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In despair with colitis- should I do Remicade?

post #1 of 13
Thread Starter 
I'm just so miserable and terrified right now. After a horrible flare (2 mo. post partum) in which I was hospitalized I had 4 mo of remission. Then I went on a trip to visit family, ate something I shouldn't have and now my symptoms are starting to build again.

I was nearly suicidal during my last flare. The idea of having to go through that horrible pain again so soon, plus the feeling that I am not a great mom to my kids when I'm incapacitated is just leaving me in despair. My kids are just 3 yrs old and 8 mo. old.

My plan with my doc was to try Remicade if the colitis came back but I am TERRIFIED!!!!!!! Even if it does bring about remission, at what cost? What if I get cancer and I don't make it? I am just crying and crying because all my options are bad ones. If I don't get Remicade and have a flare then I risk being hospitalized again and maybe major surgery. If I do get Remicade, or another immunosuppresant then I risk cancer!

And I was hoping to TTC next summer !

Can anyone out there give me any hope or advice or insight? What do I do if all my options are bad ones?
post #2 of 13
Just wanted to let you know that I don't know too much about the remicade treatment, but my mother takes the treatment and they work wonders for her. She has had several surgeries and constant flareups, never going more than 6 months without being very ill. Since she started the treatments 3 years ago she hasn't had any problems. You will be in my thoughts as you have a big decision to make. Hopefully someone here will have a better understanding and can offer some help.
post #3 of 13
Hey Mama,

I'm sorry you are going through this. I really don't know anything about that medication, but if you are sure you have tried all the other more natural treatments and the flares are terrible, maybe the medication is necessary for you. If the pain causes you to feel suicidal, something needs to be done! If you do have to go ahead with the meds, you could go to a naturopath or work on your own to support your system so that the risk of cancer is lowered.

Have you see this forum?

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

The people there may be able to help you.

all of the best to you
post #4 of 13
Also, maybe check out this woman's elemental diet for treating IBD -

http://www.jinipatelthompson.com/articles_by_jini.php
post #5 of 13
I take Remicade of UC. I know your feelings of desperation and during my 10 year on and off (mostly on) flare I didn't even have kids. I would take maga doses of prednisone to put it in remission and then it would flare when I tapered.
I started Remicade 6 or so years ago and worked okay, not great. What got me into remission was getting pregnant and that made the remicade work better and I've had 2 small flares which went away after a remicade infusion. I did remicade while pregnant and breastfeeding.

Yeah, their are natural remedies to try. They would help for a few days and then i was back to living in the bathroom. Probiotics did help the most. There's the scd that people swear by but when you are sick you have no energy for the prep involved. Now that I am in remission I do a modified SCD and have more energy and feel better.

Before remission I got 2 blood transfusions and would need to get iron infusions becasue of the constant bleeding. It was baaaaaad! At the time I was so desperate that I didn't care about the longterm side effects of remicade. My options were Remicade or surgury to take out my colon.

I do worry about the long term effects of remicade, but am glad I have found something besides prednisone to work. PM me if you ever want to know more.
post #6 of 13
Thread Starter 
I've been on the SCD for 4 years, and I thought it helped me a lot. After a post partum flare after delivering my daughter in 2006, I was in remission until my next post partum flare after delivering my son in 2009. But now I'm wondering how much breastfeeding my daughter for into my next pregnancy suppressed the UC. My recent and horrific flare ended my ability to breastfeed my son, so maybe that's why my symptoms are worse. Or maybe my colon is just struggling to heal after such a bad flare.


I just don't know what to do. I started crying last night at the movie theater beacuse I was dreading the Remicade and/or another flare so much! I think it's getting a little better and then I start cramping again. I'm basically avoiding food, and I'm nervous all the time. Is Remicade that good? Does it really give you your quality of life back? Is it worth it?

Also, if you took Remicade or another immuno drug during your pregnancy, was it scary? We were hoping to TTC again this summer!
post #7 of 13
I would focus on food folate and whole food probiotics. Both will help with inflammatory bowel issues.

Btw, question for my personal curiosity, do you have/had any mercury fillings in your teeth?


Pat
post #8 of 13
I also have UC. I take Asacol and 6mp, and pred when I flare badly. We've never gone as far as considering Remicade, because I respond nicely to the immunosuppressants when I actually take them. But I totally understand the fear-- every single day that I pop that little white pill, my imagination goes wild imagining all the possibilities-- lymphoma, for instance, or a life-threatening infection I can't fight off. I also had to stop breastfeeding way too early because of uncontrollable flares, and that just about broke my heart. It sucks, because it's never going away, and there ARE no good options-- all of the medical treatments have serious potential consequences, and not treating it can be life-threatening. So I felt like I was stuck. I didn't like any of my choices, but I had to choose.

