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Posted 5/25/2011 4:32 PM (GMT 0)
After the worst few weeks of my life i am finally seeing my doctor tomorrow. Remicade has failed completely for me just like every other drug ive tried ( ive tried pretty much all of them) and I'm in awful shape, going 20+ times daily, sleeping and lying in bed for usually about 18 hours out of the day, and barely able to eat at all, yesterday i ate a half plate of mashed potatoes and that was it. My energy level is completely shot because of it and so is my social life. Ive been getting steadily worse for over a month now, and my doctor finally has time to see me tomorrow. I'm nervous to say the least, I'm hoping he will just say "hey lets try Humira" and wham its done i feel better...but for some reason i feel like that isn't going to work either. I don't know if i can take another disappointment, and i know for sure that i cant even survive another week in the state I'm in. I'm almost ready to have the surgery, its just that i know it takes a while to get done and used to and i just worked four years of my life to get accepted to teachers college this year, which i will have to drop out of if i will be away for any extended period of time. I feel like no matter what I'm completely screwed. I guess this is just another rant that i seem to drop on here every once in a while, it just feels nice to rant to people who actually understand everything i am going through. I know there are tons of alternative medicines to try, but to be honest i just don't have any faith in them. On the other hand i do believe a radical change in diet might help, but i love my food and know that i don't have the will power or the financial means to put myself on a specialized diet. I guess basically, can anyone tell me what to expect with Humira, will it work? and be honest with me about surgery and how it has worked out for people? im only 21 and feel like its something major that i don't want to do to myself so young. Anyway sorry for the really long post and thank you for your time and support.
Posted 5/25/2011 4:44 PM (GMT 0)
So sorry about how bad you are feeling. I'm not at the point you are at, but I can totally relate to the "no social life." Make sure you tell your docotor how bad you are doing. I usually try and put a smile on my face when out in public and I think this has harmed me medically. I've read past doctors notes and they have written I can't possibly be in much pain and appear so nice. Anyhow, if you are like me at all, DONT downplay anything. Let him/her know how horrible you feel to put you on the Humira. I haven't been on that so I cant help there.

Anyhow keep us updated and I hope your appt goes well!
Posted 5/25/2011 4:50 PM (GMT 0)
Thank you, the pain is worse then i have ever had, last week the emergency doctor offered me pain killers and i turned him down because i dont like adding any more drugs then i absolutely have to into my system. However within two days i was rummaging through my cabinet to find leftover percs from having wisdom teeth out. I basically have to take a half of a perc to function for two hours, its the only way i can actually get up and move around at all in a day. I think the worst part of it all is that everyone who has no idea how sick i am is telling me how good i look because of all the weight I've lost, while meanwhile i feel awful and cannot wait to start eating again.
Posted 5/25/2011 5:10 PM (GMT 0)
Have you read other posts about "alternative" meds? I was the same as you. Could not sleep for more than an hour or two before having to jump up and race to the bathroom, sometimes I would actually make it. Was laying prone at work just doing phone calls. I was amazed at how much blood and mucous I had passed over 1.5 years. It took 6 weeks but LDN kicked in and I have not looked back. I just posted about my remission as have others. Have faith. The LDN works and I have not seen a down side. Losing the colon should be your last resort. What is your objection to "alternatives"? My limited understanding is that Remicade is far more intrusive to the body than LDN, read the warnings that your Dr. should give you about this drug. There are a lot of us who have had phenomenal/miraculous success with this drug and for me it is only $26 or so per month. Throw in $15 for Aloe juice and $20 for probiotics puts me hundreds of dollars below where I was (given the cost of Remicade which I took once) and many thousands below the Remicade. I have been symptom free for 6 months.

