I'm new and I'm scared and have so many questions

Hi
I am 22 and I was diagnosed with UC in august 2013, but I had the symptoms since october 2012

I lived almost a whole year without doing anything about the bleeding, essentially ignoring it.

after I started asacol in late september, and experienced a major flare up shortly after.
I went into the hospital about 2 weeks after i was going to the washroom 20-30 times a day and excreting basically water and blood.
I required 3 bags of iv and 2 blood transfusions before i saw the ER GI Dr.

I was hospitalized for 4 days, received another transfusion and some more bags of IV.

I was prescribed 40 mg of pred, which healed me in about 2 weeks and I stayed on it for 5 weeks (because no dr called me like they were supposed to)

eventually i started to ween off of it, and was told to try the asacol again. I was at 17.5 mg of pred and a few days after i started the asacol, I started to bleed again

I stopped the asacol before talking to the dr. because I felt that it was making it worse, just like the time i was hospitalized.
This actually helped the symptoms and I decreased the bathroom trips but the blood continued.
I continued to drop the dosage of pred every week by 2.5 until I saw my other GI dr in a different city (as I was home for the holidays)

This dr. told me that i should not try asacol again. and he put me back on 20 mg pred
2 weeks later the blood finally stopped.

At this point, I am becoming scared about being of prednisone for so long, almost 3 months, so i asked my dr if i could start to ween off again.

dr said yes, but that when i am able to see my other GI dr (where I would be living for the near future) i should start azathioprine or remicade.

TODAY - I have just reached 10 mg of pred, but the blood and loose stools have been back for a couple days. (Day 104 of being on prednisone)
Currently going 5-6 times a day of liquid stool (I have a washroom and food log)

I am scared again, and mentally struggling.

I really don't want to take medications like steroids or these other ones that have risks of developing cancer.

I am fairly certain i know what has caused these most recent flares
And ever since the last flare i have been eating really well and trying to heal my body

I really really really want to do this the natural way, and I am looking for support, suggestions, criticisms, pros and cons etc.

My goal is to achieve remission by anyway possible (meds if necessary) and maintain it without meds.

Like I said before, I AM SCARED. I just want to talk about stuff, to ease my mind, I have been reading this forum ever since i was hospitalized

thanks for reading this
- crosses

ps. supps and meds right now
- 10 mg of pred (6 more days at this amount)
- 2-3 probiotics a day
- omega3/q10 pill
- 2 vit d supps a day
- folic acid (I have thalssemia- unsure which kind, seeing a hemo dr soon)
- calcium (was taking choral calcium with no problems, but calcium citrate i believe has caused the loose stools)
- iron supplements (causes loose stools for me, so I've stopped, even though I have low levels of iron)

Please feel free to send me an e-mail!

I'm recently diagnosed too so I don't have a lot of advice to give. I was on Lialda for awhile and I suspect that of making me worse but then as soon as I switched to Asacol HD I started feeling better. Could be coincidence of course since they ate the same active ingredient.

I do get how you are feeling! Right now I will take whatever to feel normal and get back to life but I've always been an anti-med kind of girl. If I think about it too much its kind d of scary. Really scary. I've made peace with the meds for now though and plan to look into other things when I'm in a better place mentally. It is sooooo much to take in and deal with at once.

There are a lot of experienced people here who will help you get going the right direction!

Have you ever used any mesalamine-based rectal meds?

Oh, wait. Never mind. I managed to forget that it appears you're intolerant to mesalamine.

IMO, it wouldn't hurt to try the natural approach. However, I do feel that it doesn't work for more people than it does, and it takes a whole lot of dedication.

That said, one thing to remember about meds like imuran/6mp is that a lot of the really bad side effects are seen in people who take it as an anti-rejection drug following an organ transplant, as they take it in higher doses than UC patients.

crosses,

Welcome to the forum.
Sorry for your recent diagnosis and your suffering with this terrible disease.

Sounds like you are intolerant of the mesalamines to me.
You're right to be worried about the long term effeccts of prednisone; imo the most worrisome is hormonal chaos and bone density loss and breakage - and for that I would recommend you take Algaecal and Strontium ( which is what I take).

