Can you tell when you're in remission?

[BigBoss]

For those of you who have achieved or are in remission, was it easy to see that you had achieved remission? I guess I am asking if you could tell that you had achieved remission. Did you "feel" it? Did the symptoms go away? Did the feeling of fatigue disappear, the diarrhea, stomach aches after eating, painful bowel movements, joint pain, etc?
I am just curious because, after my resection surgery, I felt pretty amazing for the first 6 wks. I thought I was on my way to achieving remission. Then slowly, I started to feel similar to how I felt prior to surgery. But, for that 6 wks, I felt something I had not felt in 5+ yrs. I was waking up with energy. I was hungry, and eager to eat, although I was still experiencing diarrhea, it did not seem as painful though.
Last month I went back on remicade, and I do not feel any "better", I am still avoiding eating meals, and have tremendous fatigue, as well as pretty bad joint pain. I never felt the joint pain before surgery, but now i have it almost constantly and it seems rediculous. Anyway, they took blood for tests at the remicade treatment last month and when I met with my GI this week, I asked about the test that measures inflamation levels in the blood, and she showed me they were normal now. Before surgery they were extremely high. [37.5] I am scheduled to have an mri this coming week. I am fearful that everything will come back looking good on the mri. If it does I am wondering, then what happens? I still feel really crappy and have no energy most of the time, pain after eating, painful diarrhea, and nausea. Biggest thing is after I eat, i get pain, but I also get extremely tired with an overall feeling of being crappy as hell, and I feel the need to sleep it off...
So all in all, I guess I am just curious if you could tell or if you knew that you had entered remission. And if you knew you were in remission or you were told you were in remission, did your symptoms disappear. Did you or do you feel "normal"? Thx for all your input.

 

[my little penguin]

Clinical remission is different for being symptom free
Clinical means your numbers scopes and imaging look fine but you still feel like crud.
Things to bare in mind SpA can cause significant joint pain, fatigue and sub clinical Gi inflammation . The blood work for spondyloarthritis also tends to be normal .
Some flare with crohns others flare independent of crohns

Second thing is you can have nerve issues meaning the gut was so inflamed for so long the nerves were hit as well and keep sending pain signals to the brain even if the inflammation is not longer there .
Have you tried a tens unit ? This helps disrupt the signals and really helps with abdominal pain when used over a course of weeks not days.
Also look into what your eating
Ds was in clinical remission but doubled over in pain in the hospital in Jan through April of this years
Turns out his gut wasn't tolerating a lot of the foods he was eating including chicken
Last thing might be something other than crohns going on
Right now in addition to crohns and arthritis the docs think Ds has gastroparesis so ....
It takes time to figure it all out
Good luck

 

[BigBoss]

Thanks penguin. I will keep it all in mind. Noones said anything to me about being in remission, but was just curious. Those 5+ yrs possibly have caused nerve damage, and I have a tens unit, but have not tried it. I hate feeling like this.
Thanks for the info. Im really sorry tour little one is having to deal with this, sounds awful. Hopefully it is under control soon. I most likely had this as a child but everyone just assumed i was faking stomach aches or that i hated eating this or that. Kinda weird how the puzzle oieces fall into place like 30yrs later, kinda that aha moment... wishing you and DS the best of luck. Thanks again.

 

[Scipio]

"Clinical remission is different for being symptom free
Clinical means your numbers scopes and imaging look fine but you still feel like crud."

I think this is backwards. From the papers and reviews I've read, "clinical remission" refers to remission of the clinical symptoms, with or without accompanying clean looking gut by endoscopy. In the context of a clinical trial this is measured by the CDAI symptom score.

Endoscopic remission, sometimes also called mucosal healing, refers a clear-looking gut by endoscopy, that may or may not be accompanied by resolution or reduction in symptoms. In clinical trials this is measured by the CDEIS or SES-CD scores.

Deep remission or sustained healing often refers to a clear-looking gut accompanied by no sign of inflammation by histology exam of tissue specimens collected during the endoscopy.

 

[ronroush7]

I had an enterography and was told I was in remission. On and off, I have had symptoms which made me question the results.

 

[BigBoss]

Thats kinda what im getting at ron, even if there are no biological markers, if thats the right term, for your crohn's, meaning that based on all your tests it shows no active disease. Do people still experience symptoms like diarrhea, cramps, pain, joint pain, extreme fatigue, etc. Or do you kinda know, you feel your energy levels come back, increased appetite, normal bowel function etc. Just worried that they are going to check me out and tell me i have no reason to be feeling the way i do, cuz i feel terrible. I avoid all my meals til dinner basically still. And i stay in bed most days unless i have work to earn money. I know my body, and having that short period of electric feeling after surgery was what i would have thought remission was like. I wasnt perfect, but i def did not feel like i do now.

 

[ronroush7]

I have asked them to recheck me.

 

[wondering]

BigBoss - I understand your concern about tests being normal. I've been off meds for >6 months (with my doctors supervision) and have been having intermittent diarrhea and increased cramping. I'm really nervous that all my testing is going to be normal, because I don't feel normal but also don't want to be an annoying patient and keep complaining!

