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what is remission to you?

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Crohn's Disease
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Posted 3/25/2013 2:27 AM (GMT 0)
I've been wondering lately if Imuran is really putting me remission. Wondering if I should expect more out of a med than just a so so time with it. Seems it's enough to take the edge off but I still have many symptoms. Is it possible to be symptom free? I know there are many different situations but still would like to get a feeling for what people really consider remission. Is remission for you an absence of most symptoms or all symptoms? Do you consider remission being able to work, get dressed for the day, eat most foods, having some energy? What is remission to you?
Posted 3/25/2013 1:46 PM (GMT 0)
flowery,

I have wondered the same thing for a while now. Since having a resection in November of 2008 and being on Humira since that time I have had bathroom issues and some pain on a normal basis. But I have managed to stay out of the hospital. I am completely ok with this. My husband and I have been having a rough week this week. My doctor wants me to have a colonoscopy to go in and see what is going on and see if I need to switch my meds because she wants me to be symptom free. He agrees that I should have it done. I on the other hand feel it is a waste of time and money right now. I am ok with the symptoms that I have. I guess I never expected to by symptom free. I am scared to switch my meds right now. I work and have 4 kids who are all in activities. I know how to function and know what to expect from my body right now. I worry that if I change my meds I won't be able to function like I need too. So I guess I really didn't answer your question. In my mind "remission" has always just been being in a place where I can still go to work and take care of my family. If I have to deal with some symptoms so be it. I know there are others who have it way worse than me and I am just thankful for where I am.
Posted 3/25/2013 1:56 PM (GMT 0)
Great question! I have had IBS all my life, and I don't think my Crohn's meds really help those symptoms. To me, I consider remission to be normal blood work including no anemia, with the absence of severe pain, and normal energy levels. I still get alternating D and C. Realistically, we can't endlessly go in and biopsy for the absence of inflammation, so I think that's my best guess as how to gauge things. I hope that helps
Posted 3/25/2013 2:29 PM (GMT 0)
My son is 15 and was diagnosed with Crohns disease when he was 10 years old....since then he has had only one time where he has been hospitalized...no surgeries thank god!!! But he has been on different meds and one of them is 6mp...which causes alot of joint pains for him. He has an appointment with his doctor this week and my main discussion is to try and get him off of this. He recently was in florida visiting his grandparents and my mom is very into holistic healing. She went to a local health store that she frequents and found out alot about crohns....the lady who owns the store and the man who manages the store were both diagnosed with crohns at an early age....The man was diagnosed at 19 and down to 89 pounds...They have started my son on Extra Virgin Coconut Oil pills...once a day and and Glutamine1000mg 5 pills a day...and would like him to move up to 10 pills a day.....They are no longer on any medicine for crohns and are very healthy. My son saw a difference right away...and to me seems to have more energy than usual...said he does not feel so nausea all the time when he eats. Coconut pills are very good for anyone who has stomach issues....for IB...anyone that suffers from chronic diarrhea.
Posted 3/25/2013 7:20 PM (GMT 0)
I was diagnosed with fistulizing CD after having two large rectal fistulas in august of 2007.  I immediately started following the SCD diet and taking pentassa. By march of 2008 both fistulas were healed and I ahve been in remission ever since.  I have not had one flare or abcess or fistula since 2007 and going on the SCD diet.  I still follow the SCD diet to this day and take pentassa and still am symptom free.
Posted 3/26/2013 6:26 PM (GMT 0)
This is interesting...fongers06, feel for ya because raising kids and balancing this crohns thing is really hard! Not to mention trying a new med and taking the time out to do so. I find at least if I have symptoms I like to know what they are gonna be.
NY-sooner. Happy for you that your combination of diet and pentassa has worked for you! Blessings.
Gumby44, I like you have had IBS my whole life...so hard telling what life would be like without any symptoms.
Fighting for a cure, I have to remember to try the coconut thing...I've heard it's wonderful! Gotta get on that!
I've had two re-sections and multiple abdominal surgeries. I don't always know if I'm suffering pain from scar tissue, Crohns, IBS or whatever? This word remission varies so much. I am on disability due to having multiple health issues. Somehow, when I flare my Diabetes goes to type 1 (how i'm not sure) I have fibro and had back surgery when I was 28. Basically, I have terrible genes! haha
This question I've determined is super individual. What my Gastro thinks is remission...I do not. I had the choice to go off of Imuran last year due to sometime with no flare..(whatever that is?) I jumped at the chance. As soon as Imuran was out of my blood system..BAM! It ugly head reared! Biggest issue was I couldn't move very well at all. All my joints swelled and I ran a fever. Guess it's Reactive Arthritis due to Crohns too. I cried Uncle and went back on Pred for 6 months and back on Imuran. Rheumy thinks I should go on Remi along with it..Gastro doesn't agree. So in the long haul..it's my decision. I feel helpless making these decisions sometimes. I didn't go to school years and years...so hard tellin. I'm not positive but I think my Diabetes has been caused by Imuran and being on Pred for long periods of time. Anyway...the only thing that we crohnies can do is communicate with each other to become more educated. I'm thankful we have HW to do that.
Posted 3/27/2013 2:49 AM (GMT 0)
What is remission? A dream.
I've had this disease 40 years now, since the age of 7 and I really don't know what "normal" is.
I don't know how or who I would have been if I didn't grow up having it. This disease has defined how I am and to a large degree, who I am.

