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how others feel once they are in remission?

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Posted 8/30/2010 8:15 AM (GMT 0)
I was wondering how others feel once they are in remission? Do you suffer IBS or is there any discomfort, bloating, pain? Do you have regular bm's? In other words do you feel like you dont have IBD or do you still have some symptoms? Also, how long did it take to feel or live a 'normal' existance again?
The reason Im asking is that since Im on asacol, I no longer have bleeding or mucus. However, I still suffer the same bloating, cramping and pain associated with IBD/IBS. Im assuming it will take a while for the gut to heal enough where I dont have these symptoms. Ive already talked about it with my gi. Im on the SCDiet and thats helping me eliminate all the foods that cause the most trouble, but then again, it also seems that it doesnt matter what I eat, my guts simply dont like digesting food! This has been the most frustrating part of the illness for me. Once in a flare its always been reletively simple to stop the bleeding, usually. I know its not the same for others. I think we all have specific reasons (related to UC) as to why we arent able to live a normal life. In reading the threads here, for some its the bleeding and/or diarreah. For me thats easy to get under control once it starts, Asacol works really well for me. I dont go out often, I dont go far when I do go out. Its not always bc of bloody diarreah. I was out doing our school uniform shopping in town the other day, just a girls day out with my dd's. I ended up with the worst pain Ive been in in a long time while I was out. I know for others it would be a need to rush to the toilet. Now, if I were IN a flare, I dont go out at all!!! My body feels like lead Im so exhausted, and thats just with getting out of bed!! Now that Im 'in remission', so to speak, I still dont want to go out bc I dont know if Im going to be stricken with that pain that causes me to break out into a cold sweat!
Im wondering what life is like for others at the moment. One big thread where we can read about how others UC manifests and what remission is like for all of us. How do you attempt to live a normal life? Do you work? Socialize? Do you have kids? How do you cope with your UC, whats remission like for you?
Thanks guys.
gen
Posted 8/30/2010 11:53 AM (GMT 0)
Hmmm, well in my personal opinion (and it is the opinion of my GI as well), if you are feeling like you can't go out then that would mean you don't have your life back and that means you are not in remission.

My GI told me that no, I may not feel EXACTLY like I did pre-UC but that I should be able to go about my days with minimal worry and discomfort.  And in remission (for me) I am a bit gassier than pre-UC and my stomach makes more noises.  That I can live with.

I do have a BM every morning, sometimes a bit explosive if I've used Rowasa the night before, but other wise fairly normal.  This is usually my only BM of the day, occassionally I might have another in the afternoon depending what I eat and if I'm on my period.

You are right, however, that is does take some time for the colon to heal, I did have TERRIBLE cramping at one time but I also didn't consider myself in remission when I did.

So I'm thinking maybe you need to look into some anti-spasmodics?  I'm sorry you are having these problems, someone else will maybe have a suggestion too!

I hope you feel better soon!

Posted 8/30/2010 2:34 PM (GMT 0)
I get IBS like symptoms from nerves. You should see me before auditions or trying to sing karaoke, it's terrible. I also still get mild urgency but it's more "I need to go in the next 15 minutes, tops" than "I need to go in the next 60 seconds, tops" I think this illness may have permananetly affected the muscles in my rectum/anus.
Posted 8/30/2010 4:30 PM (GMT 0)
I just had my second treatment of Remicade, and now I'm sick. my throat hurts etc. had blood the past two days as well which is weird since I've gone without blood for the most part for about a month. more solid bowels etc. don't know if a cold has triggered this or what. gonna see doc on wednesday. so I'll keep ya posted. I think I've been in "remission" for maybe 7 months tops without a flare. I'm afraid surgery is inevitable for me down the road.
Posted 8/30/2010 6:44 PM (GMT 0)
I'm in remission (knock on wood) right now. I still get urgency sometimes. I also think I have more gas than the average person but not nearly as much as while flaring. I finally got my energy back, didnt think that would ever happen. Even in remission I am very careful of what I eat. SCD is working amazingly for me. It took a few months to feel as good as I do now. I think you are still healing.
Posted 8/30/2010 7:49 PM (GMT 0)
I'd also like to know what "in remission" feels like. I was bad 15 years ago (diagnosed then) but seemed to get better after a few months on Sulfasalazine. Since then I've had many of the same symptoms so I guess I was convincing myself it wasn't really the UC but something else. Finally this year it reached a bad point and I'm back on the meds but not sure what "remission" feels like as I don't really think I was there these past years...

When do you know to start tapering down meds? What is the best scenario/life/symptoms for when you're "in remission"?

Will you always have urgency, frequency but without the bleeding/mucous? Or does life return to normal (as others are)? What is normal anymore? My minimum # of trips to the restroom now are 4x/day so that's decreased from 12, but is that remission?

My dr keeps telling me he thinks I also have IBS, so wants to treat that... has given me amitriptyline and says it will relax the smooth bowel muscles so I don't have the urgency (assuming it's IBS, not UC) but it's not doing much with that... so I guess it's UC still?
Posted 8/30/2010 9:15 PM (GMT 0)
Luv2ride... what you said...

Luv2ride said...

When do you know to start tapering down meds? What is the best scenario/life/symptoms for when you're "in remission"?

Will you always have urgency, frequency but without the bleeding/mucous? Or does life return to normal (as others are)? What is normal anymore? My minimum # of trips to the restroom now are 4x/day so that's decreased from 12, but is that remission?

Those are the very same questions that prompted me to start this thread. I did start tapering down my asacol, as per my dr's suggestions, but immediately I started feeling the familiar lower abdominal wierd sickly sort of pain so I upped it right back up.

