I don't understand REMISSIONS

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Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/23/2011 11:12 AM (GMT -6)   
My doctor wanted to put me on immunosuppresive drugs but I said NO! They terrify me. The fact of being on pills for the rest of my life just sounds horrible to me. So when I quickly said no to that recommendation, she said that we would try a different approach: 2 years on rectal enemas. As of now, I'm just taking Budenoside rectal enema and things are looking good. No more bleeding or mucous or pain. I'm getting some weird side effects which I think are due to fact that I just got off prednisone. What I'm not understanding is, does remission mean that there will be a time when I won't need to take any medication what so ever? Cause I'm feeling great right now and I really want to stop taking the rectal enema. Why is she making me take them for another 2 years? 2 years seems like a LONG LONG LONG time! I have chronic ulcerative colitis and I feel like I already know the answer to this question but will it go away? I know I have it for life but will there be a stable time in my life like year and years and years where I won't need medication and I'll just be normal again? Thanks in advance!

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3715
   Posted 6/23/2011 12:43 PM (GMT -6)   
does remission mean that there will be a time when I won't need to take any medication what so ever?

Not according to the medical community unless you have surgery and even then there are people post-surgery who need meds.

The only place you'll ever hear of people who don't take meds after being diagnosed with UC is either in the surgery forum and here from people who have managed to go med-free using diet, supplements or both.

My doctor says there are studies showing that people who take anti-inflammatories mesalamine meds have less colon cancer than those who don't.

I don't want to make you feel bad but life-long meds are part of UC and only a small percentage are med-free without surgery.

I understand about not wanting to use the enema forever. That may not be necessary. You may get the lower inflammation under control with enemas and then be able to take low impact meds like Balsalazide/Colazal which has few side effects (at least for me). Ask your doctor about what he/she sees as your long range plan at your next appointment. But don't stop the enemas in the meantime.

P.S. I also said no to immunosuppresive drugs and used diet modification to get my symptoms under control. It worked for me and no enemas used in a very long time now.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel, mesalamine enema as needed
Spinach & sunflower seeds daily, (1) VSL#3 nightly

Post Edited (imagardener2) : 6/23/2011 1:46:50 PM (GMT-6)


tank89
Regular Member


Date Joined Feb 2011
Total Posts : 213
   Posted 6/23/2011 1:10 PM (GMT -6)   
It's all down to how your disease is. For example some people only get one flare a year or rarely ever! so most can just control it via diet so it's not so much a problem. Then theres others like me for example who constantly flare and rarely in remission so unfortunatly have to rely on these drugs. Im on 125mg of 6-mp + 4g pentasa. Also on prednisone.

Unfortunatly when you realize how bad flare ups can be and how horrible it is, taking tablets all your life is nothing. I'd take 100 tablets a day for the rest of my life it meant a cure for this sh1tty disease but it's not the case.

Alinus
Veteran Member


Date Joined May 2010
Total Posts : 593
   Posted 6/23/2011 2:01 PM (GMT -6)   
budenosoide is not a mesalasine - in europe is called budenofalk. it's a corticoid enema, developed in order to address more to our gut and with lesser side effects.
Rectocolitis .Symptoms since about 2002. Currently in remission (latest C-scope done in feb 2011).
Ankylosing Spondylitis as a gift from rectocolitis. Symptoms since about 2002. Fragile remission from march 2011.
Highly restricted SCD Diet since feb 2010. Raw carrots, Celery, Beet root, peppers, Chicken, Tuna, Turkey, Swiss cheese, Dry red wine.
Mesalasine 1500 mg/day. Centrum Multivit. Vit D.

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/23/2011 3:15 PM (GMT -6)   
Thanks so much for all your replies. I think I'm just very upset with the side effects I'm currently experiencing and since they are a direct result of the medications, I just want to stop taking the medications all together. Imagardener2, I will definitely talk to my doctor about what her long-term plan is for me. Thanks for giving me all that information on remission and I'm so glad you could make some changes through your diet. I am going to try to do the same. Thanks again. Tank89, I'm sorry to hear about your flare-ups. The UC is actually getting better for me at the moment; I think I may be going into remission for the first time. Hopefully, I'll be able to stay this way for a little bit. I'm not too sure how often I may flare-up because I was just recently diagnosed with UC. Thanks for sharing your experience with me. Alinus, thanks for clarifying things. My doctor had told me that the Budenoside would have less side effects than the Prednisone, hence why I'm now only taking that. I hope that's the case because I absolutely hate the side effects of Prednisone. Thanks again!
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

