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What are some of your signs that your flare-ups are getting better?

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Ulcerative Colitis
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Posted 10/18/2017 8:12 PM (GMT 0)
Hello, I am 18 years old and have been diagnosed with UC when I was 13. Very young, unfortunately. Seeing as I was so young when I first got it I have failed to take it very seriously, or atleast not as seriously as I should've. I still kept eating as unhealthy as I could, many hours being lazy and just slopping with medications my doctor gave me. I think the reason for this is that I was too young to understand that I should really treat this as a serious illness and that's why I'm here today. Around 2 years ago my grandfather introduced me to more natural means of treating my illness and it worked wonders for me, all the way until now. I lived almost 2 years without having to worry about my UC and it felt amazing but of course I was recently hit with a flare-up again and it is mostly because of me not taking it seriously since I wasn't ill and I thought I could do whatever I wanted. Now I'm back on prescribed meds such as asacol and prednisolon and I'm finally out of the ER but I still feel far from healthy. Since it was so long ago I do not recall how long my previous flare-ups lasted or if this one is more severe but I am still very anxious about this specific flare-up, especially since I've been able to live normally for a while. There's still a large amount of blood in my stool everytime, and while there's some signs of small droppings of poop it isn't a lot, it's tough to go on walks, go outside or exercise due to my need for a restroom being so unexpected and my stomach hurts a lot of the time. So I was wondering if just tiny signs of actual droppings instead of just pure blood which I had around 1 week ago is in itself a good sign I'm on the right track or is it just because I eat more now than what I did when I was stuck in the hospital? I also feel like I have a little more energy during the day but that might just be due to me taking vitamins and sleeping more than 2 hours every night (I only get around 4 hours now but it's better). What are some of your signs that shows you're going in the right track if there even are any? I'd really just like to feel less anxious because I have taken it so much more seriously and somehow it seems to take longer than any of my previous flare-ups when I was mostly messing around as a young teen. Any replies would help, thank you. smile
Posted 10/19/2017 11:42 AM (GMT 0)
I usually notice a decrease in frequency and urgency first, followed by more formed stools and the presence of blood is the last symptom to go. Everyone Is different but you should see a tiny bit of change with each passing day. If you aren't seeing any change after more than a week on prednisone you may want to call your doctor. There are times I needed Iv steroids as I no longer responded to oral steroids.

It does suck to have this as a teen. i hope your family is a good support system for you.
Posted 10/19/2017 12:10 PM (GMT 0)
I think it is a little too early for you to see improvement. Be patient and give it time.

Bad flares tend to give me a lot of abdominal pain (sharp, knife-stabbing pains) and discomfort (constant aches). I find that pain becomes less severe and then fades completely as I heal.

Stool will improve in consistency becoming more dense. If it's a bad flare then it is going to be a process going from water to slightly formed, to fluffy/ragged edges, to formed but fall apart, to formed etc.

Blood can go away as the very first improvement or it can be the very last symptom to go away for some people; it varies.

Gas tends to increase as we heal.

Just know healing is never a day-to-day linear improvement from flare to normal. It is more like a rollercoaster track, full of big highs followed by big lows, and a whole lot of daily variation which is extremely frustrating (we just want to know we're getting better and wild variations make that hard to ascertain). Week-to-week you should notice an improvement, but seldom day-to-day.
Posted 10/19/2017 11:00 PM (GMT 0)
for me, i'm not in remission and probably still in the early stages of getting there (Entyvio is a slow moving drug for some people). However, I have seen these signs which makes my optimistic that I'm headed there:

1) Decrease in BMs. Used to be 7-8 daily, down to 3-5.
2) Decrease in the violence of each BM. I used to have serious diarrhea when I had a BM which caused dehydration and exhaustion. BMs now are much calmer and my stool has even started to regain some type of form.
3) Much more gas. During the first several months of my flare, I rarely had gas as everything was a BM. Now, most of my trips to the bathroom involve a lot of gas and I can usually pass gas without a problem now.
4) Urgency has gotten better. Every BM before used to have serious urgency. Now, the urgency will still happen (it wont go away until the inflammation is gone), but the urgency is less urgent now and now accompanying every bathroom trip now which is a nice relief.

Remission is a slow process and it wont click overnight. you will have good days and bad days. the key is trying to put together some good days in a row and gradually increasing the number of good days compared to bad days.
Posted 10/20/2017 11:41 AM (GMT 0)
hi fragilant

looking back would not change things. I am new to this as a parent I have a 13.5 yr old daughter just diagnosed with pancolitis UC...out of the blue 2 months ago.

She takes it lightly but this is ok as she needs to continue to be a kid. I look after her diet, meds, I read and document myself for her..

I'm optimistic as I'm new to this. You have your life ahead of you and I'm sure progress will happen in your adult years to this terrible disease.

