms and the small (?) bowel. I have no issue with this except one of my friends did this and apparently the tablet got stuck in her, which I can only imagine with all my luck would happen too haha.

So yeah, just waiting for an update on the Plan from my teams. As of yesterday I have been in hospital for two weeks, so it’s looking like my previous record of 17 days in hospital in my first visit is going to be beaten, but it doesn’t feel like nearly as long has passed yet.

Beave, you’ll be happy to hear this one haha. The gastro team came up a few minutes ago, and have basically completely overturned their first ruling. I assume this was why it was radio silent yesterday, I think there was a lot of professional arguing going on.

They’ve now said I haven’t had enough time to really see what the azathioprine and adalimumab will do, considering I have only had the loading doses, so switching medications would be a bit fast. They want to continue monitoring me as usual at the 12 weeks mark, and are now under the belief the colonoscopy could’ve been a bit “misleading” because I was still in a flare and yes, the medications are very new to me still. I’m being discharged today to just continue on the current plan.

I’ll absolutely keep that about the capsule endoscopy in mind if they ever bring it up again- they didn’t, the team today actually said they would rather not do any endoscopies if they can help it because they’re invasive. It is a bit stressful to be brought back and forth where my teams seem to decide one thing, then another, then another, but this seems like a reasonable decision at last. Who knows what will happen from here, but all I can do is keep on doing what I’m doing now.

Are you on prednisone along with the Humira and imuran?

I think it's good to give it Humira a little more time, but also be quick to let them know if you get worse or aren't improving in the coming weeks.

Pay no attention to the negative feedback of that family member. It will make your healing more difficult. Focus on yourself.

I am really impressed how you’re handling things! You should be very proud of yourself! Challenges in life are difficult and what’s important is our attitudes in dealing with both success and failure. It’s hard to stay positive sometimes in the face of challenges— all we can do is get up and try again. And if wallowing in despair comes along, ship it out the door as soon as possible.

Anyway, glad you’re home. Keep us updated!

I’m sorry your support person is making this difficult for you, it’s not the time for sure.
I have Crohn’s, I have had a stricture, and have had a handful of doctors and nurses tell me I would probably get surgery at some point. I still have Crohn’s but the stricture went away and I haven’t had major surgery after 17 years of this. Try to take what they say with a grain of salt and focus on the problem today rather than imagining hypothetical scenarios in the future. It’s too overwhelming with everything else going on, just focus on today and rest and heal. Even if you did need surgery in the future that is not a problem for today. There is a difference between a medical recommendation based on a current diagnosis and insensitive catastrophizing! One nurse told me during my first severe flare I would possibly have my entire colon removed in the future and I agonized over that while I was already very sick. Turns out that isn’t even something Crohn’s would respond to anyway 😂 and she was just an idiot. Take care of yourself and do what you can to protect your peace and get better. You will get better too! Hopefully you can find some support and younger people your ago who have Crohn’s/UC in real life, there are tons of us now! ☺️

Still on the prednisone? 30mg? If so, go back up to 40mg and stay there for the time being.

Did the biopsy results come in?

What date did you take your first dose of adalimumab and what were the dates of the subsequent injections?

Eat simple bland foods, like white rice, oatmeal, banana, applesauce, chicken without skin, fish without skin, ground beef, yogurt, etc.

It's completely normal to feel frustrated, sad, angry. First, you're sick. Anybody sick doesn't feel right mentally. Second, you know you're dealing with an illness that doesn't just go away in a couple of days. Third, prednisone can make anybody emotional. So don't beat yourself up about feeling down or frustrated or sad or angry. It's normal and expected.