quincy
Elite Member


Date Joined May 2003
Total Posts : 25693
   Posted 6/23/2011 3:20 PM (GMT -6)   
I'm wondering why she dien't put you on any mesalamine enemas rather than the steroid?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 2222
   Posted 6/23/2011 3:29 PM (GMT -6)   
I agree with Quincy. If you are going to take long term meds it may be best to go with meds with the least side effects. 5-ASA meds are probably the safest as long as you find them effective and are not allergic to them. And obviously rectal meds are local and less systemic than oral medications.
Male/59 DX ulcerative colitis Feb08, possible Crohn's colitis DX Mar10.
No Meds, allergic to Mesalamine. Remission since Mar10. Psyllium seed mixed with VSL3 especially helpful. Food journal instead of SCD.

Boswellia, turmeric, fish oil, S. Boulardii, resveratrol, multivitamin, extra D3, K2, C, high gamma E, magnesium, phos choline, glutamine, probiotics. Lots of fruit & vegetables(but no plums or kale), no soda, no HFCS, no trans fat, no shellfish, tea instead of coffee, watch gluten, few processed foods, no carrageenan.
Nature created all of the locks, therefore Nature has all of the keys

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/23/2011 3:38 PM (GMT -6)   
She never even mentioned 5-ASA medications and I don't know what they are really. She immediately put me of Prednisone and I've been taking steroids ever since. I will definitely talk to her about these 5-ASA medications when I see her next time. She did mention that her long-term goal was not to have me steroids because long-term steroid use can have horrible side effects in the future. Thanks quincy and BabeintheWoods for informing me on this. I will being this up during my next appointment! :D
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

Alinus
Veteran Member


Date Joined May 2010
Total Posts : 593
   Posted 6/24/2011 12:41 AM (GMT -6)   
I believe your condition was bad enough so she indented to stop the flare.
budenosoide is a good enema, you will see. probably if you respond well to it next step will be the 5ASA's in order to mantain your remission.

every GI has his own drug protocol probably, based on his "field" experience.
Rectocolitis .Symptoms since about 2002. Currently in remission (latest C-scope done in feb 2011).
Ankylosing Spondylitis as a gift from rectocolitis. Symptoms since about 2002. Fragile remission from march 2011.
Highly restricted SCD Diet since feb 2010. Raw carrots, Celery, Beet root, peppers, Chicken, Tuna, Turkey, Swiss cheese, Dry red wine.
Mesalasine 1500 mg/day. Centrum Multivit. Vit D.

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2671
   Posted 6/24/2011 2:14 AM (GMT -6)   
I think accepting the fact that you may have to be on meds for the rest of your life is difficult for some people. To me, when you find that regiment that manages this thing, you feel good that you're doing your best to take care of your health. Relapsing and having to go back on pred is not worth the rest of the time being without meds.

One relapse cured me of thinking I didn't need to be on meds the rest of my life.
In remission--pancolitis. 8 Asacol, Rowasa/thrice weekly (if inflamed - nightly/Canasa daily, Probiotic -RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules- alternating nights, vitamins. Limit greasy, fried, citrus, dairy (except yogurt), red meat, no alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-zinc magnesium B6 compound (ZMA)- for sleep + Zyprexa (sometimes)

tank89
Regular Member


Date Joined Feb 2011
Total Posts : 213
   Posted 6/24/2011 6:42 AM (GMT -6)   
Just to try help you along don't be negative about the condition as it makes it worse. Don't get me wrong it sucks and you have every reason to be upset but in my experience just try get yourself sorted. It will take a while to figure out what works and what doesn't in terms of diet, certain foods may flare you up a bit.

Best advice I can give you is just live a nice clean life style cut out alcohol and rubbish try eat good foods cut the fiber down and vegetables as imo this makes it worse.

Hopefully your UC is only mild, but only time will tell.

missk
Regular Member


Date Joined Nov 2005
Total Posts : 183
   Posted 6/24/2011 8:07 AM (GMT -6)   
well i was in remission for 2 years! i didnt take any med...and trust me i tried them all and hate them...but im not sure what i did differently. i was a vegitarian..i did it fish though..and i didnt eat salad or cheese..ever....then i got married..so thats the problem...haha! but anyway..it did come and go...and now im trying to control it again..im not eating lettuce..im actually feeling better...i also eat some raw garlic everyday...just a bit...im honestly feeling better. its a relief!
missk
mild/moderate ulcerative colitis
diagnosed 1992
currently on no meds.....
turmeric...this works!
no dairy!

Being happy doesn't mean everything's perfect.It means you've decided to see beyond the imperfections! God didn't promise days without pain, laughter & without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears & light for the way.