I believe diet is a major factor to help, as well as alternative medicine.

I did not figure out what to do next if condition worsen for her but praying is helping the hope up.

Could you share with me what has been the biggest impact so far in your teen years dealing with UC ? not sure what to prepare myself for ..

I know it is tough but it seems you're already heading into the direction of alternative healing and I think this is great.

nice to meet you hope to keep in touch- mom to 13UC

Posted 10/21/2017 11:26 AM (GMT 0)
Hi eca, I'm sorry to hear about your daughter. Dealing with UC is never quite easy, especially at the age where you're supposed to roam free and have little to no worries. Unfortunately speaking about my experience as someone who was diagnosed at a young age may not be the most helpful as I still struggle with it today and when I was younger I made a lot of stupid decisions but I am still experienced so here's my best advice.
Make sure she always takes her prescribed medication, especially during her flare-ups, when I was diagnosed I felt like a dying old man having to take my medication all the time and actively chose to skip out on some morning meds without my parent's knowing. This is obviously not smart because they're very necessary in order to get into remission and also cause other issues. Letting her know that she needs to speak to you or someone else whenever she's in pain/feeling signs of her flaring up is also important, when I was younger I found it very embarrassing to even tell my mother and father about what I was going through so I kept it a secret for most of it, the earlier you get treatment the less you will have to go through for the most part so hopefully she knows you're there to support her. You seem to understand that diet is an important part of being healthy which is good, but here are some things that I use now while having a flare-up that definitely help me; Mangosteen juice is very good, it's not easy to find and I had to buy it from overseas as I live in Sweden but hopefully it's something you can find. It calms my stomach and has a sweet taste so I doubt she'll find it too disgusting. I also take ginger shots 3 times a day, this is very anti inflammatory and works wonders,
I also really enjoy the taste of ginger so my daily ginger shot is something I always look forward to.
Make sure she still eats but it's much better to have multiple smaller meals a day, a mistake I've made for sure is skipping out on meals and saving all of my hunger for whenever dinner is on the table and then chow down as much as possible, this isn't healthy either way but when you have a very sensitive stomach it should be avoidable at all costs. Eating a banana here and there, cutting my dinner in two and then save some for later that night, etc. It all helps me keep my tummy in check! There's a lot more to list but those are what help me the most whenever I'm in a flare and feel very helpless. I'm 100% sure any of these work just as fine when she's in remission too though smile Feel free to ask anything else if need be.

eca said...
hi fragilant
looking back would not change things. I am new to this as a parent I have a 13.5 yr old daughter just diagnosed with pancolitis UC...out of the blue 2 months ago.

She takes it lightly but this is ok as she needs to continue to be a kid. I look after her diet, meds, I read and document myself for her..

I'm optimistic as I'm new to this. You have your life ahead of you and I'm sure progress will happen in your adult years to this terrible disease.

I believe diet is a major factor to help, as well as alternative medicine.

I did not figure out what to do next if condition worsen for her but praying is helping the hope up.

Could you share with me what has been the biggest impact so far in your teen years dealing with UC ? not sure what to prepare myself for ..

I know it is tough but it seems you're already heading into the direction of alternative healing and I think this is great.

nice to meet you hope to keep in touch- mom to 13UC

Posted 10/21/2017 5:52 PM (GMT 0)
thank you Fragilant
very useful info as she is fussy eater and I'm working very hard everyday to find alternatives for her diet that now excludes gluten, dairy and sugar.
What I believe is crucial in this fight is that affected people work on getting their self trust up via psychotherapy. Finding a great professional that works well with you (chemistry is key...) and young adults could prepare any of us to better deal with big challenges like UC. Try to do activities that make you happy- my daughter paints a lot and this makes her relax. We plan to take yoga classes together and try the bioenergy therapies. Not sure if you already tried any of these already but sounds like you could use some support to help you get through this difficult time. The most fun part of your life is coming in your 20'ssmile so hopefully with this right attitude you will get soon on the remission and start to do your favorite activities again. If is any comfort at least you have a medical system in Sweden that is great- we have been traumatized by the medical services in Romania were we live now- if I need to access the Canadian system in this situation I need to return back to Canada for 6 months just so she has a simple check out...it is very frustrating not to be able to have a second medical opinion for her condition.
Thank you for offering to chat with her. I'll keep it in my mind when the opportunity arises. Try to use this forum to vent and to get support do not hide alone in this suffering. A young body has immense resource to heal itself....like this lady Jasmuheen maybe you've heard of her. Sure it takes a lot of believe and discipline but we've all got so many resources unknown treasures. Take good care of yourself and try to turn this in your personal successful experience that younger kids like mine can get support and inspiredsmile. Fast recovery my dear.
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