Your post is fine as sharing helps. That is why I am sharing what I went through. I wish I had found this site up front. What you have described was my worst which seemed to last about 1 year. The other 1/2 was bad but not as intense. Keep your faith up.
Posted 5/25/2011 5:20 PM (GMT 0)
To be honest i have never even heard of LDN, what is it and how does it work? I have heard of many people using things such as probiotics and fish oils and some really wierd homeopathic therapies but was never interested in trying them. Part of it may be because i have never had to worry overly much about the costs of my medications, i live in canada so visits to my GI are covered and i have pretty decent medical benefits which cover pretty much all of my prescribed medication costs. I guess this has kept me from seeking alternatives in part, and i guess part of it is that from the beginning my doctors have cautioned me against it, telling me that it was unnecessary and potentially harmful. I've always been more trusting of what a doctor will tell me is good for me then what i can find on the internet. To be honest though, if humira fails as well i will probably go ahead and just start trying every random treatment i can find before having the surgery.
Posted 5/25/2011 5:26 PM (GMT 0)
:( It sucks being 21 with this disease (it sucks being any age with it, but for me, it's been particularly difficult as well). I think you need to just take a deep breath at this point, and calm down a bit. I know it's difficult, but you seem quite upset from your post, and you need to get yourself into a clear thinking mindset. I am always willing to try something new, and I think that seeing what the doctor has to say is step number 1. Also, there is always the option of getting a second opinion. Sometimes, another doctor will have a better suggestion. Don't panic about teacher's college either. I myself am going on for a masters, and doing it with UC. BUT, stressing yourself out about it will likely not help. For now, you just need to take things one step at a time. First, see your doctor and find out what your options are. Then you can deal with whether or not you will use it or make a more serious choice such as surgery (which, if it isn't one of the doctor's suggestions, you should bring it up to see what kind of response you will get).

As someone wise once told me about living with any sort of chronic illness: each day will be different. Some days you will feel like the world is on your shoulders and you can't get out of bed, and the next day, you'll feel like a million bucks. Some days you will be told the meds are no longer working, and other days you will be told that the med is your miracle drug to helping you live symptom free for a little longer. Take everything one day, one step, one test, one doctor's visit at a time. You can do this...you've got a whole community of people who understand here to support you!
Posted 5/25/2011 5:48 PM (GMT 0)
Hi Chris -

I am sorry to hear that you are feeling so badly. I completely understand. You and I started Remicade around the same time (end of Jan for me). Remicade so far for me hasn't worked either. It works for about 10 or so days and then stops working. My Dr tried a double dose last time -10mg/kg, but had to put me back on pred because I was feeling so badly by about 3 weeks in. I am on pred now until my next double dose of Remi in two weeks, and we'll see if that works.

I am in Canada too, and I don't think that Humira is approved for UC. I know that many Doctors may "adjust" their notes for UC patients to suggest that there is Crohns, so that we can get Humira.

I have tried some of the alternative stuff as you can see by my signature. I haven't tried the low-dose Naltrexone. Ask your GI about it. Maybe he will give you the green light to try it.

I am curious to hear what your Dr has to say tomorrow. Will you let us know?
Posted 5/25/2011 5:49 PM (GMT 0)
Thank you very much, the support on this site has helped me a lot over the past few months and has helped me get through some very difficult times. I put on an extremely strong face for my family and people close to me because unfortunately they have been through this before with another family member and it affected them all greatly. My uncle was diagnosed with UC and had it extremely bad, this was just under twenty years ago when medications were no where near as good as they are now. Unfortunately he was dealing with many other problems at the same time and ended up taking his own life. My family is in a constant state of worry over me so i try and be as strong as i can for them, putting on a good face and trying to make light of every situation. However, when i come on here and talk to people who truly understand, its kind of hard to maintain the strong face that i do every where else. It feels good to be able to come out and say how much pain im actually in, and to talk about how difficult it is to get through day to day life. I know that eventually things will get better one way or another and that one way or another something will work, its just that the waiting and the experimenting all really wear you down. Hopefully things will be better sooner rather then later, maybe my next drug will be THE drug for me, i guess ill find out soon enough.
Posted 5/25/2011 6:12 PM (GMT 0)
chris

Sorry to hear of your turmoil.
Why would cost be an issue to try diet modification?
Two of the most common problems are gluten and dairy. It doesn't cost a dime to remove them from your diet.You don't have to buy "special food" but it does require personal self-control and thinking ahead to plan what to eat.
You can eat in any restaurant. Eat a burger with no bun or chicken or fish, whatever. Don't eat ice cream or drink milk. These are just a couple of examples.