DavisD
Regular Member


Date Joined Jan 2011
Total Posts : 60
   Posted 6/24/2011 8:57 AM (GMT -6)   
Well here's my cautionary tale:

http://www.healingwell.com/community/default.aspx?f=38&m=2141871

I think that some people can have long remissions without medications, but I don't seem to be one of them. But the mesalamine meds are really trouble-free for the most part, so it is not a big issue to take them indefinitely. Except that in the USA, they are expensive.

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/24/2011 8:30 PM (GMT -6)   
Thanks for your replies, everyone! I really appreciate it. I just have a very negative mindset towards medications in general since I started experiencing the side effects of prednisone. I just don't want to deal with such side effects my whole life!
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

missk
Regular Member


Date Joined Nov 2005
Total Posts : 183
   Posted 6/25/2011 11:17 AM (GMT -6)   
prednisone is one of the worst but does work for short term...you dont want to be on that to long..the side effect r bad...and i agree with davisd...mesalamine meds is one that did work for me too...if i had to pick one...i guess it trial and error...u will find waht works for u....
missk
mild/moderate ulcerative colitis
diagnosed 1992
currently on no meds.....
turmeric...this works!
no dairy!

Being happy doesn't mean everything's perfect.It means you've decided to see beyond the imperfections! God didn't promise days without pain, laughter & without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears & light for the way.

quincy
Elite Member


Date Joined May 2003
Total Posts : 25693
   Posted 6/25/2011 2:18 PM (GMT -6)   
Gina..you don't have to be on pred...ever, for UC. Do the research and reading on 5ASA medications, oral and rectal.

You have UC...it's a forever disease. If you learn how to control it and learn how to treat flares early with meds that hopefully won't have long-term effects, then that's what you'll have to do.

Even many who are on certain diets, many of them are on meds.

No offense, but welcome to "life" as a non-perfect being. Education through experience, knowledge and proactive steps helps a lot.

As we age, we change...We can't control everything, especially inherited tendencies.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/26/2011 12:33 AM (GMT -6)   
Thanks for your input everyone. I guess I'm still trying to deal with the fact that I have UC. It isn't something I've come to accept yet. I guess I'm lying to myself when I say that it'll go away forever but I honestly feel that way at the moment. I guess I'm in denial. I'll do my research on the 5ASA medications and talk to my doctor from there. Hopefully I can come off of the steroids soon. I don't completely understand UC. Are you taking medication to prevent a potential flare-up in the future? Is that the whole purpose of these 5ASA medications? As of now, I've completely tapered off of prednisone and I'm only taking Budenoside. No flare-ups, no bleeding; everything seems quite normal. I'm only dealing with all these odd side effects from prednisone use. So is the Budenoside a preventative measure? Am I in remission?
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2671
   Posted 6/26/2011 2:40 AM (GMT -6)   
Gina, I remember I was on prednisone and in such despair over my disease. I'd call my family and cry, "I can't believe this is happening to me." Prednisone is horrible and will really turn you off to meds, but it does help get you into remission. It's up to the enemas, the orals and the suppositories (all mesalamine) or a steroid enema (for temporary use) to maintain your remission for as long as possible.

So you should add to your regiment, eventually switch the steroid enema to mesalamine enema. While you ARE doing great, you need to be off prednisone some time and feel normal to consider yourself in remission. I got off prednisone, dropped my maintenance meds to a lower dose and flared a month later and had to go back on pred. This was what my doctor ordered, so he declared me in remission way too soon.
In remission--pancolitis. 8 Asacol, Rowasa/thrice weekly (if inflamed - nightly/Canasa daily, Probiotic -RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules- alternating nights, vitamins. Limit greasy, fried, citrus, dairy (except yogurt), red meat, no alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-zinc magnesium B6 compound (ZMA)- for sleep + Zyprexa (sometimes)

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 3715
   Posted 6/26/2011 7:20 AM (GMT -6)   
So is the Budenoside a preventative measure? Am I in remission?

Since Budenoside is a steroid based med I personally would say you are in a steroid-assisted remission. Your goal should be to get into a non-steroid remission while taking low impact oral meds (meaning no symptoms from meds). That would mean you have steroid enemas to fall back on if things go off track.

