IV Remicade vs J Pouch vs Herbology Help?

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So Confused
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/25/2009 5:42 PM (GMT -6)   
Hi
 
I have had Colitis since 1993.  I'm 44 and have dealt with my colotis accordingly but however the time has come and now my body is steroid dependent. 
 
Long story short I have been given the alternative of J-Pouch operation or IV Infusion Remicade.  Research shows that both have their lovely side and adverse effects which is why I decided to look for an alternative?
 
I recently met with a Herbologist and they advised me that with proper herbs I could be colotis free.  yeah!! or hopeful thinking.
 
Well the doctors are against it while the Naturalpaths and Herbologists of the world are against continued medicine and surgery.
 
My gasto doesn't know which route I should choose yet my general doctor says go for Remicade.
 
Has anyone had experience with any of these.  I could spend days online research everything but would like to speak to someone with colitis.
 
Hope someone out there can help. confused
 

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/25/2009 6:08 PM (GMT -6)   
What do you want to do? If you can deal with your current symptoms, sure give the herbs a try. I'm a total non-believer in things like that, but if you're game, go for it. Or if you're absolutely miserable, try to buy some time with Remicade- it generally works wonders for everyone, at least for a year or so. Lots of people lose therapeutic value with it, but it's worth a try also. Or if you don't feel like dealijg with either, go staright to j-pouch. It's really all about how much you can deal with your current status- how much you're willing to try, how long, etc. I know of lots of people on this forum who have had either Remicade, a j-pouch, or both of those- most of them are pleased with their decisions. I don't know of anyone who's found relief thru herbs.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


So Confused
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/25/2009 6:23 PM (GMT -6)   

Hi

Thanks for your response. After 16 years I've never really had to think about my colitis to this extent. I just did the meds when I got the flare ups but the last 3 years have been the worst and the only meds that are working are of course prednisone which the doctor wants me off of aka.. osteoperosis etc.  My bone density test came back great.. which amazed her..

Thanks on the herbs info too.  I'm not 100% herb believer either.. I have a friend who suggested it as she's an organic "junkie" and currently taking herbology courses so she's all over that so I had to at least investigate it. 

What do you mean Remicade works for a year.. what happens after that?  And can you expand on loosing therapeutic value?  And have you heard of anyone having really bad side effects?  I know they have to give you the list of what could happen with all meds...but it still freaks you out.

I have until April 7 to make a decision.  Lots of fun.

Looks like you've had your selection of meds too.  I started with Asacol back in 93 and then straight to prednisone and they tried weaning me off with Imuran and Salofalk.. no go

Thanks again for responding.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/25/2009 6:38 PM (GMT -6)   
Welcome to HealingWell, So Confused.

I'm also not a believer in alternative medicine, but there are many here who do feel it helps them. If you're willing to tolerate the symptoms, it probably won't do any permanent damage to give them a try.

I've been on Remicade for three years and in remission for three years. I've had no problems with it, and no sign of it becoming any less effective. As with all the other drugs we take (I've taken just about all of them) it works better for some than others. In the three years, I've seen one person have an adverse reaction, consisting of shortness of breath and flushing. They stopped the infusion and gave her IV steroids for a short time and she was fine.

I was also steroid dependent and have had really grim side effects. Don't bank to strongly on the bone density; four months after my normal bone density exam, I had a pathological fracture of my left lower leg due to osteoporosis, and a year later I was diagnosed with avascular necrosis. It's really in your best interest to get off the steroids, whichever way you go.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


So Confused
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/25/2009 7:21 PM (GMT -6)   
Hi Judy
 
Thank you for your reply.  I'm so glad to of found this chat room.  I'm getting the answers I was looking for.  I know ultimately it is my decision buts its good to hear from others.  After all these years I actually never belonged to any chat room or discussed my colitis with others with it.
 
I'm glad you have had great results from the Remicade.. I think my decision is starting to lean towards that.
 
Tolerating symptoms.. that is definitely a way of putting it.  Today was my first day trying the herbs before I started talking to everyone and by noon I had to take some prednisone and I'm better.. and not to mention I was cramping which I've never done before.
 
I think there may be some positive sides to the herbs in terms of calming and your emotional well being (ie chamomille) but to actually cure or put me in remission I tend to be sceptical.  After all when a steroid (which is a very strong medicne) is the only thing that puts me into remission how can I possible think swallowing "dillweed" as an example will help.
 
Thank you again
 
So Confused - not so much anymore

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 3/25/2009 9:15 PM (GMT -6)   

If you want to try the herbs I would say go for it.  Do not have surgery until you feel you have exhausted all the options you want to exhaust.  I went the alternative route too as I was steroid dependent for 2 years.  Nothing worked for me so I had surgery after 6mp failed to work (this was in the days when 6mp was the last drug).  I can't comment on Remicade although I am glad to not have tried and just to be done with the disease and with the meds, and with the disruption to my life.  Life is great post UC.  I have never regretted my decision and have been able to do all the activities I missed out on when I had UC.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


robray
Regular Member


Date Joined Mar 2005
Total Posts : 130
   Posted 3/26/2009 1:05 AM (GMT -6)   
So Confused, We got UC around the same time. I can't provide you with first hand experience on remicade or surgery, but I am ncontemplating the same decision you are. I now have Osteoporosis from steriod use so I can no longer take them. Also, Not to confuse you situation even more, but if you are considering herbal remedies you might want to consider a few other options along those lines.