The diet modification I am on is very healthy, we eat protein every meal and more veggies and salads than the average person. If you don't like salad don't eat it.

But please don't say it costs extra money to try and help your UC by doing a special diet. It only costs as much as you want it to.

Best wishes. We all know the bad places UC can take you.
Posted 5/25/2011 6:41 PM (GMT 0)
Hi Chris,
I'm sorry that you're feeling so low. It's certainly understandable. and then because of your uncle, to have your family over-vigilant in watching you and then you having to put on the "strong act" - I'm sure when you're just fed up that adds to the burden.

The surgery sees to be a good option for many - most people are just sorry they didn't do it earlier. But, as you said, it does take some time. You might want to check out the ostomy forum to ask some questions about all that.

In the meantime, if I were in your shoes, I would do exactly as Imagardener suggested and try the diet thing. If not the complete SCD, I'd go gluten and dairy free for a while and see what happened.....

I'd try fecal transplant (DIY, at home)... I'd try LDN .

I've tried slippery elm and it's helped some to decrease the bleeding (it coats the GI tract... but also because of that, must be taken between meds) and probiotics do help me a lot, though I've tried several kinds before getting to one that helps the most.

I know what you mean about painkillers, but.... I accept those when they're offered. Not only do they help the pain, but for me because they tend to cause constipation in some folks, they slow me down a little so I'm not having quite as many stools a day. (It would be really important to make sure we with UC don't get constipated from those meds! But I figure my daily Metamucil helps protect against that.......)

Anyway, there are some ideas. We sure do understand here!