Of course if you get healed enough to not take any oral meds and just use a mesalamine enema that would be great too. There are just a few people here like that, no meds at all. That is my personal goal but I'm happy to be in remission using oral meds and no enemas for over a year.
In remission April 2010 after 10 years of UC with no remission ever
Jan 2010 began SpecCarbDiet (modified to remove dairy, fruit & juices,)
Gluten-free=bleeding stopped in 3 days, 95% remission in 5.5 months on SCD
SCDiet: Gluten/grain-free, starch-free, low carb, honey as sweetener
(9)Balsalazide+(6)Citrucel, mesalamine enema as needed
Spinach & sunflower seeds daily, (1) VSL#3 nightly

aquafly79
Regular Member


Date Joined Aug 2007
Total Posts : 317
   Posted 6/26/2011 3:58 PM (GMT -6)   
Gina,

I totally hear your frustration. I was on prednisone the first time when I was pregnant and flaring, and I was a crazy person and I too hate it. Unfortunately, it does help. After my most recent flare, my GI doc put me on Entocort EC, which he said was a steroid for your colon and there were a lot less side effects. I'm curious, do you get the pred side effects with the steroid enema? Never been on one, just the regular enemas among other things, but I was thinking of asking my doc about them. I also am surprised your doc didn't even mention 5-ASA drugs, though I remember right when I was diagnosed, the doc I had then didn't mention them either and just put me on enemas. Enemas freaked the hell out of me, but later I went on prednisone and would be glad to do enemas to avoid that again. Hang in there. I am happy for you that you are feeling better and hopefully you stay that way.
Currently on Apriso and Humira(started 3/11)
Canasa enemas sometimes
Diagnosed with many food intolerances including dairy, oats, lime, squash, etc.
Recovering from a flare in Dec 10/Jan 11
Supplements include: Vitamin D, VSL#3, fish oil, calcium, magnesium, multivitamin,
Just started taking OTC antifungal with caprylic acid, pau d'arco, grapefruit seed extract and tea tree oil

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/26/2011 4:53 PM (GMT -6)   
Thank you so much for replies and kind words, everyone. I really appreciate it. I'm just going through an emotional roller coaster right now and hopefully it'll be back to normal. @journeytohealth - I'll definately keep in mind what you said about your doctor telling you that you went into remission too soon; I just could not deal with another flare-up; my last one was unbearable. Perhaps that's why my doctor still has me on steroids. I'm going to talk to her about her long-term goal for me. @imagarderner2 - I'm just having a hard time grasping the idea that I may have to take medication my whole life. It's a big change. However, if the side effects are minimal and it prevents me from getting flare-ups, then I shouldn't complain! :) It's just that gosh darn Prednisone that has made me HATE medication! @ meredithf, I'm not too sure why I am getting these weird side effects. I don't think the rectal enema is the cause to be honest. I think the tapering of the prednisone caused it. When I was on a high does of prednisone I had minimal side effects but whenever I go below 15 mg, the side effects are very apparent. According to my doctor, the rectal enemas have minimal side effects because they're going directly to the area where they are needed. I was on prednisone for 6 months so I think I'm just dealing with the aftermath of it all.
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 6/26/2011 9:04 PM (GMT -6)   
Gina-I don't have a lot of time tonight (my husband has been out of town since Thursday and both my kids have been sick with a stomach bug and I am 7 months pregnant-needless to say, I am heading to bed soon), but I wanted to tell you that I understand.

When I was first diagnosed, I had a crappy GI who didn't know that much about the disease and did not explain it well to me. I had never had any health problems before this diagnosis. Heck, I never took anything more potent than advil or tylenol aside from having meds for c-sections! So the idea of having to be on meds forever was something I just had not considered feasible for *my* life. And thus, once I got into my first remission, I stopped taking the meds. And I didn't know that was a bad idea. But oh how it was. Taking a few pills a day is NOTHING compared to what I have been through since-and had I stayed on the maintenance drugs and gotten the info I needed about the disease, my UC may not have progressed to the point it has. So please do find out what meds you can effectively use for maintenance and stay on them unless and until you have some experience under your belt with this disease, and can figure out if there are any diet/supplement tricks that work for you. (and they do not work for everyone-you will find that the only thing we really have in common in terms of our health around here is that we all have a disease by the same name. But my UC and your UC are quite different in terms of what our triggers are, how bad our flares are, and what treatments work, etc)

Another thing I never thought I would ever do before this disease, and even immediately after, was regularly use rectal meds. But let me tell you, they can be a Godsend. They don't all work the same for all people-for example, steroid rectals make things worse for me, canasa works well and rowasa-5ASA enema-does not work for me. So again, you have to play around with what works and what doesn't for you-but they are worth using.

