How long do flares take to go down?

I’m so sorry you’re having to deal with this! I developed UC late in life (60’s) and have always said I’m so glad I didn’t get it young. Teen ages are so hard anyway and having to be isolated and housebound just stinks.

What country are you in? I ask because some countries/insurances make it harder for us to get the right med we need than others. Sounds like adalimumab is not working for you Several posters here have found relief from symptoms with xeljanz or rinvoq. There are lots of newer medications available now so that is good news! The bad news is that unfortunately it can take a lot of time and effort to find the right medication as not everyone responds to each medication the same. Entyvio worked for me, but it doesn’t for some others.

I’m guessing you’re either in the UK or Canada and it may take more effort on yours or your moms part to get you to the right med.

In the meantime when is your colonoscopy scheduled and what drugs are you on now? Diet can help a little in not irritating an already inflamed colon Most of us here go on a low residue which means basically chicken and fish, well cooked veggies, and some fruits. Smoothies made with kefir or yogurt and fruit are good to keep your strength up. Stay away from fast food and fried food or anything with a lot of additives You can look up the SCD diet which has helped some.

This is a lonely disease because most of the details are too embarrassing and gory to explain to others. But believe me all of us here have dealt with them and understand

Please keep us updated or just come and vent because it really does help to know youre not alone.

Hang in there Lilboyo! It’s a tough thing to go through for sure but the beginning is usually the hardest while everyone is figuring out what works. I have Crohn’s and was DX at 30 yrs old. I’ve been on several medicines and have been on Humira for about 10 yrs, with mostly periods of remission but am having a flare now so am taking prednisone and canasa suppositories. You WILL get better and figure out how to manage the symptoms of this, in the meantime rest and sip liquids and soup to stay hydrated. If you get a fever or chills go to the hospital or if the pain is too much but otherwise rest and sleep as much as you can now. Can you get a colonoscopy? Medicines don’t work overnight, they take a while to calm the inflammation then heal your insides. I agree they shouldn’t be talking about surgery or a bag or anything else at such an early stage when that most likely won’t happen anyway and even if it is the right approach that is not the current situation. Doctors and nurses say dumb and uneducated things sometimes too **shrug** Keep your chin up and stay hopeful! This flare won’t last forever and you will be well again

Hi...welcome tomthe forum.
The one thing I'm noting is that you had a sig-scope and not a colonoscopy to fully know how much of your colon is involved. Was the inflammation the entire extent of the sig-scope or limited?

I suggest you get results copies of absolutely every test you've had.

I can offer the suggestion to request mesalamine/mesalazine oral and rectal to treat the inflammation on a topical level.

Please keep us updated on how you're doing.

q

Oh my goodness, whoever said you're not trying hard enough I want to punch them in the face. I ended up going for therapy to help me deal with this kind of attitude from ignorant people.

Here's the thing. Most people can't handle the idea that our bodies do things beyond our control. So when someone gets a disease they try to find a reason or something to blame it on. It helps them feel more in control and makes the world a less scary place. Your disease is what it is, same as cancer doesn't care who you are or how healthy your lifestyle is.

The best thing you can do is educate yourself on the different treatment options and take your medication as directed. Since not all doctors are equal (and treatment protocols vary from hospital to hospital and also across national borders), sometimes you might have to be your own advocate and push to get certain tests or drugs. But beyond that.... you're 17, you should be out enjoying life (and going to school...), we all feel for what you're going through, you are already so strong for living through this and NOONE has the right to blame this disease on you.

Rather than make a new post, I think I’ll keep on replying here. I don’t want to take up too much space

Day two in the hospital! Unknown iv steroids seem to be doing me good, blood is already patchy and going away. The nurses gave me a bit of a stress (I have to have my blood thinners in an area other than my stomach, same as I do my adalimumab in my thigh. This ward refused to do it that way, even though they literally gave it to me in my arm yesterday. I had to explain that over and over until someone did it in my thigh.) and it got a bit worse but I’m feeling slightly better again. I think stress is a main cause that almost seems to be the thing that overcomes my medication, and it’s been a big struggle to be able to get away from that. The person I live with and who obsessively stays all visitor hours in my hospital doesn’t really understand my disease, and really just wants it all to not work and for me to need surgery and a colostomy bag like her. Whenever I explain what the doctors are saying and the medication, she just says they’re “masking” it and I can’t live normally and my disease is too ‘severe’ (the doctors have NEVER called it severe and say very often I respond well to what they give me, just not for long enough) for me to live a normal life. It panics me and it’s so wrong that she doesn’t understand that my
Cortisteroids aren’t meant to “cure” anything like a surgery will, and what an autoimmune disease does (I’m not an expert by any means, but I do take biology as a subject and have had a major interest in microbiology and diseases since I was small). I try to explain to her but she just won’t have it because we have to live in a world where I’m going to turn out exactly like her.