Frankly, I would go with the 6mp before Remicade, if you respond to immunosuppressants, just because what I was told is that Remicade ceases to be as effective after a period of time, and with a long life ahead of you, you want to keep that option open for when you maybe need it even more. But that was just my own personal decision-- you have to decide for yourself, right? And it's so hard to know what to do.

FWIW, your risk for developing colon cancer is reduced considerably if your UC is kept steadily under control over time. It's the chronic inflammation, even low-level, that leads to that increased risk. That's why people taking mesalamine preparations have lower rates of colon cancer than other UC patients.

Things that have helped me, when I'm walking on the borderline between a flare and a calm period (thus helping me maybe prevent a full-blown flare):

reverting to the SCD starter diet
acupuncture
extremely strong medical-grade probiotics. These are not the sort you can buy in a health food store; they're many times more potent. They also happen to be very expensive, which is so frustrating to me.

http://www.vsl3.com/

Also, a balanced fatty-acid profile, meaning for most Americans more Omega-3s can be really helpful for inflammation of any kind. I found that the Coromega supplements were really easy on my gut, even though they're not strictly SCD-legal, and they're easier than capsules when you feel cruddy.

I will be thinking of you. Best of luck!
post #9 of 13
Yeah, it was scary being on Remicade and being pregnant. But my son was born healthy and haven't had a problem. I had several people tell me that it was better for the baby for mama to be healthy and on remicade than to be flairing. But please keep in mind that I'm not up to date on the latest research. I was pregnant 3 years ago.

I didn't respond to other medication. Asacol would only work if my flair was small and I did better with the rowasa enemas. I did 6mp and imuran and didn't respond to either of those. VSL #3 is my choice for probiotics but yes it is expensive. i also like florastor.

Pat, I do have mercury fillings, but I blame my UC on heavy antibiotic use during childhood.
post #10 of 13
I've developed a theory of my own about UC. We know that breastfeeding is protective against inflammatory bowel conditions. So to me it stands to reason that lousy infant-feeding practices may be partially to blame. I myself was fed soy formula from five minutes after birth, started on processed white rice cereal at two weeks old, and was being force-fed meat and vegetables by six weeks old. If that's not going to ruin a gut, I don't know what will. I was also a heavy consumer of sugar and corn syrup through most of my life, until I wised up and changed my ways.

FWIW, I do not have mercury fillings in my teeth.
post #11 of 13
Thread Starter 
I was exclusively breasfed and I have colitis. My sister was FF from 5 weeks on and doesn't. I just hope that my own kids don't get it. My daughter nursed for 2 years, and my son for 2 mo.

I really believe that overuse of antibiotics in my case, coupled by exposure to some black mold probably caused my colitis. I guess I'll never know what brought it on. I've actually heard, and this might not be true, that if you do allergy shots you can improve your colitis. Anybody heard if this is true?

I talked to my GI today and he thinks I should try the 6mps first. I'm about to start cortisone enemas. I'm also taking Chinese herbs, VSL # 3 and doing the SCD. Hopefully something will work!
post #12 of 13
Quote:
Originally Posted by mergirl View Post
I was exclusively breasfed and I have colitis. My sister was FF from 5 weeks on and doesn't. I just hope that my own kids don't get it. My daughter nursed for 2 years, and my son for 2 mo.

I really believe that overuse of antibiotics in my case, coupled by exposure to some black mold probably caused my colitis. I guess I'll never know what brought it on. I've actually heard, and this might not be true, that if you do allergy shots you can improve your colitis. Anybody heard if this is true?I talked to my GI today and he thinks I should try the 6mps first. I'm about to start cortisone enemas. I'm also taking Chinese herbs, VSL # 3 and doing the SCD. Hopefully something will work!
Yes, I have heard this. My daughter has eosinophilic colitis. Make SURE they have biopsied you for this. It is 100 percent possible to prevent flares if you get a diagnosis, you'd be on a VERY strict diet, and would also have to work with an allergist, along with GI. It's nasty stuff, but treatable. Try the steroid enema, if it helps, I would strongly suspect you have an eosinophilic disorder. Hugs and hope you feel better!
post #13 of 13
Mercury issues can be passed from mother to child, depending upon when mom's amalgam fillings were placed or removed, and whether mom's detox pathways are open or blocked. Nutrient deficiencies create blocked detox pathways. (And 50% of the population has a genetic predisposition to blocked methylation detox pathway with the MTHFR gene polymorphism.)

Most Americans have nutrient deficiencies, even and especially in the presence of multivitamin supplementation. (inflammatory bowel issues could originate from your mom's heavy metal toxicity loads, nutrient deficiencies, blocked detox pathways and microbial imbalances, along with antibiotic or steroid use.)

One can learn more about identifying their own detox pathways at Detox Puzzle: http://www.detoxpuzzle.com/

And Eating Cultures: http://www.eatingcultures.com/tikiwi...tiki-index.php

Both sites discuss the biochemistry of opening detox pathways safely with nutrients.

