I have a question to ask about remission

It took some time for me to get into what I would consider a real remission, which lasted 9 years, or until 6 weeks ago. I had an ostomy for the first 4 years of that, so I can't tell you about the poop part. I can say I felt markedly better. The fatigue was just plain being tired, but I could move through it in a way I couldn't do with the CD fatigue.

My appetite was awesome!

I will say that I did suffer bouts of bad eczema and in the last 5 years and developed crohn's related tendonitis in my right hand and shoulder.

After I got reconnected I had some more digestive issues, short bowel being the big one, but I took Cholysteramine so I was not chained to my toilet.

So, yes, I felt healthier in remission than I did when flaring. Definitely.

From what I have read here and elsewhere, once you show your first signs of Crohn's it never really goes away. I was "in remission" for a few years between my first major flare and my recent problems that started last year. What remission meant to me was more regular bowel activity, more energy, almost no abdominal discomfort. The problem is you have to keep taking the maintenance medications, and I had to watch out for certain foods and include certain foods. Those things remind you daily of your disease. I would have the occasional day or days when I felt abdominal pain or had more active bowel activity. It wasn't really flaring, but it was a reminder.

I think that it is important to accept that the disease is not going away, and to come to an agreement with it! Much like I made an agreement with the rat that lived in my garage. I left him alone as long as he was in the garage. The minute he started to move out towards my house was the day I called in the exterminator. When I have to, I pay attention to my Crohn's and bump up my medication, go on a low residue diet, or break out the prednisone! Other than that I try to coexist peacefully.

Yes, well, it never seems to understand the importance of work.

I hope you have resources you can rely on, those you will need. I hope that you have friends and or family you can rely on. Time to rally your forces.

How's the prednisone going?

I am currently considered to be in remission. I will tell you that I do feel better, but that there are still bad days in there. Many of us also suffer with the occasional IBS attack too. I know thats what happens to me when I am too stressed. Others might call these mini Crohns flares, but without any inflammation occuring, I know them to be just IBS attacks. Good luck!

My Crohn's is clinically in remission but I still have symptoms and still have to watch what I eat...nothing like a disease free person would experience.  There have been times when I don't have to watch what I eat nearly as much as other times.  Lately, I've been taking about 3 pills a day for stomach spasms (in addition to my 20 or so other pills) and had horrible stomach pains on Saturday (laying on the floor screaming, thinking I was going to die), so the gut by no means has been quiet.  But, there is a lack of other symptoms and a lack of ulcerations, so I am in remission.  I am at a healthy weight now.  But, my "Crohn's related arthritis" has been in a constant flare for 15 months and nothing works for that (what does work raises my liver enzymes and I can't take it anymore).  I've heard that if your Crohn's is in remission then the arthritis should be as well, but that is not true for me.  So, remission for me is DEFINITELY better than a flare...I can eat and I can function...but it is by no means living like I did before I had Crohn's. 

remission is less than 150 on the crohn's disease activity index

Thanks all

Will keep naltrexone on the list for my GI appintment in about 3 weeks. He wants to start me on imuran, but I need to discuss with him about all the options. This forum is helping me to pose some questions to him about different meds.

Prednisone is working ok I guess, put it this way, havent got any worse but not a great deal better either. Only new to all of this so I am yet to be able to tell what works and what doesnt.

Thanks again
charlee

I think it depends on whether you have had surgery or not. I am missing a significant amount of bowel. When I was in remission, my stool was never "normal" I didn't go as much as I did when I was sick but because I was missing so much bowel, I don't think my body had the ability to digest food the normal way because of that (does that make sense?LOL) I wasn't in pain like I was when I was sick and for the first time in my life I could eat ANYTHING...but I don't want to give you false hope...I think it's really individualized and everyone is different. The one thing that I wish someone had told me is that Crohns patients are more susceptible to flares if they take NSAIDS and as a result they should be avoided during remission if possible because they tend to trigger the disease.

When I was in remission, I had some joint pain was put on a NSAID and after only 3 doses it triggered my disease and I have been sick ever since...that was 8 yrs ago.

In a remission, you are symptomless usually. There still may be signs of your illness internally. Usually, I feel pretty darn good, but every now & then something happens.. usually arthritis attacks. Somewhere there is inflamation I guess.

Matthew

Thanks for all the posts,

Seems to be relatively individualised. I would be happy if I could wake up and just feel like I could get on with things. Severely battling the mindset of a chronic illness and what the future holds as well. Once I get over that hurdle with more acceptance and less panic, I guess I will be able to tackle the disease itself better. Thanks again all

Charlee

How long have you had crohn’s for Charlee? I know it took me a good few years before I came to terms with it. My Crohn’s is very aggressive and it was almost like a rebellion – I’m not very good at looking after myself even though I know I have more reason to than most people

Oh....you guys...even going to the troulbe to look at the dictionary..feeling the love now!

Its so nice to come on and see what people are writing when you post something, even if you think its a rediculous question because its something I thought as I was writing it, geeze, what a stupid question to put to everyone. But its nice to hear that relief periods do exist. Pheobe, only been dx with crohns for approx 3 weeks, so in the infancy of the disease, however the GI said he suspects I had it probable for about 10. I know my health declined rapidly (and what seemed to be all of a sudden) in Jan 09. On and off work, lethargic, loss of apetite and about 20kgs weight loss. Crashed again badly in Nov 09, picked up slightl and down like a bucket in Feb 2010. Unable to work since then. Started pred in April with dx and waiting for the next instalment of meds from the GI in approx 2 weeks. Still feel awful, and thoughts of doom and gloom setting in rapidly. Family only new to this. Told my mother today I felt really bloated and very uncomfortable and she said "well thats unusual". Could hardly believe it - she came to the 1st GI visit with me and I have given her websites and booklets about the disease but I dont think she really gets how critical it can be. Dont get me wrong - shes adorable and very supportive, but leads a busy life herself and I dont think she fully understands yet. God, neither do I , but I guess when you feel like this - how can you not. thanks for all your posts. You all deserve the best in life for what you have been and are going thru every day.

Charlee