How likely is it actually that this amount of stress, obviously on top of studies (which I’m pushed to do even during my worst flares for a bit of info) is actually maybe hindering my medication working? Is it possible that it’s the fault of my overactive brain that the things I seem to react well
go in the first doses always wear off? I’ve had 6 total adalimumab shots, so not many at all, and I do suppose it’s just a case of seeing what happens while having the next plan and next medication ready to go. I’ll bring up the ones mentioned here to my IBD nurse; she’s the best and has really helped keep me on my feet. I know stress is a factor of keeping flares going and such, but just what level of hindering my recovery could it be? I might have to call back to my GP for medication to calm that if it’s an actual concern, but maybe it’s not.

LilBoyo thanks for the update. Yes, stress isn't good for any kind of disease, but stress does not cause UC otherwise everyone on the planet would have UC. Maybe when you're feeling stressed, just say to yourself Hello Stress, these are my feelings and they are valid (being in a hospital for a debilitating disease with what sounds like a very stressful family member breathing down your neck IS intrinsically stressful!). I don't know how long ago your mum/aunt had their surgeries but there has been an explosion of new drugs for IBD in the last decade. I was diagnosed 8 years ago, by 2018 I had tried every single licensed treatment for UC except for xeljanz. I was one of the first patients on xeljanz after it was approved in Europe. It was my last shot before surgery and i even had a consultation with a surgeon because everyone (including my gastroenterologist) assumed i was going for a colectomy. Well guess what, a couple of months later I was in remission and have been living a pretty normal life for the past 4 years. I often think, if I'd been in the same situation a few months earlier, I wouldn't have my colon any more.

Now that all being said we have a few members here who had surgery and many of them are very happy with the results. Not all types of surgery result in a permanent bag (if you do have UC then an internal j pouch is the more normal procedure which only requires a bag temporarily). I've done the research into surgery and if I need it one day then I'm ok with that.

Infliximab and adalimumab work by the same mechanism (tnf inhibitors). Do you know if the loss of response was due to antibody formation or just a primary none response (a blood test will tell the difference)? As that makes a difference in choosing the next treatment option. You may do better by switching to a different family of drugs.

But

*You do need a colonoscopy as soon as humanly possible*

Without a diagnosis, and without knowing the extent and severity of your disease, it is really difficult to know the best treatment path. If you can, please beg your ibd nurse or whoever is responsible for arranging that, to bring your colonoscopy appointment forward.

Remember that even though things are awful now, it will get better! Hang in there and please keep us updated 🙏

Sorry you're having so much trouble. There is no set amount of time a flare can last. It could be weeks, months, even years. Some people have minor symptoms that come and go within days. Once you find what works for you, you can also experience really long remissions that can last years, so give yourself time to find what works. Azathioprine is a good option, but it doesn't work quickly like some of the newer medications. They will keep you on the steroids until you're stable. Getting off the roids is always a challenge. I had surgery because my condition was refractory and my quality of life was minimal. There are a lot more medical options now, so surgery is pretty unlikely these days. I don't have a bag, I have an internal pouch. It's definitely not a cure. My quality of life is much better than it was with UC, but it's not like I have the same function I had before all of this. Stay calm and give yourself time to heal. You will find a treatment that works for you.

Haha, I’ve never had any alcohol in my life, and acidic drinks made me feel sick before I ever got diagnosed. Fast food is definitely a vice of mine, same with spicy food. and I’m working hard to not eat as much of it, definitely during a flare. And less cheese. And more soya milk. A nurse from another ward messed up my azathioprine timings but we have those in my medication drawer now and a gastroenterologist came to see me and I know a little bit more of what’s going on behind the scenes.

The man meant to do my colonoscopy on the 14th will be taking over for the doctors off on strikes in my area, and they need to figure out whether to pass me to an out of NHS doctor or if the man won’t let them (he’s had a big part in my medications and diagnosis and such) and if so when I need to have that colonoscopy. I have been moved to the right ward now! It’s always so stressful, but now I’m just waiting to see if my haemoglobin still goes down and what my gastro team says from here. Once again, the gastroenterologist said they really don’t want to do any transfusions and such on me because I’m so young. It’s helpful to hear that. It makes me feel like less of a lost cause that they still feel they have lots of options.

I’m trying to cut down on ‘snacking’, possibly the worst time when they’ve just put me way back up on steroids. It’s not like I’m an unhealthy weight, I’ve just come up from almost being underweight, but I don’t want all my weight to just be in bad crisps. Does anyone have any tips for small foods to eat during these times? Obviously I’m struggling now with lactose, but things like chocolate I would say is also a no no. I tend to crave meats and vegetables anyways (I always want kfc burgers with lettuce! I’m trying to find healthier sandwich alternatives but they always have a texture I can’t handle).