You will have to find a new normal. I have. I have had times in my life in these recent years when I felt badly for myself, and there is no doubt that I would love to not have this disease, but there are some things about my life that have really improved since I accepted that this is my new lot. I used to be a very very stressed out person. But stress is a big trigger for me, and I can't have it in my life like that anymore, so I have been forced into finding ways of keeping it away and handling it differently when it is unavoidable. Antibiotics are another trigger for me, so I have found preventative measures for staying healthy, and I am definitely in good health aside from the UC! Also, I am so much more vocal now about my health. I am my own advocate, whereas before I just blindly followed whatever the docs told me. I have found acupunture and some other alternative therapies that have had a huge impact in my overall quality of life. I am not happy I have UC, but my life on the whole is much happier now than it ever has been before because of the changes I have had to make because of the UC. But that doesn't mean it is easy to accept. You have a chronic illness now, and it will take time to process it all, come to terms with what that means in your life and find peace with it.

My biggest advice would be to not make any drastic changes with your meds and such before you do more research and find out more about the disease and various treatments of it. And this forum is an excellent place for information!!!
Laura
Remission!
35 years old, stay at home mom of 2 girls, ages 5 and 4
Currently expecting #3! Due 8/31/2011
Diagnosed in March 2007, symptoms started Dec. 2006
Currently on:
REMICADE (started 2/26/10), otherwise taking Asacol (6/day), slow-fe iron, milk thistle, multivitamin, calcium, Ultimate Flora Critical Care, Vit. C, Vit. D3, Omega 3, PepZin, MegaZyme & Folic Acid

Baggravation
Regular Member


Date Joined Jun 2011
Total Posts : 354
   Posted 6/27/2011 9:08 PM (GMT -6)   
Thank you so much, Laura. I'm so glad that you shared your experience with me. I won't make any drastic changes in my medication. I went off medication for a little bit and I had a flare-up and I wouldn't want that to happen again. I guess I feel like I keep pumping medication and steroids into my body; won't that have a really negative impact on my health in the future? Just like you, I never took anything but the occasional Advil and I wouldn't even take that at times. I would always try to tough it out and just deal with it. My thinking has always been if you use a drug long enough it becomes ineffective. I'm going to be a little more proactive and do some research because my GI just keeps loading me up on prednisone and my family doctor has told me that he doesn't think it's a good idea for me to be taking steroids for such a long time. So hopefully I can find something that's not a steroid. I guess I'm lucky that my UC is under control with just rectal meds right now. I'm not having to take several different things as of now. Thanks for sharing your advice! I really appreciate it! :D
Hello. My name is Gina :)

Condition: Ulcerative Colitis
Symptoms Started: Mid-October 2010
Diagnosed: January 2011
Past Drugs: Prednisone, Pantoloc, Ectocort Rectal Enema
Current Drugs: Budesonide Rectal Enema (5 mg daily)

seasons21
Veteran Member


Date Joined Aug 2004
Total Posts : 632
   Posted 3/12/2012 12:35 AM (GMT -6)   
I know this is an old thread but I was searching and came up with this. So you are on Remicaide while you were expecting a baby? I didn' think you could do that? I'm a Mom of 2 who wants a 3rd. Cannot seem to hit remission after years of mostly quiet UC. Considiering 6mp but very scared of the next line of drugs. Allergic to mesalamine.

tournevice
Veteran Member


Date Joined Mar 2008
Total Posts : 713
   Posted 3/12/2012 9:46 AM (GMT -6)   
Gina! Being on pred and dealing with the side effects of it must be a proper turn off for meds. I never tried them and my doctors (had 3 over 12 years) never suggested them.

Every UC is different and every approach as well. Having UC will challenge you along the way, even in your beliefs. And this is probably a challenge for you. Taking pills is one thing but to be dependant on it its another. Its telling you that actually the uc is never far. Thats how I felt. I felt while taking meds that i had uc and i had a big denial period.

However those pills or enemas can give you very little side effects (if none) and makes you feel sometimes that you dont have uc. And that is suchhhhhhhh a wonderful feeling. You feel so amazing because you felt so crap before!

You can make some diet changes as well. It always help how you feel in general!
But its all your choice but usually when you feel crap on a particular med it might means its not the right med for you. Some poeple had great success with diet here (not on my side) but in your uc life journey it will be difficult for you to put completly aside meds. Accepting uc is the most difficult thing ever :P

Bare in mind as well that you might not have to take as much when you are better. I started with enemas every night and now im on about 3 a week. I am on 6 asacol pills daily and to feel im not always on meds, i get rid of 3 in the morning and take the other 3 before bed. And my enemas is at bed time. So during my daytime, my social time I don't have to rely on meds or to feel i have to hide to take them :P

good luck
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