What was remission like for you?

[MizzSarah]

For those of you that have experienced remission at one point what was like that for you? I know people often mistake the term remission as your not going have the problem ever again or your going to be symptom free but we know that is not the case.

I'm 'supposedly' in remission which I have a hard time dealing with as I'm just as miserable as before. Could use some insight here

 

[Cat-a-Tonic]

I spent a few years in remission so here is my experience - obviously, others' experiences may vary, as we're all pretty different.

When flaring, I tend to lose weight, and when on steroids, I tend to gain weight. In remission, I was able to gain or lose like a normal person would. If I ate too much I gained, if I exercised and ate less I would lose. It was weird to be normal in such a way after so predictably gaining or losing due to disease and meds. I was able to exercise regularly and I got in pretty good shape - there were a few things I wasn't able to do, like jogging as it was too hard on my arthritic hip joints, and abdominal exercises would make my belly quite uncomfortable and it would also make my GERD act up, but as long as I avoided things like that, I could pretty much exercise as much as I wanted. I wouldn't say I ever felt 100% like my old self, but on some days I was a solid 90 or even 95%. I couldn't eat anything I wanted, I still had some trigger foods (and some foods would also trigger my GERD), so I still had to be careful about what I was eating. For the most part, though, as long as I took my meds and supplements and watched my stress level and didn't eat trigger foods - I was pretty darn normal and well. I still had a few bad belly days here and there, but I think that's true for normal people as well (like, eating something that doesn't agree with you, or getting a 24 hour tummy bug, etc). remission was wonderful - it didn't let me forget that I have a chronic illness, but it sure let me push that to the back of my mind much of the time. And the exercise kept the depression side of things well away, so I felt much happier in general. It was a really good time. I hope to get back there someday!

 

[ronroush7]

I would keep pushing until you get some answer from your doctor.

 

[my little penguin]

DS is in remission from crohns side of things
Meaning no evidence of active disease on any tests including scopes /imaging and
No others signs of flares
That said we quickly found out crohns is the gift that keeps on giving
Extra intestinal manifestations
For ds this is juvenile spondyloarthritis which flares whenever it wants even if his gi tract is fine

Gastroparesis which causes nausea and abdominal pain as well as trouble eating normal amounts of food . Ds takes meds to help some with this but must also take in formula to make up the calorie difference

Eye issues which are related to his Sweets syndrome (another rare eim of crohns )

Sweets syndrome causes fatigue rashes flushing joint pain flu like symptoms and painful lessons

So while ds is technically in remission from crohns
He still has tons of extra stuff going on that can make it seem like his crohns is not in remission

When you still don't feel good please consult your doc and remember not all that makes you feel bad is simple crohns
We made that mistake too many times only to find ds actually just had an EIM
We didn't know about

 

[MizzSarah]

The most frustrating thing for my Crohn's was that on none of my test was there ever any sign of Crohn's. Symptoms were present. Elevated inflammation but nothing too concerning. Everything blood related was normal. My colonoscopy was the on,y thing that came up with anything.

That's why I have a hard time believing I'm in remission. Because technically i was never active.

Anyone can relate?

DS is in remission from crohns side of things
Meaning no evidence of active disease on any tests including scopes /imaging and
No others signs of flares
That said we quickly found out crohns is the gift that keeps on giving
Extra intestinal manifestations
For ds this is juvenile spondyloarthritis which flares whenever it wants even if his gi tract is fine

Gastroparesis which causes nausea and abdominal pain as well as trouble eating normal amounts of food . Ds takes meds to help some with this but must also take in formula to make up the calorie difference

Eye issues which are related to his Sweets syndrome (another rare eim of crohns )

Sweets syndrome causes fatigue rashes flushing joint pain flu like symptoms and painful lessons

So while ds is technically in remission from crohns
He still has tons of extra stuff going on that can make it seem like his crohns is not in remission

When you still don't feel good please consult your doc and remember not all that makes you feel bad is simple crohns
We made that mistake too many times only to find ds actually just had an EIM
We didn't know about

 

[eleanor_rigby]

The most frustrating thing for my Crohn's was that on none of my test was there ever any sign of Crohn's. Symptoms were present. Elevated inflammation but nothing too concerning. Everything blood related was normal. My colonoscopy was the on,y thing that came up with anything.