As far as your UC is concerned, here's what I can recommend which has helped put me in remission:

As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me in the hopes it might help you too.

Some meds work for some and not for others.
IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by taking certain proactive steps, it put me in full remission.
My steps to remission included: diet modification, various supplements, probiotics, and LDN, low lose naltrexone..

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Crosses, as you have said you've been in the hospital multiple times over uc, I think natural approaches are not going to miraculously cure you. You are going to need to get on some uc meds, such as the Azathioprine or Remicade as your doctor recommends. You can try the natural approach in addition to the medications, as that may help further ease your symptoms.

Azathioprine takes multiple months to build up in your body to therapeutic levels. Remicade often works fast, for many. Both of these medication have very rare side effects. You really need to put the risk vs benefit of these medications into perspective. A good read is "Balancing the Risks and Benefits of Treatment For Inflammatory Bowel Diseases" by the Crohn's and Colitis Foundation of America:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Prednisone use for multiple years can cause serious issues, don't worry about a few months on it.

I've been on prednisone for 6+ months (sadly without it helping my symptoms!!) So I know how scary that can seem.

I became ill in June and am pretty sure I know what caused my first flare as well... though I had mucous in my stool for years. I guess UC was always there.... hiding... waiting to strike! :D

I am a former vegan/ex-hippy gal;; I never thought id be someone to take meds for the rest of my life. After trying Lialda and running out of pills... all progress I had made relapsed and ten times worse.
I'm over my hippy pride... I will take whatever meds I need to, to not be taking 20 bloody mucous diarrhea poops a day again. This flare has caused so much pain and suffering for me. I will do anything to get out of it and feel human again.

Maybe someday doctors will find a way for us to take mostly natural steps to keeping our disease in remission but I dont see that for a while. Still so much to discover about this crazy disease.

Im sorry you have to join our terrible club and go through this disease with us. It is very physically and mentally draining. I have anxiety and depression on top of my UC so believe me when I say that I know how hard it can be :) :)

Its all day by day. And trying to laugh and smile. :)

Please feel free to email me if you have any questions or want to talk. Im not a veteran of thia disease but id say im pretty darn experienced with the psychological affects of first being diagnosed. :)

Thank you guys so much for everything

I'm still thinking a lot!
Good news though. I think I was able to get my diarrhea
Under control with diet!

My dr finally got back to me and basically said to go back up to 20mg of pred if the bleeding gets worse

But I'm extremely happy to not be headed back to the hospital!
I'm going to stay dedicated to focusing on things I can control like diet and exercise and work my ass off on being more positive.

I have another question though,

I have noticed many users on this site showing that they are on multiple Types of medications at one time.

For example, Someone using pred(strong dose)and remicade
Or someone using humira and mesamaline drugs

Isn't the idea that one of the drugs should alleviate the problem ?
(I believe this may be a dumb question)

Welcome to HW Crosses. I'm sorry you are here but as you can see, we are all in the same boat as you. There is a wide array of experiences so you will get many different responses.

I am mostly intolerant of most mesalamines. I was on Asacol and off/on Rowasa for many years when my body decided it didn't like it. Than I was placed on Colazal, which is a basalazide. After 6 years my body didn't like that either. So here I am. I am on now Remicade and Apriso (which is a mesalamine that my body likes...so far!) Apriso is mainly designed to keep a Uc'er in remission tho it has been used for treatment purposes too. BUT my saving grace over the years has been Colocorts. This is a steroid enema. I have managed to avoid prednisone in 22 years of having this.

Do you know the extent of your Uc? If you are intolerant of mesalamines (which is the primary medication found in Asacol, Lialda, Pentasa and the rectal med Rowasa), Colocort may be the best thing to try to go to once the pred is stopped. Colocort is a steroid enema but it doesn't have the systemic reaction like pred does.

