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I am not going to be a victim

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Ulcerative Colitis
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Posted 10/1/2011 5:00 AM (GMT 0)
For years i've experienced minor stomach issues, nothing too much of concern and most of the feedback was how terrible I ate. Once you reach the age of 13 you start treating yourself to whatever you want no matter how many fresh fruits or veggies your mom puts on the table. I remained slim and still am, very healthy looking, i could provide a picture! But now that i'm 21 and a senior in college, i've worn out a few years with drinking and experimenting and possibly left my body in a little shock. I have however always been active and since early teens tried to eat healthy, maybe stress and anxiety is a huge factor, maybe genetics too.

In the middle of july when i became stressed out after a break up I noticed blood on tissue, just months after having more bowel movements during the day. I went to the nurse, she checked me for hemorrhoids and prescribed a cream. After no results i was referred to a GI doctor who checked me again and told me i should think about a colonoscopy. I refused on that part and decided to seek out an acupuncturist in august. She gave me natural herb pills for digestion and what not, nothing was helping and i was going more frequently and seeing more blood at this point. Come september i finally decided to schedule a colonoscopy with the GI doctor.

Going in i was very nervous, and was put under anesthesia with no option to stay awake. Well when i woke up terrified i was disoriented and confused and so convinced i had colon cancer. When my sister finally calmed me down a bit and told me i had severe colitis. She also felt for me because for whatever ridiculous reason they gave me an insane amount of anesthesia which made me gave horrible suicidal thoughts and put me in shock for a day. I was so confused and angry and upset that i had something like this, something my cousin and aunt and uncle all suffered from for a few years. When i went back in a few days later for a follow up with my doctor, arrogant as ever he told me i would live with this for the rest of my life and probably be taking pills forever. Horrible words out of a medical doctor no less. When i got home and balled my eyes out i decided i wasnt going to be a victim from this, that i was going to recover. Maybe i will have this for a long time, but there is no way i could live my life like this every day. The thought of waking up every morning with unbearable stomach pains and urges to go to the bathroom all while losing blood, and probably losing weight, how could i ever grow as a person with something like this? How could have someone love me, and sleep next to me at night without being embarrassed?

Almost a month has passed and i'm just starting the necessary steroids used to treat this as well as 10 day cycle of two antibiotics, but i refuse to take any other side effect altering drugs. I took bentyl(?) the other day as it was also prescribed and it was insanely strong on my body, made me feel 'high' and dizzy, with blurry vision and rapid heartrate. Something like that isnt worth it and obviously the human body is fighting it.

In just a few short weeks i'll be visiting home in Vermont to see a real naturopathic doctor who has worked with my mom for years on her health issues (like acid reflux and ulcer).

So this is for all of you who suffer from this horrible disease, i know your pain and we cant feel sorry for ourselves, or subject ourselves to a lifetime supply of synthetics that could make us worse. If and when i do see changes and results and experience recovery i am devoted to helping others with this as it brings me to tears a 21 year old guy in college, who's suffering just as badly from 'severe ulcerative colitis', i want to help you as i help myself, naturally ofcourse. I know I dont have to live my life this way, and neither do you.
Posted 10/1/2011 5:09 AM (GMT 0)
as much as i admire your resolve not to be victimized by this disease, it's not as clean cut as you seem to articulate. I'm a 21 year old college student. I was diagnosed in the 6th grade. I've gone through hell, like most people on here. I'm fighting back, have been in two relationships, and my life has had its ups and downs. some days are embarrassing; you don't make it to the bathroom in time, or you pass gas and everyone notices, or you're doubled over in pain at work, or you're dry heaving in public... other days are good; no pain, no nausea, just a normal life. the people on these boards have helped me immensely since i left for college four years ago. there are some natural treatments, but if it's severe, you really should consider some of the controlling medications. i'd try the natural for awhile, but if i didn't see any results, i'd make sure to pursue other methods of control. your life can be good, but you need to take care of yourself. know that you CAN grow as a person with this. you are not defined by UC... you're a person who happens to have UC. we're all here for you.
Posted 10/1/2011 5:29 AM (GMT 0)
I understand and i appreciate your feedback, I know we'll find a way to help resolve this!
Posted 10/1/2011 5:40 AM (GMT 0)
Glad you have decided to take your health into your own hands. Hopefully, this forum will help you on your quest. Quite a lot of people here have and/or are using alternative treatments to control their condition. Some have had great success with alternative treatments; others not so great. I, myself, did fecal transplantation to get myself into remission. However, fecal transplantation seems to work best for people who have C-diff or UC due to an imbalance of fecal flora (which is generally the result of antibiotic use or abuse). You stated that the reason for your UC is due to genetics with your trigger being stress.