Keep us posted on how you're doing.
Posted 5/25/2011 7:17 PM (GMT 0)
I know you would be disappointed to have to put your college plans on hold, but remember that it won't matter that much 5 or 10 years from now that you did.
I know it sucks to think about surgery when you are so young, but I wish I had considered it more seriously when I was young. Imagine needing to tweak drugs and diet for the rest of your life, and deal with the pain and anxiety, like I did for more than 20 years. I was lucky Remicade worked for me, but I would not wish all my misery during my 20s and 30s and 40s on anyone.
Posted 5/25/2011 9:27 PM (GMT 0)
When i said diet i meant something really radical such as following the full scd diet, I have been dairy free (for the most part) since February and also have been on a low residue diet that my doctor suggested where i have not been eating foods high in fibre such as most green vegetables and whole grains while im flaring. While i have not gone gluten free i have limited my intake of gluten to a certain extent. These diet restrictions have done nothing on the whole for me, and yet i stick to them. However know that were i to try and completely follow the SCD diet or something similar i would not have the willpower, or desire, to do it on the off chance it will help. I know for many people these things help to a large extent, however diet has never been a major trigger of a flare for me. For the first five years after i was diagnosed i could literally eat whatever i wanted whenever i wanted and never had a single change because of it, the only thing that ever seemed to go hand in hand with a flare or with not feeling well was stress.
Posted 5/25/2011 10:48 PM (GMT 0)
Chris,
So sorry to hear how bad things are for you at the moment. Don't despair! See what the Dr says and ask about LDN and other treatment options. As for the diet, I too could eat whatever I wanted my whole life without it affecting my condition, in fact, during my last flare which lasted 6 months (my longest), I tried to limit dairy, wheat, veges etc with minimal effect, and noticed that after eating my normal diet again, I finally went into remission!! Go figure!!! All the GI's I've seen say that diet doesn't cause flares, and to just have a healthy balanced diet. An anti-inflammatory diet may be beneficial too..see Dr Weil.com for his food pyramid! Just healthy food!
No discredit to SCD and other diets, as they are beneficial, but Chris, just go slow and healthy and see if it helps. I was terrified of eating anything during my flare and in the end I just thought, enough!
Keep us posted on your progress, and all the best.
Posted 5/25/2011 10:57 PM (GMT 0)
Chris-
I know how you feel. This time last year I came to the realization that meds just were not going to help me. Remicade was my last resort and it didn't work. I had J pouch surgery last June and it has been such a blessing. My UC is gone! And I was one sick puppy let me tell you. Yes is does take a while to get thru but what's 6 months compared to the rest of your life? It's a really hard decision and a scary one and I also believe one knows when they are ready for surgery. You have to get to that point where you have just had it with being sick and want a better life. Good luck to you!
Posted 5/26/2011 1:38 AM (GMT 0)
I was 22 when I got sick I wasted all of my 20s, being sick. In a heartbeat I would go back and have my colon out the first day I saw blood.
I didn't want to try. A lot of diferent diets because I felt like I was giving up the foods I liked thefew I could still eat I ddnt want to try more drugs and just wait on them to fail. S I chose to take my life back to win! Anyway if you were to hve surgery at the beginning of summer you could start fall semester.
Good luck!
Posted 5/26/2011 2:09 AM (GMT 0)
I tried double strength Remicade and also Humira weekly. I had no results. I have been in bad shape for over two years with nothing helping. As soon as I taper the Prednisone I flare again. I just recently started the transdermal LDN. After three weeks on it my stools started to form up. I have no bleeding and no mucus. My urgency is also doing better. You have nothing left to lose. See if you can try it. Don't do the pills. They made me really sick. I have literally no side effects from the LDN cream.
Posted 5/26/2011 2:21 AM (GMT 0)

Boxermom2 said...
I tried double strength Remicade and also Humira weekly. I had no results. I have been in bad shape for over two years with nothing helping. As soon as I taper the Prednisone I flare again. I just recently started the transdermal LDN. After three weeks on it my stools started to form up. I have no bleeding and no mucus. My urgency is also doing better. You have nothing left to lose. See if you can try it. Don't do the pills. They made me really sick. I have literally no side effects from the LDN cream.

I have heard great things about the transdermal LDN. Is this something that you have to continually take, even when in remission?
Posted 5/26/2011 2:43 AM (GMT 0)
It is a cream I put on my inner arm at bedtime alternating arms each night. It boosts the immune system which is opposite of the biologics and drugs like Imuran. Several of us on here are using it. We have a post going with updates. It is worth looking into if everything else failed you like myself. Today I almost felt normal. Had a really great day with hardly any urgency.
Posted 5/26/2011 12:06 PM (GMT 0)
chris_123,,

So sorry about all you are going through... and you have come to the right place for advice and support. We are all here for you. Unfortunately family and friends just don't get it, and it's embarassing to tell them how we are really doing - with all the details of  pains, bm, urgency, etc...

Chris, I am one of those that has been greatly helped by Transdermal LDN, and would urge you to try it. Here's the info on it from another post:

www.healingwell.com/community/default.aspx?f=38&m=2079694

I was diagnosed with UC and was bleeding pretty badly for close to 1 year, tried various regular meds which didn't work, they wanted me to take Remicade and I refused. Then I got the remicade or colon removal talk, and I said NO. I did lots of research and found LDN. It saved my colon, and in the process I started getting my life back.

Please do your research on it. To me, it should be the drug of first choice, rather than of last resort, because it has almost no side effects, is cheap. But don't be fooled: most doctors will NOT prescribe it for you. You'll probably need to go to an alternative doc to get it prescribed. If you do decide to go for it, make sure you get the Transdermal LDN prescribed.


