Do you ever feel fully well between flares?

[Matt645]

I’ve had Crohns for over 12 years and I’ve had my fair share of nasty flares but the trouble is even between flares I rarely feel completely well, is it usual to have what I can only describe as a slight stomach ache that comes and goes? It’s like 10 minutes of mild pain then 20 minutes of feeling ok?

Also when you are in remission do you have normal stools? Mine are mostly soft and loose but occasionally I get a normal one, in fact the only time they were consistently hard is when I stopped taking the meds for 2 years, I felt great but the problem was I bled a little during that time and once I told the doctor he put me back on Asacol which seems to exasperate the symptoms but stopped the bleeding… can’t win!!

I was just wondering if what I describe is considered normal?

 

[Jeff D.]

Right now I am feeling pretty well except that I can't sleep. But other than that I have been feeling pretty well. I hope you can start to feel better soon. Good luck. If you are having pain then I wouldn't think you are in remission. I think you should talk to your GI about that. Best of luck

 

[BWS1982]

My Crohns is a bit more rebellious, I was in remission for 4.5 months a year ago, but before that, a 7 month flare, and now I'm in the middle of a nearly 10 month flare, I don't really get better. It's just bad and worse for the last 10 months, and when not flaring for the 4.5 months, I felt "cured", and it was amazing. I want it back.

 

[Colt]

No. If nothing else my intestines still feel sore either on their own, when I move and exert myself, or (the best possible scenario) only hurt when my intestines are poked, prodded, or otherwise touched.

 

[Wiles]

I think it's pretty normal to not feel 100% well while in remission. I still have D most of the time, and the rare occasion it is formed it is still very soft. I like it better that way though because I seem unable to pass harder stool normally anymore. The one time it happened in the last few years was a hellish experience. I've had Crohn's for over 10 years, and in that time it has done damage to my body that won't go away even if I was miraculously cured of Crohn's.

 

[My Butt Hurts]

After my initial diagnosis, I felt very normal and all I was on was sulfasalazine.

Right now I feel very good, and I have just come out of a very very bad flare last lasted almost a year. I have been on Humira for over 3 months and I feel very good. 95% normal.

 

[drew_wymore]

I'm feeling pretty well although the GI hasn't given me the "you're in remission" speech or anything. I have some days where I don't feel so hot but its much much better then when I was flaring. I suppose it depends on the severity of the disease and how much damage its done as to how you'll feel when you're not flaring.

 

[Matt645]

Thanks for the reassurance guys I just wanted to know if what I experience is normal or do I have just one long rumbling mild flare, in all the time I’ve had crohns I don’t think its spread out of the right lower side of my bowel and its never been as bad as my original flare… that was absolute hell!

I should appreciate that I don’t have it as bad as some people on here but having soft stools and a mild ache every now and then is a constant reminder of this horrible disease.

Does anyone else get acid? Some days I really suffer with a burning sensation right in the middle of my abdomen just above my stomach, I find exercise (especially swimming) is a really good way of getting mentally fit and a nice gentle workout for the stomach/bowel region but I often have to stop as I keep burping up acid, I suspect this is crohns related but I can’t be sure? I’m due to see my doc soon so I’ll ask him about it then.

Take care people.:bigwave:

 

[butt-eze]

I am in remission. I don't feel normal. My BMs are normal and formed. I have fatigue and joint pain every day.

As for the acid in your stomach. I can not go without my nexium. The doctor has said this is common for people with crohn's. I have to snack on tums if I miss even one dose of nexium.

Amy

 

[Creepy Lurker]

I'm in remission at the moment as well.

I never feel 'Normal' and have been told that I never will. The damage to my digestive system is too great.

 

[elp888]

After my first resection surgery I felt really good, without any special diet, for about 12 years. Of course occasionally I would have some belly ache/D, but nothing serious. I can honestly say that for the most part I felt 100%. Until december....
Everything happened all over again, and the last 6 months have been dominated by my CD. Had new resection surgery on the 16th of May and officially i'm in remission now. I have to admit i'm a little weak from the operation, but other than that feel quite good and can eat anything again
I am hoping to stay in remission, feeling 100%, for at least 12 years again...fingers crossed

 

[teeny5]

I know this is a really old thread, but I was wondering the same things. I haven't had it very long...less than a year...and I have maybe a day here and there where I feel "normal" but usually I feel achey at the least. I too feel like my intestines are sore and feel tired a lot. I haven't slept through the night since this all began. Don't usually have to go to the bathroom, but wake up soaked in sweat or just flat out uncomfortable. I get gas a lot too that just hurts my tummy!