 

[BigBoss]

Excuse my language, but **** that. There is no reason you should feel like a annoying patient. Thats absurd. I mean, i know that it is not normal, to be 36, and feel like staying in bed all day, my joints are killing me, afraid to eat, not to mention not being able to enjoy anything i qant to eat.
Listen wondering, you should never feel that way, you pay for gealthcare or whatever, you are the patient, and if you arent feeling right, there is absolutely no reason you should feel like a nuisance, or annoying. If you accept feeling that way, then you are compromising your health, and your quality of life. I think you might want to think long and hard about that, and I do not mean to sound harsh or disrespectful. I just want you to think about what is best for you.
I will admit, I myself am nervous if everything comes back clear, but more because I am afraid either they think I am making it up, or that there is possibly something worse, like permanent berve damage or something that will take xxx amount of months to find and diagnose. I am in so much pain and discomfort, at the moment, all i have to look forward to tomorrow, is pain and discomfort, and it has been wearing me down, more and more.
Just know, you need to look out for #1, noones going to do it for you. I have that problem at times as well.

 

[ronroush7]

I agree, BigBoss. We pay them.

 

[BigBoss]

Yessir ron, we surely do, and it sucks when dr.s make you feel like you are a burden, or in my case, that i am not legitimately in need of pain meds. Drives me ******* nits, and they make me feel like a pill seeker, but thats a different conversation for a different thread.

 

[D Bergy]

For myself, the best indicater I have is the lack of mucous in the stool. No mucous means little or no inflammation.

Typically, I have no pain until things are too far gone. The lack of symptoms has caused me to suffer greatly at a later time.

I am grateful and at the same time disturbed having little in the way of an early warning system for when things are not as they should be.

Dan

 

[wondering]

It's just hard when doctor's make you doubt that you know your body. Part of my problem is that I've never had the more typical symptoms like bleeding or severe diarrhea. My main symptoms tend to be nausea, fatigue and decreased appetite - all of which is easy to attribute to stress or anxiety! When I was getting diagnosed, I went to see a psychiatrist after getting told by my PCP that all of my symptoms were stress and it was the psychiatrist who told me I need to go see a GI

 

[DEmberton]

I am just curious because, after my resection surgery, I felt pretty amazing for the first 6 wks. I thought I was on my way to achieving remission. Then slowly, I started to feel similar to how I felt prior to surgery. But, for that 6 wks, I felt something I had not felt in 5+ yrs. I was waking up with energy. I was hungry, and eager to eat, although I was still experiencing diarrhea, it did not seem as painful though.

Same thing happened to me. The first 2-3 months were great; I felt so good and started feeling all optimistic that this was going to be my life from now on. But then the tiredness and stiffness started to come back, the latter seemingly worse than ever, though the bowel issues were never that bad. The 1 year colonoscopy showed some ulceration of the old Terminal Ileum so clear evidence the disease was doing something, but I don't know if that was significant enough to contribute to the symptoms.

What confuses me slightly is I don't know how much is caused as a direct result of the surgery (i.e. bile acid malabsorption plus not having an ileocaecal valve) and how much is as a result of this inflammation. Plus how much can just having Crohns cause symptoms without active inflammation.

 

[Madhu]

My husband's GI told us at his recent colonoscopy that he is now in clinical and endoscopic remission. Meaning the labs are clear, the scope also showed that his colon is now healed and my husband feels normal, symptom-free. This is only w.r.t his colon though. Havent checked his intestine yet. He wants to do the MRI only after Feb or Mar'16.

Feel better soon X

 

[Scipio]

"based on all your tests it shows no active disease. Do people still experience symptoms like diarrhea, cramps, pain, joint pain, extreme fatigue, etc."

GIs strive hard with the therapy to achieve a clear-looking gut as assessed by endoscopy (healed mucosa) because that is the better indication of the true state of the disease and long term outlook rather than relying solely on symptoms. But of course the shared goal of both the GI and patient is remission of symptoms as a result of the healed gut.

Unfortunately, it's fairly common for there to be a misalignment between how the gut looks and how the patient feels. It can go in either direction:

1. The patient feels fine but the gut shows big ugly ulcers. Docs worry about this because they know that the disease is progressing and will result in long term and permanent damage. They worry that the patient will reduce or refuse treatment because they feel okay, and thus they end up with much worse disease in the long run.

2. The gut looks fine and the biomarkers are low but the patient still has symptoms and is not feeling well. This is unfortunately fairly common. All GIs have seen it and, assuming you have been following doctor's orders, there is no reason for you to feel you have let your doctor down or have somehow failed. It's not your fault. If your doc is scolding or shaming you over this you need a new doctor. There are several reason why this situation might arise:
a). The therapy is starting to fail but it hasn't started to show in the appearance of the gut yet. It might be detectable only on histology or small bowel MRE and not visually apparent in the colon.
b). Your Crohn's is in fact under control, but you have come down with another condition that can cause many of the same symptoms such as IBS, a bacterial infection, or bile acid diarrhea due to surgery, etc.