That's why I have a hard time believing I'm in remission. Because technically i was never active.

Anyone can relate?

I can relate; normal blood work, normal CT scan and MRE, fecal calproctectin in the 60s... but colonoscopy showed inflammation and ulcers at terminal ileum. After a bowel resection in 2011 I was in remission and felt AMAZING. It was like I had never had any bowel problems and never would again. I had so much more energy and would work 6-7 days straight. I went travelling with friends and got around a dozen flights. It really was like I didn't have Crohn's.

 

[Molly1997]

I've not had a flare up in three years, so have effectively been in remission since then. But I have never ever been symptom free? I don't understand how a disease can be in remission but still show signs that it's active. Does that not potentially mean something is happening. Is there genuinely nothing they can do for some people in terms of their symptoms.

 

[MizzSarah]

I've not had a flare up in three years, so have effectively been in remission since then. But I have never ever been symptom free? I don't understand how a disease can be in remission but still show signs that it's active. Does that not potentially mean something is happening. Is there genuinely nothing they can do for some people in terms of their symptoms.

That is something I wondered as well. Haven't been in remission for long, I was just told mid October and I'm far from symptom free. What's the point in being given that title when it may mean not active but your still dealing with symptoms. I know there is no cure so isn't being told your in remission kind of misleading?

What are some of the symptoms your experiencing?

 

[Molly1997]

Yes! I completely understand where you're coming from, I have no idea why they say "remission" but I have recently been to the hospital and they're changing my medication. If you're not happy about your quality of life & your condition is affecting your day-to-day life, speak to the doctors. They are there to make it easier for you..
It's difficult because you're technically "fine" but "fine" to me for a long time has meant "I'm not in hospital" but it shouldn't be like that!
I suffered from pain on a daily basis, fatigue, joint pain and compaction. I hope that you get sorted like me, I'm hoping my new meds will mean I'm much happier in my daily life x

 

[greenjericho]

We never realize how sick we are until we are in remission, and when we are sick for a long time we tend to forget what its like to even feel healthy.

When I was in remission I rarely thought about my health or my disease.

I ate fast foods without thinking about whether I was going to pay for it in the morning.
I drank alcohol until late into the night.
I backpacked around developing countries and ate foods that I had never heard of before.
I exercised at the gym and saw myself become stronger equal to the time and effort I put in.
I went out on dates and had relationships with girls without having fear about a symptom that might pop up.
I could plan for my near future without the hesitancy of knowing whether my disease would hold me back or not.
I really just felt like a normal person.

Now, I haven't had this disease for too long, and either than the crohns I have no other health issues, so perhaps I am being to optimistic as to what one should expect from remission. But now that I am sick I feel that I have an obligation to allow myself to feel like a normal person again, and that my doctor should do anything in their power to get me to that point. So, Ill keep keep on fighting until I get there.

 

[eleanor_rigby]

We never realize how sick we are until we are in remission, and when we are sick for a long time we tend to forget what its like to even feel healthy.

When I was in remission I rarely thought about my health or my disease.

I ate fast foods without thinking about whether I was going to pay for it in the morning.
I drank alcohol until late into the night.
I backpacked around developing countries and ate foods that I had never heard of before.
I exercised at the gym and saw myself become stronger equal to the time and effort I put in.
I went out on dates and had relationships with girls without having fear about a symptom that might pop up.
I could plan for my near future without the hesitancy of knowing whether my disease would hold me back or not.
I really just felt like a normal person.

Now, I haven't had this disease for too long, and either than the crohns I have no other health issues, so perhaps I am being to optimistic as to what one should expect from remission. But now that I am sick I feel that I have an obligation to allow myself to feel like a normal person again, and that my doctor should do anything in their power to get me to that point. So, Ill keep keep on fighting until I get there.

This was exactly the same for me after my bowel resection. For three years I felt amazing and travelled the world without a thought or concern about my bowels. I felt like a normal person. In fact my boyfriend had more bowel issues than I did and he has no health problems.