Short flare-ups

[Everlong]

Hi everybody. This is my first time posting here.

I am just curious how long flare-ups usually tend to last for people? My flare-ups usually last only a few days, unless I am under constant stress for longer.

A few weeks ago, Canadian Thanksgiving, I started getting some blood and feeling a bit under the weather. It lasted two days then went away and I haven't had any symptoms since.

From what I understand, flare-ups are supposed to last several weeks. Is it possible for flare-ups to be this brief? Is it possible this wasn't a flare-up but something else?

 

[atcig]

What what I've seen and read they can last from a days to years.

 

[shazamataz]

Welcome Everlong,

I can't answer your question as I am still relatively new to this and also stil on Pred and not really having any symptoms at all apart from fatigue.

Just wanted to say, though, I love your name - it's my fav song

 

[Everlong]

Thanks for the reply atcig. When I told my doctor last week about the 2 day flare around Thanksgiving, he was shocked. He seems pretty certain that flare-ups have to last at least a few weeks to really be a flare-up. I think he thought I was lying to him or something. It was leaving me a bit confused about what I have been experiencing.

Thanks for the warm welcome shazamataz! Its my fav song too . Fatigue is my only real day-to-day symptom as well, at this point. It is a strange disease. Until I was diagnosed I never would have guessed anything was wrong.

Would be great to hear from more of you about your experiences.

 

[shazamataz]

Hey Everlong,

Have you actually been diagnosed with Crohns? I just wondered because oerhaps you don't have it and that would be a good thing right? The mini-flares sound more like Irritable bowel, however I am no expert?
What about meds? They can mess you up as well as the disease.
Definately tell us more sbout yourself if you want to, makes it easier for us to share too and be helpful

 

[PERDITA]

Hi Everlong - before I had my surgery I was having pain constantly - afterwards nothing for a year then gradually coming back so that now tend to have one week ok and one week not, sometimes it is because of something you ate and sometimes well sometimes there is no reason for it at all - if you are having mini flare ups you may be able to check to see if you are eating anything in particular which may have set you off. Good luck.

 

[Everlong]

Hi Perdita. Thanks for sharing your experience. I was wondering if it might have been food related. Something I might have ate at Thanksgiving time that wasn't part of my usual diet.

Hey shazamataz. I have been diagnosed. It was about 7 years ago now. Here is how I was diagnosed.

Since then I have had a few bad flare ups. One that was within a year of my diagnosis and was really strange. My entire mouth and esophagus were completely covered in canker sores (even my uvula!). They lasted about 3 weeks and I barely ate or drank anything because it was too painful to swallow. Unfortunately, at the time my knowledge was very limited and I didn't clue in to it possibly being Crohn's related, so I didn't go to my GI to get checked out. I can't officially say it was CD, but its highly suspect!

I didn't really have any serious symptoms for a long while and wasn't on any meds. About 2 years ago I started experiencing some blood and my doctor prescribed me Pentasa. I have been on that since, but I'm not sure how much difference it is making for me. Its hard to compare before and after when I wasn't feeling too bad in the first place.

I am currently in the process of seeking out a new GI and getting a second opinion on my condition. For the past year my current GI has been attempting to take a very aggressive approach with my treatment (I have been reluctant though), has been having trouble accurately recalling my previous appointments with them (or even remembering when the last time I visited was, sometimes just 2 weeks later), and giving me inconsistent information from one visit to the next. I know that my doctor is very knowledgeable and an expert in said field, but all of this has been making it very difficult for me to feel comfortable with their expert opinion. I find that I am second guessing everything I'm being told and I am hesitant to move forward with what has been advised for me. It just feels like the disease is being treated, not me.

I am not expecting this new second opinion to reverse my diagnosis or anything. I have accepted that I have the disease and and I am prepared to live with it the rest of my life. I am just hoping to get a better assessment and understanding of my individual condition and how to treat it appropriately and why it should be treated that way. Right now I don't feel I am getting any of that and feel like I'm in the dark and have to take a leap of faith with whatever I'm being told (sorry for the cliches :ybatty: ).

Other medications that have been recommended are Imuran, Prednisone, and Remicade. These three were recommended all at the same time when I was experiencing a flare-up. I coincidentally had a long scheduled appointment at the same time as this flare-up, and I think the doctor ignored me when I said my symptoms had only been for a few days. I didn't feel comfortable at all with the decision and instead decided to wait it out. I started feeling fine again 3 days after the appointment and discussed how things went during my followup 2 weeks later.

Since then, I have very recently been getting pushed towards Imuran. After much thought, I have decided I am comfortable with taking the step up to Imuran, but want to get the 2nd opinion first. I have been told the plan with the Imuran is to prevent the disease from progressing, which is why I am comfortable with the idea. My greatest fear is that despite feeling fine on the outside day-to-day, that the disease is actually getting worse on the inside without me noticing. Although the other potential health risks it opens up are concerning as well, if Imuran can give me peace of mind with the prevention, thats great!

Anyways, I am going to stop there. It is easy to just go on and on when you feel confused and frustrated about something, which obviously I have been. Thanks for reading! (if you've made it this far! )

 

[shazamataz]

Hi Everlong,

It is frustrating dealing with a public health system isn't it? You have that in Canada, yes?
While we don't have to worry about money,. we can get stuck with some rubbish doctors. I live in a relatively small city and there is only one public hospital so I have to put up with who I get. I feel they are too busy to be actually interested in me, just getting a hold on the disease.
I was only diagnosed in July and have been tapering Prednisone since then. I asked to extend this a little so I could have a think about Imuran as I am REALLY uncomfortable with it. I send my GI some information about 3 weeks ago regarding LDN and asked him to get in touch with any thoughts and have heard nothing, tho i see him next monday.
I hate that you have to do it yourself to some extent as all they do is give you the 'standard' treatment with no consideration of you as a person/lifestyle/fears etc.
But, at least we get treated without having to worry about goin bankrupt eh!?

You ever seen the Foo Fighters live? I have 2x - awesome

 

[Everlong]

I've seen them twice also. They put on an awesome show. I was actually at the concert for their Everywhere But Home DVD. It was great! That was my first week out of bed after almost 4 months recovery from my abscess. I was about 110lbs and front row centre haha (wasn't able to last more than about 2 songs in that massive pit though!). I saw them again when they were touring for In Your Honor.

I was very uncomfortable with Imuran too, and I still am to a degree. It didn't help that it was suggested to me the same as Remicade was a year prior. To be honest, I actually recognized the same speech from the Remicade pitch. It was as if a script were being recited or something. Really destroyed the illusion that this was being done based on my condition :voodoo: . Talking to my family doctor after though, Imuran didn't sound so bad anymore. There are still concerns, but if I'm running the risk of my disease getting worse I think it is the better route to take.

That sounds very frustrating to have to deal with, not having another doctor to have the option to go to. At least you are seeing them soon to discuss in person. Hopefully you will be able to get some of the answers you are looking for. Whatever happens though, don't move forward with anything unless you feel comfortable and confident about it.

This is the first time I have heard of LDN. I just did a quick search on here and Google and it sounds interesting. Hopefully it continues to pick up steam. Has there been more research done recently with it and Crohn's? The latest one I found was 2006.