How do you know when a flare is gone?

[danielle.wilson411]

Hi everyone. New to the group and recently diagnosed with Crohn's so lots to learn. I was just wondering if anyone can answers some questions I have about my recent flare. I don't have an appointment with my doctor for three weeks and I don't want to keep calling them every time something goes wrong and it would be great to get help from individual's who have been through some of these same things.

I have been on prednisone since my first hospital visit where I was diagnosed with Crohn's. My doctor told me to taper down 10mg each week (started at 40mg a day) so yesterday I tapered down to 10mg and it didn't seem to go well. After about half a day I started to get abdominal pain and then had a bloody bm. I know blood is common with a flare but its still something scary to see when you aren't used to it. I immediately went back up to 20mg and called the doctor who told me this is common and means there is still some inflammation going on and to just stay on whatever dosage I was at where I didn't have symptoms. So this means I may be at 20mg until my appointment in 3 weeks and even though I haven't really had many of the symptoms I've read about other people having on steroids I still have done a lot of research about long term use and I am wanting to get off of them ASAP.

My questions are:

How long does the inflammation normally last? (my hospitalization was Feb 20-22 and I've been on steroids ever since)

When do you know that a flare is gone and you are in remission?

Is the blood something that is truly common with a flare or should I be more alarmed about this? (it's bright red and not in the poop itself)

Anything else anyone else would like to share with me would be greatly appreciated too. Like I said I am new to this whole thing all together so I just don't know what to expect at all and am a little scared for what the future will bring for me. I'm 28 and its very scary to know I will be dealing with this for life which hopefully will be at least another 50+ years.

 

[ronroush7]

Welcome to the forum. Once they find the right mixture of medicines for you, things will calm down. I was diagnosed with Crohn's 26 years ago and I still have questions concerning when I see blood. How long the inflammation lasts csn vary. Getting back to the blood, symptoms can vary from person to person. It seems like with each flare I have had the symptoms are not always the same. Are you on anything right now except for the prednisone? Be encouraged. There is a lot of good support here. Keep us updated on how you are doing.

 

[danielle.wilson411]

They also put me on Pentasa in the hopes that this will work once I get off the steroids but the doctor did also tell me that it normally doesn't work for Crohn's. My CT at the hospital also showed I had a lot of inflammation so I may have a moderate to severe case which he said the Pentasa will more than likely not work for either but they want to at least give it a try before they go to the more intense drugs.

I guess I had just thought that I was in the clear because things had been working smoothly but that was probably just the high dose of steroids helping me. I guess I will just wait to see what he has to say at my next appointment. I should be hearing back from them today as well once the nurse gets ahold of him.

Thanks for the response!

 

[ronroush7]

You are welcome. I was also put on Pentasa for a brief period of time recently.

 

[Ally1234]

I dont have much advice I'm afraid but I'm in a similar situation to you. 23 years old, newly diagnosed with crohns I was in hospital Feb 12-17 on iv steroids and on prednisolone ever since. I started on 40mg tapering by 5mg every two weeks which is much slower than yours. I dropped to 30mg on Monday and it's now Thursday and I had my first bad bm. Up until now it was getting much better. I try not to worry too much about the long term effects of steroids, i have read that the first flare is usually the worse, I guess you just have to trust the doctors and also listen to your body because the steroids must have been helping at the beginning.

 

[ronroush7]

Sending prayers and support.

 

[Lady Organic]

Hi Danielle,

Im glad you seem to have good monitoring with your doctor. Blood is definite sign of disease activity. This is more important to take care of than to think about the possible side effect of steroids. so do not worry at this point with the steroids and just focus on your remission and feeling better . Your doctor seem to have a good plan, give a chance to Pentasa a mild medication to help you. Try to believe in this possibility, you may be lucky. If it doesnt work your dr will have another plan in the very near future. This might mean to continue using steroids for some more weeks for giving the time for another medication to kick in. Unfortunately we dont have much choice with medication, and often we have to use steroids. Most important is to keep the symptoms as minimal as possible to avoid further intestinal damages. wishing you well.

 

[JaimeM]

I guess when I know a flare is done.. No pain.. My main problem with a flare is pain in my right abdomen. I have some diarrhea but not really, I really have been careful about what I eat (limited sugar and bread, nothing greasy, no beef.. Basically these are the things that irritate my gut and I just stay away during a flare)

I've been flared for a few months and had my meds changed.. So in 6 months the dr is having me do an MRE and a colonoscopy to make sure the inflammation has subsided.

 

[danielle.wilson411]

Thanks for all the replies!

I was able to talk to the nurse yesterday after she got ahold of my Dr. and he gave me a couple options. Either stay on the 20mg for a few more weeks and keep the appointment I had with him in April or meet with him next week. I asked the nurse what his plans were for our next appointment and she said just to follow up but they are still hopeful in the Pentasa so not really plans to change meds yet. So I decided to stay on the 20mg and just wait until April to meet with him. She reassured me that the blood is just part of the disease and sometimes it can take a few months to get a flare to clear up. That did help ease my emotions a bit because I guess I was assuming it was just maybe a week long thing and that all the inflammation was gone since I was feeling a lot better but that doesn't seem to be the case. I am trying to remain hopeful in the Pentasa working but from what I've read it doesn't sound promising for people with CD. I guess until then Prednisone and I will just be best friends and not think about the long term effects. It makes me feel better now and that's a heck of a lot better than how I was doing this time last month. And at least its the cheapest drug so far in the process!

I've been keeping to the low residue diet the hospital told me to follow after I left and it seems to work great. This of course means I'm eating absolutely nothing healthy so on top of the Prednisone I have that working against me when it comes to not gaining any weight. I have also avoided spicy foods. I have had them twice since starting this diet and within an hour I was feeling the effects of them so I definitely know that is a trigger for me. Before getting diagnosed when I was having symptoms and had no idea what was wrong the only thing I would eat was toast so this diet is so much better than that :ysmile:

 

[my little penguin]

Be careful long term pred has known consequences ( osteoporosis , glaucoma,diabetes, cataracts ,Cushing syndrome )
Bleeding is not normal and should stop if your disease is under control .
Staying on pred is not seeing if Pentasa is working at all.
It's only using steriods .
At 20 mg it will still take months to wean off the drug especially if you haven't started a maintence med.
If you have been on Pentasa more than 30 days then it has already built up in your system to a level if it's going to work it will work .
6-mp/Aza take 3-4 months to build up so you would have to stay on pred until then if you switch meds then wean
Biologics take 6 weeks to work again you would need a pred bridge until then
Mtx takes 8 weeks to work

So delaying making a decision increases the time on pred

No one told us this and what was suppose to be a few days to weeks turned into 4.5 months of pred
With mood swings swollen moon face and lack of growth
I would try to get in the soon the better to discuss your options
FaceTime is important
I would also try to get a second opinion
Ds had three second opinions well worth it for him