Back again, I don’t usually post twice but I’ve had a nap and my tablets I think have kicked in, I’m feeling a little better, or at least like I can make today bearable. Mornings and nights really are when symptoms hit worst for me, and it can be a little bit overwhelming! I’m a person who very much lives entirely in the present, to the point where I can sort of struggle to see anything else but what’s happening right in that moment, whether that’s how I’ve been raised or just a part of some of my neurodivergencies or other things I don’t know, but as much as it is important for me to accept I’m having a bad moment I try and make sure I’m also remembering I’ve had better times, it’s not always been this low since about January when I first started getting symptoms, and it won’t always be this low. I do know a little bit about toxic positivity (but that book sounds interesting and I might ask for it for my birthday!) and it’s hard to juggle a healthy balance, especially now haha, but thank you for the concern, and I’ll let myself breathe a bit more and try not to beat myself up. I know my mind tends to think only in extremes as a major flaw, and I’ve had lots of therapy on that, so it’s time to put it to the test.

Yeah today is day four of 25mg (5 steroids) which they were trying to taper me off of and adding the azathioprine because I have a history of just getting my symptoms back when I go below about 20mg. It does seem to still be working a little bit, though maybe it’s also just my attitude I’m not sure if they kick in like hours later like paracetamol haha, but if I continue like this or get worse I definitely think I’ll contact my IBD team to tell them I think I need to go up again. I did it when I went to comic-con because I really wanted to hold out during then, which mostly worked but it’s a little bit different now. I’m going to have a light lunch now and really try and eat small and frequently, as that’s something I haven’t been doing as well and I can actively see it’s not helpful. Its something I’m going to have to push back against my parents about, because they tend to like me to have about one big meal and eat absolutely nothing in between (the amount of times I’ve gotten ‘well now you’re not going to eat your food’ after having a small snack bar or something hours before lunch or dinner…) but that’s really just not possible now at all. Especially I think with what we now know is a stricture, not just random constipation.

My IBD nurse said on a Wednesday crohns and colitis meeting my stricture was caused by inflammation, not a mass of scarred tissue like I thought, so they really want to try and treat it with the anti-inflammatories. She said my main issue with my crohns is inflammation, so by getting that down they’ll get down the flare and the stricture hopefully without anything else needed. Does that sound about right? If so, that’s actually really positive news. I thought strictures could only be scar tissue or something, and knowing that it could maybe go away or become less of an issue when we tackle my inflammation is great, but I don’t want to get my hopes up either if that news isn’t exactly right. I really trust that IBD nurse in particular, she’s been with me since the start and has actually helped by standing up for me against family members who have been unhelpful. She has a tense relationship with the one who causes me the most issues, with that family member actively saying she doesn’t like her (but then suddenly they were best friends talking about how I might need surgery… which I talked to said IBD nurse about and she said she would never say that so) so I might just be biased toward wanting to believe her. I just wanted to see if that’s a thing that seemed like it could happen. I know these diseases are so personal and individual that really anything could be true, but it’s nice to get other opinions, especially when you all were right about sticking to my medication before the gastro team were.

LilBoyo -- strictures generally can be either from inflammation or scar tissue, but usually it takes a long time for scar tissue to build up (years maybe) so I suspect your IBD nurse is correct that yours is from inflammation so once the meds kick in the stricture should go away.

With a stricture it's best to eat several small meals rather than one large one so that you don't get blocked by too much trying to go through the narrowed opening at the same time.

The path to healing isn't a straight line. You will have good days and bad. Hopefully more good than bad as the meds do their job. Mornings were always the worst for me and when I had to commute to the office I got up 2 extra hours early so I would be cleaned out enough to be able to get to the office.

How often do you take adalimumab and did you miss any doses while you were hospitalized?
Azathioprine can take about 3 months until you are in the therapeutic range so unlikely that you are seeing any help from that med yet. They should be doing weekly blood work when you start that med for at least a month so make sure you don't have any reactions (problems with liver function can show up quickly on the blood test long before you have any symptoms). Also, most times they start you on a low dose to make sure you can tolerate it and then increase until you are on a therapeutic dose. The dose is based on how much you weigh. Do you know what dose you are on?

Feel free to stop by as many times as you need to.

Checking in on you.

I hopeyouare feeling better.

Clo