This disease has made me a fighter, someone who refuses to give up. It has made me a mentally and physically stronger person. This thinking, my way of life has been brought on by having Crohn's disease for nearly my entire life.
It may sound crazy to some to say, for who I am now, how I am now, I am thankful. I know in some instances and seeing it first hand, I have exceeded people I know, worked with and friends when it comes to dealing with difficult circumstances. Where those people have given up, the thought of giving up never entered my mind.
I just don't know any other way to be.

The closest I'd have to say I felt "normal," in remission had been after a resection. Where I enjoyed many years without numerous Crohn's symptoms. Never 100% free of them but that had been a time with the least amount of symptoms.
I hope that makes sense to others with Crohn's disease.
Posted 3/27/2013 6:42 PM (GMT 0)
I was in remission for about 3 years on Humira and I was COMPLETELY symptom free. Normal BMs, no gas or bloating, no stomach pain (even when I pushed on my stomach!), and I could eat and drink (even alcohol) ANYTHING. That's how I know that even now on Remicade, I feel "better", but not as good as I should. I will always be striving for that full remission I had a few years ago.
Posted 4/6/2013 12:28 AM (GMT 0)
flowery, I'm so glad you posted this question!

I was diagnosed with CD just about a year ago after a serious hospital stay. Since then, I have yet to stabilize without heavy doses of pred every few months, as my 6MP dose keeps increasing. I'm desparate to find remission though because my husband & I really want to have a child, I'm already in my mid-30s, but the doc won't clear me for pregnancy until I'm in remission. At this point, through talking to others with CD & reading these posts, I'm starting to wonder if remission doesn't actually mean feeling like I did pre-CD. Maybe I need to lower my expectations. Does anyone think remission might include being less than perfect?
Posted 4/6/2013 1:48 AM (GMT 0)
Arya:

For my husband, remission means he is without symptoms. He still gets a little more easily tired than he used to before he was diagnosed with Crohn's disease. But otherwise, he's normal.

I would continue to work with your doctor until you find yourself with good quality of life. I think more than remission or trying to define what remission means, what is important is keeping the disease in-check, and getting to the point where you are happy with your quality of life.

Perhaps it is time for you to discuss trying anti TNF drugs like remicade.

PV
Posted 4/8/2013 2:12 AM (GMT 0)
I was diagnosed with Chron's my senior year of high school at the peak of my very successful basketball season. I was struggling to have enough energy to get dressed in the morning, could rarely make it through a school day without skipping a class to nap in the nurses office, and my diet consisted of toast and fresh fruit and peanut butter crackers. Still playing intense basketball didn't help, but I lost 23 pounds and could hardly function. While I haven't lived with Chron's as long as some contributors, I don't think there is any reason to be negative about remission. Though I truly believe that post Chron's feeling well will never be the same as pre-chron's feeling well, where I am now and where I was four months ago is unbelievable. I don't have the endurance I used too, I absolutely have to watch what I eat, and right before I'm due for my next Remicaide treatment I experience a little bit of stomach pain but I am not complaining. Too all who are struggling to find out "what remission is" I encourage you not to settle with your combination of medicines until you are feeling close to your old self again.

Keep faith :)
Posted 4/8/2013 11:05 PM (GMT 0)
In 13 years of Crohn's disease, I never had remission, although in the early years the symptoms were mild enough that I didn't care. Later on, though, the Crohn's became severe and kicked my arse. After a colectomy and ileostomy six weeks ago, I suppose I am now technically in remission. But it doesn't entirely feel like it. I'm still going several times a day, just into a bag! I eat a wider range of foods now, but am not absolutely freed up from the worries of having a blockage. I have stomach pain at times, although to be fair that is most likely to be post-op pain still. And finally, I do not yet feel entirely well in myself. I have set myself a time limit of a year. If by then I do not feel 100%, I never will in my opinion.

Sorry, not really answered the question! Total remission to me would consist of feeling how I did pre-Crohn's. Even if I end up feeling miles better, I can't see ever going back to that, tbh. But then I've had a rather drastic operation which most folks with Crohn's don't end up having.
Posted 4/10/2013 10:06 PM (GMT 0)
Great thread....I've been wondering that myself. My son was diagnosed with CD 3 years ago at age 14. He has gone through a bunch of meds ending in remicade. They said he was in remission as per his labs and colonoscopy, but WAS he? At 17 he was still 15 pounds lighter than at 14, most foods bothered him,and he felt lousy sometimes after eating. Now, after a resection for a stricture, there isn't much change.

A remission for me would be to be able to eat a varied diet without discomfort.....ie, being able to eat out with friends at a reasonably healthy restaurant. To have the occasional discomfort after eating something bad, but have mostly normal bowel habits. To have sufficient energy to have a moderate school and social life. But mostly, the food issue...even if it is not all the way per crohns.
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