First let me say this loud and clear:
YOU ARE NOT TO BLAME IN ANY WAY SHAPE OR FORM, FOR YOUR DISEASE!!!

While stress can be a trigger for a flare, it is not the cause. This disease is complicated and not entirely understood in its causes. And our actions or thoughts don’t cause it to happen. Everyone in life has something they have to deal with (some harder than others) but what matters is the choices we make in dealing with it. Make positive choices/changes and do all you can to offset the disease symptoms and that’s all we can do.

That’s not to say stress can’t be a factor. Try dealing with it with meditation or calming techniques such as deep breathing and muscle relaxation. And then when you’re physically recovered and strong enough, exercise (even mild forms like yoga or going for a walk) can be very beneficial in dealing with stress. You’re probably way weak physically right now though so don’t overtax your system by trying too much too soon

Food: I loose so much weight and body mass that I craved meat too. I did try to avoid food additives and too much sugar which is why fast food isn’t much recommended at this stage. I would make turkey or chicken and pork or beef (combination of all or 2-3) meatballs. There’s a very simple recipe that just requires the meat, an egg and then some flavorings. Mix all together and then roll into small balls, bake and then freeze. Pop them from freezer to microwave and they’re ready in a couple of minutes. Also look for meat sticks without a lot of additives. Those were a go-to for me. Peanut butter on saltines is a quick snack. Cooked veggies are good. Raw veggies can be tough for an inflamed gut to digest.

Well, I’m back again haha. Still in hospital. The last two days or so were looking good with the bleeding having stopped, bloods going up and just generally I felt better in myself.
Last night, for no discernible reason I started getting discomfort and now I’m bleeding again. I haven’t even gotten out of hospital yet- they were looking for Wednesday to discharge me because things were looking up. It all just feels like a horrible cycle of cheering myself up, getting my hopes up and starting eating ‘better’ foods and taking walks, and then it all falls apart again. I was at least looking forward to a couple of weeks of a manageable life before I was back in hospital again haha. I’m still trying to hold on that maybe it’s just a blip, and I don’t feel too bad. I think today is just one of those struggling days. I don’t really have any questions or advice to ask for right now, I just wanted to let everyone know how I’m getting on.
Colonoscopy is still scheduled for Friday, and I’m dreading the prep. It gives me panic attacks and I really just can’t get it all down, which I assume is a much bigger deal than in the sigmoidoscopy I had. I’m just trying not to think about it right now when I’ve got this too.

Unfortunately the consent form for the colonoscopy has freaked me out a little haha, I know it’s all just for legalities sake and I’ve had a sigmoidoscopy with 6 biopsies so there’s no reason for me to be afraid, but I don’t think anyone can completely put “but what if”s out of their mind.
I just wish my stress (and probably the steroids) would stop telling me the solution is big hankerings of meat. I’ve been complaining about wanting pizza and then a subway sandwich and then back again for the last few hours, and I can imagine it gets really annoying for people who have never experienced this kind of thing. I had my canula taken out today as well, an extra fear of mine, so not caving and ordering anything in has been a struggle, but it’s probably better not to be having greasy or fried foods so soon to my colonoscopy. I’ve been saying I’ll treat myself as soon as it’s over to try and ride away the stress, so Friday is something to look forward to rather than be anxious for.
I didn’t have sedation for my sigmoidoscopy, but it seems to be the most responsible decision here even though it’s an extra layer of uncertainty for me. Hearing people talk about the procedures so naturally here makes me feel a little bit better, I think a lot of my anxiety just comes from how unlucky I’ve been with random reactions to things the doctors can’t explain, which I didn’t have so early when I had my sigmoidoscopy.
It’s just a matter of waiting, which I think is the worst part. I’ll be sure to treat myself very nicely after the colonoscopy because I know I’m doing my best! They just want to be sure it’s not crohns and check how I’m responding to the medications I’m on, anyways. I’ve got this!

The colonoscopy is seriously the easy part. The prep sucks because it can be a lot into get down and you’re in the bathroom for hours but once you’re clear you will feel a bit better too since there is less for your digestive system to have to process. The less you eat the day before the easier it is, don’t load up on food because it’s just more that has to come out. But once you get in there the colonoscopy is easy and so routine, they give you saline in an IV and you'll feel more hydrated and just better. The doctors and nurses take care of everything so you can just relax. I usually take it easy on food afterward as well, since my system is empty a nice soup and some bread or crackers is an easy meal that makes me feel better. Good luck! You’ll do great