What is Crohn's remission like

[Kas8173]

Hi, my first post. I was diagnosed with Crohn's in March, so only 5 months ago.
Relatively new to having Crohn's. I only started having symptoms in November 2017, and previous to that I have never had any Crohn's like symptoms my whole life. I am 26.

I wanted to know, for those who have had Crohn's for many years, and those who have achieved remission, how long has remission typically lasted for you and what have your symptoms been like during remission?

I mainly wanted to know if during remission, do you have no symptoms at all and things are completely normal, or does remission just mean you have less symptoms, and they are minor?

A bit of a background, back in March I was having unbearable stomach pain, fever, night sweats with bed sheets drenched, extremely foul smelling diarrhea, blood in diarrhea.

Now with the help of pentasa and budesonide my symptoms are ten times better than they used to be, but I still do have minor occasional diarrhea. Stomach pain is about 1/10, as in I know it's there but it is hardly very painful and I can just ignore it.

Is this as good as it gets for someone with Crohn's or can remission be better than this? Should I just learn to live with these minor symptoms for the rest of my life?

 

[theflightless]

remission can be complete, to the extent that you could not be aware of any Crohn's symptoms and your blood work demonstrates no significant elevation in neutrophil activity or decrease in hematocrit. This is the ideal case, and for the TNF-alpha drugs, it is the early treatment case for about half of patients.

If you are on anti-tnf-alphas, tnf-alpha being a signal at the top of a cascade that turns on inflammation, there should be very few inflammatory signals escaping the medication's binding(antibodies have very high affinity) before decomposition.

There is also evidence that the scd or EEN composed of only monosaccharides can induce complete remission. That explanation is a bit more complicated.

Dosage and immunization to the anti-tnf-alpha both play a part, with the latter being genetically modulated and variable by person. Higher dosage and a naive or early immunization status make it more likely that remission is complete.

The decision to be made however is complicated. It's generally better to stay on a medication that you are ok on, but it's generally bad to stay on a medication that harms your quality of life. You should determine if your quality of life is impacted, and if it is, there may be non-medical ways to alter lifestyle to increase quality without changing medication. This secures a baseline sense of wellbeing, at the cost of components of lifestyle. How much each of those plays into quality of life is subjective.

 

[Tuff]

I am currently in remission, and have no symptoms. My doctor wants to do a colonoscopy in October to confirm clinical remission, to make sure there is no inflammation present. I can still get diarrhea if I eat the wrong things, there are foods that don't agree with me anymore. You could try a food diary to keep track of things you eat and the symptoms you get, to try to pinpoint what you should avoid.

 

[Bufford]

I find that Crohn's goes in waves of remission and inflammation. Right now I am in remission, the disease is still active but at a much lower level. It never goes away totally, I still feel the symptoms but they are low.
inflammation can come back gradually or it can come on strong. It comes on without notice and there is little I can do to stop it, but rather control it through medications. All I can do is ride it out until the next wave of remission.
What I have noticed are that the levels of remission are getting larger as I age, and the inflammation can be better managed than it was when I was younger.

 

[D Bergy]

I have been in remission for over six years now. Basically I can eat and do anything I could prior to getting ill.

No blood or mucous in the stool any longer. No pain, no fistulas, strictures all of which I experienced before.

Since my iliocal valve was removed I do have to use cholystaramine if I am on the road or bathrooms are not necessarily going to be available as I haven’t found a good non drug substitute yet. Other than that its back to a normal life.

Dan

 

[Guerrero]

remission look to normal life except you can have some mild symptoms and you need to have a treatment and do check ups every year.
Usually a good treatment like biologics if it works on you should give you years of remission. But everyone is different some are lucky some are less and are waiting for new treatments.

 

[RenLPC]

As others have said above, I would highly recommend a food diary and altering your diet to try to cut out the things that are triggering you and increase foods that are anti-inflammatory.

I have been in remission since my surgery which I attribute to my diet and lifestyle changes. There are periods of time when eating the wrong things will set me back, but when I stick to my "good foods" list I'm virtually symptom free.

 

[Kas8173]

Thanks for the advice all.

I do keep track of my food, the only things that seem to make a difference for me are that eating more fruit seems to help, and eating meals high in fat, particularly saturated fat definitely make things worse.

It is interesting that a CDAI score of < 150 has been defined as "remission". In my opinion this seems somewhat high. A CDAI score of 150 still allows for some quite debilitating symptoms, and most replies here say that remission should be more or less symptom free.

Based on the replies here, if I am still having D, with a small amount of blood and small amount of stomach pain then I am not in remission. I will probably have to step up my treatment to avoid cumulative damage to my intestines.

