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Crohn's Disease Forum » Ulcerative Colitis Forum » Can you ever be normal again?


04-09-2015, 10:33 AM   #1
GingerGirl
 
Join Date: Mar 2015
Location: Monterey, California
Can you ever be normal again?

I've been taking meds now for over a month since my diagnosis and I'm better but in no way great. Still having stomach pain and sudden urges to go far too often. The GI doctor isn't encouraged that I'm not doing better but wants me to give it another month before talking about different meds. He's worried about the next step which are are steroids given my age and the possible long-term effects. I'm sad and frustrated. I want my life back. I can't go anywhere or do anything like this. Can you get pain free and back to normal?
04-09-2015, 04:50 PM   #2
Lottie93
 
Join Date: Mar 2013
Location: London, United Kingdom

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Hey,
Sorry to hear things are tough for you at the moment. The question you are asking is one I imagine many of us ask ourselves. I know initially all I craved was to feel "normal" but now I'm not even sure what normal is haha

I would like to think that once you get on the right treatment and is had time to work your symptoms will subside and you will get some normality back. I can't say if you will for sure or how long it will take as every persons disease is different.

For me the turning point was starting infliximab, after I had that I couldn't believe how much better I felt, it was like i got my life back, unfortunately I am hitting a few problems now but I had a really good stint when I felt completely healthy and was able to enjoy life to the max! So it is possible!

My advice would be to take every day as it comes and try to stay optimistic, there will be bad days but there will also be many many great days! And I hope that once your crohns is under control you will be pain free. It seems like you have just been diagnosed and that is sometimes the hardest part as its trail and error to find out what works for you.
Stay strong and feel free to PM me if you want someone to talk to
Xx
04-09-2015, 06:06 PM   #3
edentenley
 
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Sorry you are having a rough time right now...I was in your shoes just a few short months ago. Then I had surgery and I now feel sooo much better (but I must admit, still not 'normal').

Honestly, my big turning point prior to surgery was steroids in combination with Humira. I know steroids suck and their side effects are TERRIBLE (I'm still on prednisone as we speak and I have acne and irritability and weight gain....etc...), but they instantly helped with my Crohn's symptoms. I would push to try new medication if what you're on now is not working. No sense being miserable when there are many options out there that might make you feel normal again!

I don't know your whole story either, but I was resistant to surgery for months (I had a chronic stricture), but once I got the 'badness' removed, I feel the most normal I have in years honestly. I am still on Humira every two weeks and am slowly weaning off the prednisone.

Talk with your doctor. Don't settle for mediocrity. You deserve to feel better!!!
04-11-2015, 04:08 PM   #4
GingerGirl
 
Join Date: Mar 2015
Location: Monterey, California
Thanks so much! Any advice on what the next treatment would be? Is there anything that works better with less adverse risks? I'm on Llialda and Uceris now.
04-11-2015, 04:16 PM   #5
buttER
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Hi GingerGirl
I know it's hard but I think you need to give it a bit longer, especially with the mesalazine preps you need to wait at least 6 weeks for it to start working, and alot longer than that to start feeling better (if it does help you, it helped me quite well but not to the point of normal). I have no experience with Uceris, my feeling is it should be showing some effect by now, perhaps the formulation is not suitable for you.
04-11-2015, 04:23 PM   #6
Crohns08
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Unfortunately almost all of the medications have potential side effects so there is really no way to tell whether or not you will get them or which ones you will get since everyone is different. Lialda is pretty mild, I imagine they'll change one if not both. Prednisone could be next but it'll probably depend on how bad you're flaring. Have you tried any diets to help? Sometimes diet can really help get things under control. For me, Lialda and the SCD (specific carb diet) keeps things under control.
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04-12-2015, 01:16 PM   #7
HangryGinger
 
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Hi! I'm sorry to hear you're feeling so poorly. I definitely understand the sentiment of wanting to feel 'normal' again. I think KoOrange is right tho, you're probably going to need to give it a least a few more weeks on the drugs you're currently taking in order to give them a shot at their full potential for you - and even then...having your body respond properly to them and feeling normal can still be two very different goals.
04-12-2015, 03:31 PM   #8
buttER
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Hi GingerGirl
I've just checked your previous posts that you have UC. In my experience oral mesalazine (I was given Asacol) is not enough to stop inflammation lower towards the sigmoid and rectum. I can imagine although Uceris is prescribed for UC it is also not concentrated once it reaches the end of the intestinal tract.

What really helped me were mesalazine suppositories because they really act locally. Pain and urgency gone within 3 days. The first time I put one in I felt quite nauseous for 24 hours but after that I was fine, except it does feel a bit weird and might make your BMs a bit odd - but worth putting up with imo. I imagine an enema is even more efficient for reaching further up the colon. Then the question is whether mesalazine or steroid suppositories or enemas are the best treatment for you.

I think that's worth bearing in mind. I noticed improvement with oral mesalazine -it needed a few months - but the suppositories were what helped to stop the symptoms. Having said that I now need to persuade the doc to keep giving me the suppositories!

Good luck! It will get better, I promise.
Oh yes, and keep to a low fibre diet because fibre is abrasive to the already inflamed gut.
04-15-2015, 04:01 PM   #9
Cross-stitch gal
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I've been taking meds now for over a month since my diagnosis and I'm better but in no way great. Still having stomach pain and sudden urges to go far too often. The GI doctor isn't encouraged that I'm not doing better but wants me to give it another month before talking about different meds. He's worried about the next step which are are steroids given my age and the possible long-term effects. I'm sad and frustrated. I want my life back. I can't go anywhere or do anything like this. Can you get pain free and back to normal?
I've been there. I've come up with a saying. I didn't get sick in a hurry, so I won't get better in a hurry either. I guess what I'm saying is to We're all here for you.
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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Pentasa 1000mg 2xday, Canasa Suppositories (when needed) 1000mg 1xday

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