Anyway, now I don't feel crazy for never feeling 100%. Thought maybe I was just thinking it was crohn's and it wasn't...sounds like it is the crohn's.

 

[ozguts]

I have been diagnosed with Crohn's of the small bowel, coeliac (celiac to you North Americans), and IBS. I've never had the horrible lows I've read about, but I've never felt good either...in fact if anything I'm gradually getting worse. I get nausea (sometimes with dry retching) often, upper wind, lower wind, bloating, pain of varying intensity, difficulty sleeping, and various bowel 'types'. I don't think I've ever had a 'remission' that I could identify.

Drugs seem to improve some things sometimes but other times make things much worse. I was on Pentasa for example and I had mucus stools and normal mostly rather than d, lots of lower wind, almost a constant level of nausea but generally less abdo pain, less periods of higher level nausea, and better sleep. I still have the lower back pain no matter what though....I use a Tenz machine before bed to cut out some of the pain. Really not sure if I should go back on Pentasa, but I'm seeing a new gastro to ask in a couple of months. He'll probably try a few other drugs too.

I like the idea of having some time off so I could regain confidence and not be constantly aware of the illness. I may get a couple hours where I feel okay only to suddenly feel poor, and that tends to keep me limited. However, if it is true that I have IBS too, then I'd never be able to tell if my Crohn's is not the thing making me feel poor!

 

[milesrlv]

I am currently in "remission" and have not had a normal bowel movement either... always diarrhea with many times the normal amount of bowel movements per day. No serious pain though.

 

[BWS1982]

This begs the question, what is remission to each of us? Look at my post above and I felt like I'd never had the disease for 4.5 months a year ago when I was in "remission"...yet a lot of others still have D...I keep wondering now, is that remission, or how is remission defined? I was always told that remission is a "absence of symptoms" and since D is a symptom, as is my fatigue etc...I assumed that that meant not remission yet....I felt great for 4.5 months, so that is remission to me. This is quite curious....

 

[My Butt Hurts]

Remission for me personally means living my life normally with no urgency, no crapping my pants, not getting up to crap in the middle of the night, and most importantly not having to know where the bathroom is every 10 feet.

I was very very close to remission for 4 months on Humira, all I had was a bit of urgency, but I only went twice a day - morning and night - so I felt almost completely normal.
Remission seems always just out of our reach.

 

[ozguts]

Remission for me personally means living my life normally with no urgency, no crapping my pants, not getting up to crap in the middle of the night, and most importantly not having to know where the bathroom is every 10 feet.

I was very very close to remission for 4 months on Humira, all I had was a bit of urgency, but I only went twice a day - morning and night - so I felt almost completely normal.
Remission seems always just out of our reach.

Is the Humira not helping anymore? I'm sorry to hear that you are having such a hard time with d.

 

[wi_girl]

I have had non stop diarrhea since being diagnosed in february 2006.So even between flares not a single day can go by without my being reminded I have it.Whats really odd is that if I stretch or put a heating pad on my lower back I tend to have to run for the bathroom right away.I hate not being able to stretch.That also means I can never stand up fully staright.

 

[teeny5]

If I twist my abdomen I often get pain...sleeping on my sides is usually not an option either I start cramping up pretty bad.

 

[BWS1982]

This is still very odd, anyone else under the impression that "remission" is an absence of all Crohns symptoms? I had that for 4.5 months, as if I never had it. Not a single symptom.

 

[teeny5]

That is what I had thought remission was...but I have yet to experience it. I am hopeful that it is possible.

 

[Isla]

I was under this impression as well because of the CDAI (Crohn's Disease Activity Index)

 

[theability]

I haven't been pain free in almost a year!!! I have been currently fighting this flare since March 2nd, with no real episode that I would consider, remission or anything I would care to call, relief, since I have been on pain management, Narcotics, SSNRI"S for chronic pain, plus all the rest of my crohns arsenal, its been quite frustrating to say the least.

As for my bowel movements, if I eat one wrong thing, it changes in minutes......

..the burning in my RLQ continues!!!! .....