 

Posted 5/26/2011 12:08 PM (GMT 0)
chris_123,

P.S. Here's the full info on LDN, so that you can do your own research.

Please let us know how you're doing.

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me alot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other Crohns patients have experienced when used LDN, choose Crohns Disease at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.

Posted 5/26/2011 1:49 PM (GMT 0)
Hey Chris,

everyone's symptoms/circumstances are some what different but I feel your pain.

I think we're learning about our trueselves in a really hard way.
I've lost my social life too.

And I'm sort of embarrassed to my friends what I'm going through, not that I want to tell them to have pity for me but THEY all wonder what I'm doing and I don't want to say, I am sick from this weird disease that none of my friends know about.

Every one of my friends are graduating from college this year and I'm like the only one behind.

I just wish that hopefully soon I can do things like enjoying my dinner with friends/family while having a smile on(no pain from any food)
I used to be so active before the disease manifested. Was in basketball and volleyball team in hs and performed on special occasions in college.

I want to go back next semester with full force. Keep your head up man, before you achieve you must believe.
Good luck to all of us :D
Posted 5/26/2011 5:05 PM (GMT 0)
Chris_123..

My son was also so sick and had just gained admission to the university of his choice to start his first year of undergrad.. (How he managed to get the needed grades while so sick in high school I have no idea). He was so concerned as to how he would manage in university. To make a long, painful story short he ended up having surgery the same week that he should have been starting university. After talking to the admissions office the decision was made for him to defer his admission for a year. He took that time to go through the surgeries and regain his health. And that is exactly what he did....over the year he completely regained his health and his life. The next September he headed off to university without any cares and had a great time (maybe a little too great....marks could have been better...lol). Anyway, this could be an option for your teachers college. With a doctors letter they should be able to defer your admission, or if you have already started give you a year off. I would certainly look into it. It would take a lot of pressure off of your situation
Posted 5/26/2011 11:14 PM (GMT 0)
I have been thinking about deferring my teachers college for a year, but it brings up a few difficult problems. Taking a year off from university means i have to start paying off my school debts and it also means that i will no longer be covered under my parents benefit plans. I asked my GI today about LDN and he said he didnt believe in it as a treatment, but if nothing else works i will be able to convince my family doctor to prescribe it for me, i looked it up and i believe there is a pharmacy in Toronto not too far from me that sells it.
Posted 5/27/2011 12:02 AM (GMT 0)

Chris,

Sorry it's been so tough. It doesn't surprise me that your GI refused to prescribe you LDN, most doctors don't believe in it, even when one of their very own - Dr. Jill Smith of Penn State completed 2 studies - the most recent one in 2011 - showing how Crohns patients go into remission on LDN - published in their Gastroenterology Journal. Here's the link to the study, btw:

http://www.ncbi.nlm.nih.gov/pubmed/21380937

I hope you do your research, and if you decide to take it, I would recommend your taking it as a Transdermal LDN. If you've read my earlier post, I explain the reasons why.

As i may have mentioned it before, to me LDN should be a drug of first resort, not last resort.

I hope you start feeling better soon.

We're all here for you.

Posted 5/27/2011 12:47 AM (GMT 0)
I'm sorry that you are getting bad.  If you want to try Humira tell your doctor that.  It is your choice not his and if you want to go on it you should.  Also, just a question to think about if you end up having surgery(which it sounds to me like you will) will you be thinking I wish I tried diet or other things, like humira, before surgery.  This is my mind set.  I am on remicade I tried all the lower drugs and I will try humira I haven't really tried diet or accupuncture but I will before surgery.  Just so I know that I tried everything I could just in case my surgery would have problems(like a permanent bag). This is just how I feel.  Good luck and maybe surgery is better than living like you are.  I will tell you before the remicade I was horrible(15 times a day) and I couldn't go anywhere. I would have the surgery in a second if I was that bad. 
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