There is a food diet that is posted on here called the spinach and sunflower seed diet. I have tried a lot of things from acupuncture, naturepaths, SCD, aloe vera juice, juicing vegetables, HPI, vitamin e enemas, etc. The spinach and sunflower seed diet was the only natural remedy that was actually doing something for me. Unfortunately, I got a sinus infection recently and had to take antibiotics combined with probiotics from my naturepath and now I am in a flare. Anyway, I am hoping to pull out of the flare with the spinach and sunflower seed diet and cutting out grains and dairy. It is showing promise, but too soon to tell. If you try it make sure you cook the spinach or eat canned.

The other thing I wanted to mention was LDN (low dose naltrexone). I haven't tried this, but I think it sounds very promising and has far fewer side effects than remicade. I am investigating it right now and hopefully I can give it a shot.

I can really appreciate your situation and when it boils right down to it I will probably try remicade or humira before surgery, but I am still gathering data on the two options. Have you checked out the jpouch.org? There are some good and bad stories on there regarding surgery. I am going to try to get a consult with a surgeon so I can fully understand the surgery option first hand. Oddly, April 7 I have my GI appointment where I am going to ask for the surgeon consult. Again if my flare up gets worse I might be making a choice even sooner.

I wish you all the best and if you feel like sharing I'd really like to know your decision and how you came to it.
UC (Pancolitis) diagnosed in 1992. Medications: Dipentum, Salofalk Enemas, prednisone (Stopped 2008), entocort enemas (Stopped 2008), Cortenema (Stopped), Asacol (Stopped 2003) Other therapies: Spinach & Sunflower Seeds, HPI (2008), SCD (Stopped, but still make yogurt)
Osteoporosis diagnosed in 2008. Medications: None yet, but they want me to take fosamax
GERD diagnosed 2008, but had it forever. Medicaitons: Parriet (Stopped)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 3/26/2009 8:26 AM (GMT -6)   
I just threw out that "year" time frame as an example- for many, the Remicade is a god-send initially, then it's beneficial effects seem to slowly taper off. For those of us that this happens to, a year or so seems to be a fairly accurate time frame, before they either lose the therapeutic effects, switch to something else, or try a higher dose of Remicade at more frequent intervals. By losing effectiveness, I mean that the infusions effects don't last more than 3-4 weeks, or people are still experiencing a decent amount of symptoms (urgency, bleeding, mucous, excess gas) despite the Remicade. But then there are those for which Remicade is a really good long-term med- no side effects, lots of help with symptoms. The only adverse side effects I know of are a propensity to respiratory infections, or the immediate effects like an allergic reaction. Which Judy described. Generally, people seem to tolerate it well. It really boils down to how much you are willing to put up with, at this point.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/26/2009 10:30 AM (GMT -6)   
I've had UC almost as long as you have and have spent all but the first couple of years in remission, for the most part, through diet and lifestyle changes and the use of natural supplements. If you're willing to make the commitment, I'd say it's certainly worth a try before you try Remicade or have an irreversible surgical procedure. I can't speak to working with a herbalist, but there are alternative and complementary medicine physicians with a great track record of treating IBDers and one researcher/author who was herself a Crohn's sufferer that can provide a wealth of knowledge and guidance.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


So Confused
New Member


Date Joined Mar 2009
Total Posts : 4
   Posted 3/26/2009 6:34 PM (GMT -6)   
Thank everyone so much for giving me their points of view.  Really only the last 5 years of my UC has been trying on me and what worked previously for maintenance isn't working now.
 
All I know is my head is spinning but I just might have to make a pros and cons list of everything. 
 
I am meeting again with the Herbologist on Monday and now that I have more information I can ask more detailed questions.
 
I have been told to try talking to a Natural path by friends now which I might do and then weigh it all out.
 
Besides being tired due to the flareups.. my brain I think is done too.
 
Thank you all again
 
Hope everyone has a great weekend.
 
 

vector4
Regular Member


Date Joined Oct 2005
Total Posts : 22
   Posted 3/31/2009 4:16 PM (GMT -6)   
I am about to try Remicade as I've been on steroids and every time I try to get off I flare back up. My doctor wants me off the steroids so it is the next option before I even consider something like surgery. I am 30 years old and completely healthy otherwise so my doctor wants to exhaust all types of medicine first.

I have never tried any herbal remedy, but I have tried different diets. None of them have put me into remission or even allowed me to get off my maintenance medication BUT I will say they did help me as far as pain in my intestines and such. I pretty much just use them if things start to get hurt me bad but since I have switched from Colazal to Lialda those problems went away for good it seems. I think the Colazal was messing me up and the Lialda delivery system is targeting my colon better.
Diagnosed UC Sept. 2004

1000mg Dipentum daily
worked ok but not great

now on Colazal 6.7g daily
time shall tell

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