Some additional things you can try:

Meditation
Yoga
Self-hypnosis to reduce stress
Acupuncture
Chinese herbal remedies
Massages to the abdomen if you aren't flaring
Eating spinach and sunflower seed butter
Keeping a food journal and eliminating any foods/beverages that you find difficult to digest
Turmeric and other anti-inflammatory supplements
Foods that promote relaxation such as calming teas
avoid caffeine, spicy foods, ...
Posted 10/1/2011 7:41 AM (GMT 0)
I'll second what subdued has said, props to you for being pro-active and seeking help outside of the "norm". I'm a big fan of Yoga, and all that was listed...I do chinese herbal teas ~thrice daily, I eat dark greens(not just Spinach), via Green Smoothies daily, Kale and chard are full of nutrients. Food Journal helped me a lot.

please follow-up and tell us how the naturopathic visit goes

subdued - self hypnosis to reduce stress, can you elaborate, never heard of this.

sorry for the curt reply, it's late, but I felt I had to reply as I love the path you are headed
Posted 10/1/2011 3:09 PM (GMT 0)
Thanks everyone, love the feedback and i hope i can help you all out as you're already helping me! I stopped weightlifting a few weeks ago as my body started to receive alot of pain and lower energy level. I've been doing ashtanga yoga and meditation for over a year now and love it! I try to not ask myself what brought this on... sensitive stomach to certain foods? a lifestyle that i personally may not be able to handle (moving swiftly but still stationary at a computer), yet active and healthy 140lbs 5"8?

When i got a few tests done just shortly after noticing the blood a few months ago (before pain and frequent bowels) tests showed my pH level was too acidic, and that i also have alot of yeast robbing my red blood cells and that this was going on for some time. Very poor circulation as well, so i began taking Emergen C every day which has helped amazingly.

Like i said in another thread though in the morning when i have the worst stomach pains/bowels at 4am i cant fall back asleep unless i get up and drink a shot of aloe vera orally, and now i do that a few hours in the morning, sleeping has been very hard and i value it so much so i'm a little cranky. I hope that natural remedies will help me and that this is something I and all of us will be able to fix without so many damaging synthetics.

Currently i'm taking prednisone and two anti-biotics (for 10 days) twice daily. I realize that is definitely not enough to help and thats why i cannot wait to go see this naturopath. I'm hoping that my case of UC is caused by other things that are able to fix like my pH imbalance or yeast overgrowth.
Posted 10/1/2011 7:28 PM (GMT 0)
Good luck with that, stereo. You should be advised, however, that steroids have the very worst potential side effects of any drug we're given. Use it with caution.
Posted 10/1/2011 8:40 PM (GMT 0)
I don't consider myself a "victim," yet I take my meds -- I am not a victim because I do so. I think what your doctor meant by "living with it the rest of your life" was that you were going to live with UC for the rest of your life, not the horrible symptoms you were experiencing at the time. It really is a fact that you will always have UC, unless you have a colectomy. However, having UC does NOT mean you will always have active symptoms of it. I have been in remission almost 2.5 years now with no symptoms at all.
Posted 10/2/2011 12:12 AM (GMT 0)
My bad i meant prednisone(as steroids), is what i'm currently taking. I just stopped taking cipro tonight because i'm experiencing side effects that are wearing on me. I dont mean to say anyone is a victim in any way for having to take prescription drugs, i certaintly am, i can just hope that we can all find a healer that will not cause other abnormalities in our bodies, is all. Hope i didnt offend, i respect anyone who is or has gone through this for years, as its only my 2nd month, but i'm keeping the faith and will take in as much information as possible and give back plenty!
Posted 10/2/2011 4:24 AM (GMT 0)
the pred is the worst i've had in terms of side effects. weight gain, body pain, decreased immune system, and so much more. only the high risk drugs (ie. remicade) are worse. hope you do well on it and can get off quickly.
Posted 10/2/2011 4:41 AM (GMT 0)
Really? I dont have much side effects, but i do understand that it "builds" in your system and so since this is only my second week taking this... i wonder. Right after the colonoscopy, i began having serious pains in the morning and day, and just constant blood loss... but i didnt start pred. until a few days after that.

Pred. has stopped me from going 15 times a day in the very least... on the first day i took it though i was very drained. I think a good way to maintain your immune system is to take Emergen-C, i take quarter to half a packet with water a day usually and have energy, havent this weekend though, been feeling so lousy didnt want to overdo it on my stomach. I stopped cipro today though, too many side effects. Just taking Flagyl and Prednisone.
Posted 10/2/2011 8:59 AM (GMT 0)
5 ASA's would help you with your 'severe' UC. It will protect your colon, and prevent flare ups and colon cancer. Pred can only be used for a period of time, and used with extreme caution.