Yeah, I think Im still healing. Its early yet for me. I really really really really really...(lets see how many reallys I can put here) hate the discomfort and pain associated with something so basic and human as e.a.t.i.n.g. It makes you really really really really and genuinely want to hate life and living. Im not hinting that Im suicidal, I dont want anyone to read that into what Im saying here. Im just kind of, food wise, getting back to basics. I actually begrudged giving up my beloved chocolate, and tea with milk and two sugars. I actually had the audacity to feel that way. UP YOURS UC!! I said. Food wise, UC has won. Im cool with that at this stage. I relent. Life is more than food, isnt it! It sure is!


So, I had my colonoscopy early july. It showed that the UC I was diagnosed with 5 years ago hadnt progressed much, if at all (the previous gi's I had were useless!). Im on asacol, Im healing. Thanks for taking the time to reply guys. Its all so very helpful.
Posted 8/31/2010 3:53 PM (GMT 0)
The past couple years I was in remission and I was 98% normal, I'd say.  Maybe a bit more gas.  BM's were fairly normal.  Rarely a good old grunter like years past, but mostly solid, mostly predictable, and one a day.  The mental issues of knowing I have UC and it could flare up anytime (like right now) out of no where kept me down and stressed a bit. 

Definitely differs for everyone, but I think if you are still having issues that disrupt day-to-day life, you should tell your doctor.  The goal should be to be nearly symptom free. 

Posted 8/31/2010 4:11 PM (GMT 0)
I'm in remission right now.  I feel like I don't have UC at all.  That's very suprising for me given the fact I had really bad pancolitis for many years with a lot of bleeding, urgency and diarrhea, cramping, etc...  So far the Imuran has worked really well.  I now have 1 bm every 24-48 hours, no bleeding, no urgency.  It's as if everything went away.  I am now doing everything pre-UC.  I was so bad I used to not want to go the public places and I used to bring a change of clothes, etc...  Now I am out and about. 

So my mental attitude is great knowing that, for now, I have this UC thing under wraps.  Loving life for the moment.

MyUC

Posted 8/31/2010 4:24 PM (GMT 0)
SoIGIBD

From your description I agree with calm-oto that you are not in remission, although some of your symptoms have improved. Because there is no "cure" for UC, remission is the word used to describe a return to normal, symptom free life.

I have found in my 9 month return to GI health that healing is slow, very very slow. You have described your gut as disliking digesting food and I feel that is the basic issue. Our gut biology got screwed up to the point that our colons were severely damaged. Even though my colonoscopies weren't horrible my symptoms were horrible, life-alteringly horrible, like you I didn't go out much.

I think we are used to "get fixed quick" through aspirin and other drugs and UC just doesn't get fixed quick. Even reading about people' surgeries it's clear that isn't a quick or easy fix.
Don't give up on SCD too quickly. I tried it once and failed to get results. This time it worked, maybe I paid more attention, maybe it's a miracle or I'm just lucky.

Remission comes in stages. Sometimes you can only tell things are better when you look backwards. But the same can be true of getting worse too.

One day at a time. Best wishes.

P.S. Just realized I didn't answer your basic question: yes I feel better, almost normal. No bloating, no pain, urgency is rare, bleeding is never, I'm 98% symptom free. Constipation is my last hurdle and it is the least of my previous life-altering symptoms. I have become a genius at figuring out how much fiber my gut needs, how much water to drink and what contributes to C. Do I wish I didn't have to be so aware? Yes, like the old days. But compared to what I have been through the last 10 years things are so much better I cannot even think about complaining, especially when so many others suffer so much more.

Post Edited (imagardener2) : 8/31/2010 10:31:15 AM (GMT-6)

Posted 8/31/2010 5:20 PM (GMT 0)
It could be that you have a problem with a certain food or foods, and your diet isn't catching it.
When I eat gluten I get a terrible bloat and am likely to have other bad-gut symptoms.

I'm definitely in remission, but my GI says my I probably have "lead pipe colon" from the scar tissue and loss of musculature from having UC for so long. So I still have loose bowels and occasional urgency, from that.

I can't remember what it was like not to have to be aware. Sigh. My GI says it's now just part of my DNA! I'm so jealous of people who can take their healthy digestive system for granted.
Posted 8/31/2010 6:29 PM (GMT 0)
Thank you so much. I knew it would be a long road to healing. Its something you gotta be committed to, which, finally, now that I understand my illness better, I am.

imagardener said...
I think we are used to "get fixed quick" through aspirin and other drugs and UC just doesn't get fixed quick. Even reading about people' surgeries it's clear that isn't a quick or easy fix.
Don't give up on SCD too quickly.

I am SO not giving up on SCD. Its given me a springboard, if nothing else. I kind of just dont know what to do with myself. For a very long time I had some UC symptoms. I can remember in college when it started. My first symptoms were diarreah and the fact that it felt like I had a massive stone in my stomach after eating. I remember i was working in a bagel shop and I asked one of my coworkers if that was normal. He said 'I dont think it is at all normal to feel like that after eating just a bagel!' I did go to the dr after that and for the diarreah but the told me to try the brat diet. But it went away on its own anyway... Anyway, SCD is giving me a springboard. I AM just so fed up with not being able to do normal everyday things. I went grocery shopping today. Normally Id need a nap after that. But we had company... and I made dinner. My kids cant have friends over bc Im too shattered/tired to see to all that sort of thing...


Enough of my whining. Whats coming in stages is the reality of what I have to go thru to get myself on the road to healing. I have a pretty good outlook about things normally. When Im tired and overdoing it, I get like this and need to vent. Thanks for the support here guys. I so very much appreciate it.
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