There are probiotics specific to infants and children. Bifidum is the dominant microbial in the newborn gut. As our diet includes many artificial preservatives the microbial balance of the gut is damaged. Sugars also feed some microbials such that they overgrow the beneficial microbials, and dysbiosis or an imbalance can develop. Candida albicans is the most commonly opportunistic one. Additionally, our SAD does not include the traditionally fermented foods which help to repopulate, recolonize and rebalance the gut microbials.

Breast milk is the only food which supplies bifidum (except for some raw honey). Formula doesn't. So, an imbalance could be started at birth. Moms who have C-sections are given antibiotics, which impacts the newborn probiotic supply, as mom's microbials are damaged by the antibiotics. Bifidum must be provided consistently in infancy for the beneficial
microbials to proliferate in the infant gut.

Mom's own food intolerances affect the infant who receives breastmilk, and baby's gut microbials can be imbalanced due to mom's nutrient deficiencies. (A baby with colic or reflux is a signal of mom's food intolerances.) A prenatal vitamin provides little benefit, as they are generally synthetic chemicals which do not mimic the biochemistry of whole foods.

I keep coming back to your detoxification and nutrients, including gut microbials. Not as a 'blame' type issue, but to identify origin and ways to address the underlying cause.

Do you have any heavy metal issues? Aluminum (cooking equipment, antiperspirant, vaccines), Arsenic (treated wood, water supply), Antimony (fire-retardants on furniture, bedding, night clothes), Lead (water, soil, old house paint), Mercury (vaccinations, amalgam fillings, seafood), are the main metals people seem to have detoxification issues with.

Baby gets a huge dose of heavy metals from mom, in utero and from nursing. Btdt both from my mom, and to my son from me.

Then there are nutrient deficiency issues which could create an imbalance of the microbials in mom's gut/vaginal canal. (plus antibiotics in meats, preservatives in packaged foods, antibiotics, improper ph, poor stomach acid, etc, etc.)

Generally, the microbial imbalance is caused due to insufficient 'good bacteria' unable to keep the candida from overgrowing and inflaming the gut. The more toxins that the body has to rid itself, and the fewer nutrients, the more imbalanced the system becomes.

Often people try to attack or rebalance the gut microbials without addressing the underlying nutrient deficiencies to excrete toxins effectively.

Attacking candida (or other "pathological microbials") doesn't correct the nutrient imbalance, nor open the blocked detox pathways, nor address toxin loads (current or past exposures). The analogy of a garden has been used. If we kill off the weeds, but still have weed seeds and lack of nutrients, the weeds will grow back. Just tossing in some 'good seed' afterward doesn't mean it will proliferate.

Some microbials require continuous repopulating of the colon, as they are transient or require a special gut environment (ph) to survive and thrive. Some microbials can recolonize the gut. Some can actually displace and replace candida albicans.

My focus is on addressing the underlying cause of the inflammatory bowel issue, by increasing bio-availability of whole food nutrients in their actual food form. Improving stomach acid to enhance nutrient absorption, thus improving nutrients - which are necessary to effectively open detox pathways. The main detoxification pathways are methylation and sulfation.
http://tuberose.com/Liver_Detoxification.html

Then toxins can be effectively excreted. Candida often exists as a means of protecting us from the excess heavy metal toxins. Heavy metals are stored in our organs, brain and gut. Candida binds with the mercury to keep it out of circulation. When we kill off the candida, we release the mercury into blood circulation to resettle in our organs, brain and gut, unless we have nutrients available to help excrete the mercury safely. Vit C, selenium and clays help to neutralize the mercury. Sulfates, magnesium and other nutrients (B6, B12, molybdenum) are necessary to help excrete the toxins effectively. But, when we flood the body with die-off of bacteria or candida, the body must deal with a HUGE load of MORE toxins at once. So, opening the detox pathways first, is suggested.

Skin is a detox pathway. That is why many people with excess toxins and blocked detox pathways have eczema and inflamed guts. Nutrients must be absorbed to be bio-available. Synthetic vitamins are poorly absorbed. Adequate stomach acid is necessary to digest food to make the nutrients bio-available.

Water kefir is dairy-free. It has 37+ beneficial microbials and helps bifidum to repopulate the gut. Many more strains than in ANY bottled probiotics. It is suggested to rotate probiotics as there are few strains of microbials in bottled probiotics. (the gut has 400-600 different microbials.) Unfortunately, most bottled probiotics do not survive stomach acid to reach the lower colon. Also, most do not survive transportation from manufacturer to the grocery shelf. Fermented foods are at the proper ph for surviving the gut, and have millions more microbials per cubic fluid unit (cfu) than bottled probiotics.

The sugar used to feed the kefir microbials is consumed during the fermentation process. Water kefir tastes like lemonade. One tablespoon has more microbials than a whole bottle of expensive probiotics.

Probiotics 101: http://www.mothering.com/discussions...s#post13920258


HTH, Pat
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