You can try to control it naturally, but it can be very hard to do. And it may take longer than the meds to achieve the result you are looking for. However, controlling what you eat may make things a bit easier on your system. I like the WHITE diet personally. Potatoes, rice and chicken. These things are easy to digest and it allows your colon to heal. I tend to avoid things like spicy foods, seeds, nuts, popcorn, celery, corn and raw veggies.

Whatever you decide to do, know that we are here to help you in any way you wish. We have all been in your shoes so we know the fear.

crosses,

You asked about LDN side effects - these are virtually none... some sleep problems, vivid dreams, some people report a cold or flu within the first few doses which lasts 24-48 hours ( this is a reaction to the immune system gearing up and clearing out the system).

And these are really nothing when you compare to the side effects of the mesalamines, the biologics, prednisone.

I want to try LDN so badly. none of my dr's know anything about it. My mom begs me everyday to find a dr to just give me a prescription.

I have been keeping a food log since my first flare up after the hospital, and a washroom log since the day i left the hospital.

I have entirely eliminated dairy from my life (>:( I LOVE CHEESE), but grain seems to be alright with me, although i will eventually try a gluten free month.

getting my body out of the diarrhea phase with diet, was a huge moral boost.
this morning i went to the washroom and was pretty sure i didn't see any blood, but a couple hours later, there it was (less than yesterday)

i basically have a list of foods/supps that could be bad
a list of food/supps that has proven to be bad
a list of foods/supps that haven't hated me yet
and a list of foods/supps that i have heard to be good


it's amazing reading your guy's struggles and trials, It is really great to have both sides brought to my attention.
I know for fact that I have gotten less scared about medications and have grown more secure about my goal to try the natural way

thank you so much

to those who offered to email with me, I will gladly take that offer. Whenever i talk about it, i feel better. I will refer to this thread when i email you.

also i plan to be quite active on this website now that i am here

Hey Crosses :) I am 22 years old and was dx'd with UC in the beginning of Dec of 2013 but experiences symptoms at the beginning of Nov, I let my symptoms get badbefore getting help and had to be hospitalized for 4 days and lost 30lbs in the process. I likewise share in your desire to get this condition undercontrol and keep it that way with a good healthy diet and natural meds. I have an older friend who is the owner of a health food store who was dx'd with UC 15 years ago, his was so bad that the doctors recommended for his colon to be removed, he did not take their advice and sought out a new GI who put him on a very strict diet and herbal supplements, fast forward 15 years and he is symptom free and takes no medication, his last flare was 10 years ago and he blames it on him trying diary again. Now keep in mind this guy eats very healthy (no meat, no dairy, no gluten, no refined sugar and hardly any processed food) and drinks only water and real juice. He sells this colon formula in his store and he says it is the main thing that healed his UC (the ingredients are listed in my signature)

Everyone is different and since it worked for him might not work for you but I think its worth a shot. I have been taking this colon formula along with aloe very juice, l-gluatmine and probiotics while slowly tapering off of prednisone (at 20 mg's a day) and soon gonna cut back on Lialda. For about 2 weeks I have been completely symptom free and back to normal bowel movements with no urgency and no blood. I am not saying its a sure fire cure but so far its working and I will continue to update as I wean off the meds more. I also follow his diet pretty close (sometimes a splurge on sugar but as far as gluten, diary, and meat [except for fish and eggs for the protein] I keep to the diet pretty well).

I hope the best for you and may God bless you in your efforts to conquer this annoying disease! Keep your eyes on our Heavenly Father he will be the only one to get us thru this!

Ctech - I know how much you want to be all natural... but I do suggest working on tapering Pred first and once you are completely off of it, then trying to taper Lialda. Don't want to shock the body too much! And coming off of prednisone is hard enough, without taking about the Lialda too.

When I first got sick in June and put on Lialda in July... I thought I was heading into remission in August. Poops were forming, less blood, no urgency. But my samples ran out. I missed a couple days of the Lialda. BAM!! And here I am 5 months later... still in a flare.


I personally am not a fan of any of the "suggest diets" because I agree... I look at those lists and see foods I know I can eat... and foods I know I cant! :D

Aloe vera for me has been great. Unless I drink too much... then it has a laxative effect... which I don't need help with :D