I am having an MRI in 2 days time so we will see what that shows and I'll discuss with my doctor.

 

[Scipio]

It is interesting that a CDAI score of < 150 has been defined as "remission". In my opinion this seems somewhat high. A CDAI score of 150 still allows for some quite debilitating symptoms, and most replies here say that remission should be more or less symptom free.

I agree. While reducing the CDAI score to less than 150 is a worthy goal, especially for patients with severe disease, you can still be suffering some pretty unpleasant symptoms and score lower than 150. That's why I hate to see the 150 be the only goal in clinical trials. I would call getting below 150 a "response" to the medicine rather than a remission, and I would definitely not define the <150 mark as a "cure" as I have seen done on some threads on this board.

Basically, the 150 mark is a legacy from prior clinical trials. The FDA accepts it as a mark of therapeutic success, so it has become a rather traditional study endpoint. So when you see a news story in the popular press about some new treatment that that purports to cure Crohn's or put it into remission, what it likely really means is that it did reduce the symptoms but by no means did it bring the patients back to the way they were before they got ill.

 

[Tuff]

I did an online CDAI test and scored 22. :dusty:

 

[my little penguin]

Also understand 5-Asa(pentasa ) are only treating the first layer (surface of your intestine )
And not the underlying layers - so inflammation can be allowed to simmer .
30 days off steriods and on oentasa only will tell
Cocrine report does not recommend pentasa as a monotherspy for Crohns
Only for UC
Current drug recommendations for Crohns is in this thread


remission
Basically mostly pain free
Next to no diarrhea/constipation
Able to live your daily life without much though to symptoms
Add in clinically allscopes imaging looks good


Mri should be clean if you have been on steriods though
And won’t tell if there was Disease there prior to steriods

https://www.crohnsforum.com/showthread.php?t=84107

 

[Guerrero]

Thanks for the advice all.

I do keep track of my food, the only things that seem to make a difference for me are that eating more fruit seems to help, and eating meals high in fat, particularly saturated fat definitely make things worse.

It is interesting that a CDAI score of < 150 has been defined as "remission". In my opinion this seems somewhat high. A CDAI score of 150 still allows for some quite debilitating symptoms, and most replies here say that remission should be more or less symptom free.

Based on the replies here, if I am still having D, with a small amount of blood and small amount of stomach pain then I am not in remission. I will probably have to step up my treatment to avoid cumulative damage to my intestines.

I am having an MRI in 2 days time so we will see what that shows and I'll discuss with my doctor.

Also consider it takes time to go from a crisis to remission... treatments take time to fulli kick in. I'd say roughly 3-6 months in my experience. Liquid diet like modulen helped me a lot to go in remission quicker but it's tough and not enough to reach full remission.

 

[The Real MC]

As others have said above, I would highly recommend a food diary and altering your diet to try to cut out the things that are triggering you and increase foods that are anti-inflammatory.

I have been in remission since my surgery which I attribute to my diet and lifestyle changes. There are periods of time when eating the wrong things will set me back, but when I stick to my "good foods" list I'm virtually symptom free.

Precisely how I kept CD in remission

 

[hikerneil]

I had extremely active case of Crohn's when I was in my teens and early 20's. It was horrible. I had numerous treatments of steroids in an effort to control my symptoms. Eventually I had bowel resection surgery and my symptoms subsided. I have been in remission for 32 years (surgery was in 1986). I am currently having colonoscopies done every few years. My GI doctor sees some mild signs of Crohn's type inflammation, but I am experiencing no physical symptoms.

I know and realize that I am extremely lucky, but I am also extremely careful with my plan to control the disease and the return of symptoms. My efforts include:
1. I watch what I eat. I limit foods with spices and preservatives. If I eat foods that are high in either I know that I will experience abdominal pain, bloating, and diarrhea. I also cannot and do not eat much beef, especially steak. If I have steak 2 nights in a row, I can guarantee I will have issues.

2. I maintain an extremely physical active lifestyle. I have seen theories that it is possible to produce levels of endorphins that reduce inflammation in your gut. This makes sense to me, I don't care if others agree or disagree with this theory. Something is working for me. My exercise routine = bike 50 miles every other day, walk 8-10 miles on the other days. 0 or 1 day off per week. It amounts to about 3.5 to 4 hours of hard exercise per day, every day. I am 58 years old.

My regimen is detailed above for informational purposes. It may or may not work for anyone else. It works for me......

 

[Guerrero]

Very interesting hikerneil. Thanks for sharing it