Some on the board have used antibiotics, and the reviews are mixed. You can take 5 ASA's along side with natural remedies. Natural remedies may only help us with this disease to an extent.

I hope you recover well.
Posted 10/3/2011 5:53 AM (GMT 0)
I am no doctor but have seen this movie before. I would try the multiple antibiotic regime but without prednisone. Prednisone is good at masking
the symptoms while the disease is getting stronger, and before you know you need higher and higher doses.

It is great to see your defiant attitude, especially if you are going to pursue your own therapeutical variants. In this disease doctors
are coaches for your own trial and error journey, and you have to make the decisions. And if you ever decide to go for surgery your
attitude is really an asset.
Posted 10/3/2011 2:45 PM (GMT 0)
Thanks everyone, i'm praying for everyone else that we'll all find things that help us, the amount of us drugs we have to take is ridiculous and our bodies totally hate it. I cant wait to see my naturopath in 10 days!!
Posted 10/3/2011 10:33 PM (GMT 0)
Kudos for your positive attitude and your search for answers. In addition to seeing a naturopath, if you're seeking alternative therapies, there is a wealth of information on the Web and several good books I could recommend, if you're interested.
Posted 10/4/2011 11:25 AM (GMT 0)
Make sure you don't stop pred cold turkey--you have to taper off of it. And if you are going to take traditional meds, I'd recommend one of the 5ASAs (Asacol, Lialda, Colazal)--they rarely have side effects and help to reduce (and prevent) inflammation (and therefore protect against colon cancer). And you can still take them with natural treatments.
Posted 10/4/2011 2:18 PM (GMT 0)
I'm kind of puzzled by all the posters on here telling you not to take the steroids your GI prescribed. Prednisone is the most effective medication for stopping a flare in its tracks, and if you take it correctly you should be able to successfully wean off it within a reasonable amount of time. I've had an IBD diagnosis for 10 years and I've only had to take oral prednisone for one episode - my pred taper lasted a total of 3 months. No biggie.

It's probably the prednisone that's making it hard for you to sleep. You should talk to your DR about revising your dose so that you can take the whole thing in the morning. Hopefully you will begin to taper soon.

Some people have really bad side effects from pred, and some do not. I happen to be someone who really likes the way I feel on prednisone. I love the extra energy, I get a little euphoric, and I don't gain weight or get pimples or moon face. Stereo - you sound like you're doing alright on it, too.
Posted 10/5/2011 2:45 AM (GMT 0)
stereofidelic,

please read my thread labeled DONT GIVE UP HOPE...and if you'd like to reach out to me personally I'd be willing to speak to you regarding some changes (natural and diet based) I made that have helped me with UC so far
Posted 10/5/2011 5:57 PM (GMT 0)

kazbern said...

Some people have really bad side effects from pred, and some do not. I happen to be someone who really likes the way I feel on prednisone. I love the extra energy, I get a little euphoric, and I don't gain weight or get pimples or moon face. Stereo - you sound like you're doing alright on it, too.

You're talking about short-term side effects. Prednisone ages connective tissue. So all those old-age connective tissue problems, such as glaucoma and osteoporosis, will come earlier if you've taken Pred than if you haven't ever taken it. The longer you take Pred and the higher the dosage, the greater the damage to the connective tissue.
Posted 10/5/2011 6:11 PM (GMT 0)
Long term side effects can come from using pred long term, short term side effects can come from using it short term. Also, the long term side effects can be multiple not just connective tissue problems.

Any good pharmacy will print off possible short and long term side effects from using pred, if your pharmacy doesn't do this, ask them to or go to one that does or will do it.

Pred has given me a breif but badly needed break from my symptoms, the only reason I've stopped using it is because it stopped working for me. The higher the dose for the longer period of time, the better the break but it's considered a bandaid med or a booster med until maintenance meds kick in, mainly because of the many side effects pred can cause (both long and short term).

Not everyone will necessarily suffer the same effects from taking pred either. It's a powerful med so educating yourself on it is important (which your pharmacy should be helping you with).
Posted 10/5/2011 7:21 PM (GMT 0)
Since the phrases "short-term side effects" and "long-term side effects" can be ambiguous, it might be important to provide clarification:

Short-term side effects often show up within the first few weeks of treatment and resolve soon after treatment is completed. Long-term side effects can sometimes appear months or even years after treatment.
Posted 10/5/2011 7:53 PM (GMT 0)
^^^stating the obvious.
Posted 10/5/2011 11:01 PM (GMT 0)

pb4 said...
Long term side effects can come from using pred long term, short term side effects can come from using it short term.

Yes. I am stating the obvious; however, I wanted to make sure that people knew that long-term effects can also come from short-term use and not just from long-term use as stated in the above sentence. Some may think from the above statement that there is no risk of long-term side effects if they use Pred only for short periods. But that's not true.
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