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i am at the end of my rope

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Crohn's Disease
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Posted 10/15/2007 8:19 PM (GMT 0)
i am new to the forum. i have been in escalating pain for the last year and a half. the only hard evidence that i had something "real" was a capsular endoscopy showing jejunoileitis and positive prometheus serology- in other words, most of my studies were normal, and my fever and joint pain were subjuctive, so i wasn't taken seriously for a long time. Since diagnosis, I have failed pentasa and 6MP. steroids are the double edged sword that we all know, and they make me very depressed. I was started on remicade, and have had 2 infusions so far, with an atttempt at steroid taper that resulted in a flare. I see a pain management specialist, andI am on a lot of pain meds, and i still am in agony. Every night, and after every meal. I don't know how long I can bear this. If there is anyone with any kind of advice, please let me know.
Posted 10/15/2007 8:38 PM (GMT 0)
That sucks, I don't have any advice really. Just wanted you to know you have a fellow crohnie that knows how you feel. I'm new to the forum as well. I'm sure some of the others can help you out a little more.
Posted 10/15/2007 9:08 PM (GMT 0)
If you haven't considered this already, you could ask your doctor about trying total enteral nutrition (special type of liquid diet). It's not used much in the US, but can be very effective, especially for people whose disease is limited to the small intestine like yours. If it's going to work, you will usually see substantial improvement within the first 10 days. If you respond, then you can stay on it for a few weeks while you taper the steroid.
Posted 10/15/2007 11:26 PM (GMT 0)
Have you tried low roughage diet and chewing your food really well? Hang in there maybe you need more IV before it works better. lol gail
Posted 10/15/2007 11:37 PM (GMT 0)
It's good to hear that someone else struggles with everyday life just like me. I haven't even been able to find a doc that will give me pain control at all (only a few here and there) and I've been really depressed lately b/c I feel like doctors think I just want pain meds and pitty sometimes. Thats not the case at all, but I hate that you are feeling this way. I can see why you are losing faith a year and a half is a long time and to make it worse, it seems like an eternity when feeling like somebody is stabbing you in the gut with a knife all the time! It's hard for people to understand what we go through sometimes. If you ever need anyone to talk to I'm here. I don't have my mom, so that makes it rough! I feel your pain and hope that you get to feel better really SOON. I'm on Remicade also and had my 3rd treatment last Friday. I haven't been able to get any relief on the other meds and the Remicade so far hasn't helped that much either. So I dont know what else to do I have been considering surgery just to get remission, its a big step tho. Good luck and take care.
Posted 10/16/2007 2:01 AM (GMT 0)
i'm in the same boat as you. meds and surgery still haven't put me in remission. I'm still on meds but am trying the maker's diet and probiotics. I have finally seen some improvement with less obstructions.
Posted 10/16/2007 7:36 AM (GMT 0)
We all know what you are going through and believe me when I tell you that you are not alone. When I can't tolerate any food, I go on Boost or Ensure for a few weeks, lots of water also, and lots of rest. Do you have a full time job?
It sometimes takes a while to figure out the right combination of meds...we've all been there. The trick is to not try to do this all alone. You have this Healing Well family that is here to listen, support, offer advice and I know even cry with you at times. You'll also find that we are good at making each other laugh which is sometimes the best medicine.
Have you talked to your doctor about an anti-depressant. Dealing with chronic illness is very difficult because it is never-ending. That takes its toll on the body as well as on the spirit. For many of us , an anti-depressant has made a big difference. It doesn't take the pain away but helps with our coping with it on a daily basis.
Sometimes the antidepressant is only needed for a little while, until you get back on your feet and able to take the bull by the horns again so to speak.
Hang in there....come visit us often....we will be watching and praying for you.
Mary
Posted 10/16/2007 12:01 PM (GMT 0)
thanks for the note. i started an antidepressant- i knew that i needed one, and sought help. what has been so discouraging is that the first gi that i went to discounted my symptoms in the absence of "hard data"  and when i told him that i was trying to be proactive and was seeing someone for antidepressants/therapy he wrote on my chart that i was consulting a psychiatrist and that my pain was functional. this was prior to my prometheus testing- but after a while you doubt yourself. what a disease.

Posted 10/17/2007 4:30 AM (GMT 0)
Some of us are experimenting with low-dose naltrexone. Here is some info about it:

http://www.lowdosenaltrexone.org/

There is also an LDN forum:

http://ldn.proboards3.com/index.cgi?board=forum

I bought (regular dose) naltrexone online from riverpharmacy.com. Here are instructions for making it into low dosage:

http://goodshape.net/HomemadeLDN.html

Is this the best way to treat Crohn's (or does it even work at all)? I can't say for sure. I started on it less than a month ago, and though I feel better, I think it's too soon for me to say. I figure one should be on it for at least two months before making any definitive statements about how effective it is. Whenever you start on a new drug, there is always the possibility of the placebo effect, or the possibility of coincidental remission. So I'm holding off before I make an announcement that I've found a "miracle drug." LDN may work wonders, or help just a little, or maybe is no use at all. But since you sound desperate, I thought I'd mention it, and hope it really does work for you.

good luck,
Robert
Posted 10/17/2007 8:18 AM (GMT 0)
Hi,
if you are in the US, there are pharmacy shops around the whole nation making the correct doses of LDN, low dose naltrexone. If you join the group that I use at www.yahoo.com, and register as a member, just like you did getting here, make your own email box in there, and join the group "lowdosenaltrexone", (do a search in there for it), you are welcome to ask questions about LDN and pharmacists. Even your own GI or doc CAN, if they want to, write you a rx.

I use LDN since 1 month, I had a lot of pain too, I have Crohns in jejunum, and my intestine in that area is either narrowed because of inflammation, or narrowed because of a stricture in the same area. The barium xray couldn't tell. I had pain each day, some days severe pain. I also used to vomit and had obstructions. All this is now, I hope, history. Time will show.
I feel like I felt before I got sick. Only small pain some seconds a day due to some vegetables or fibrous food passing the troubled area.

Low dose naltrexone, if you do a search in this forum, search for naltrexone or LDN, you will find hits here, where we talks about it.
Some ppl. are sceptical, of course, it's always so when a new medicine that is made for something completely different, also helps a lot of autoimmune diseases. Like a "one pill cure it all" - that you'll find a lot of on the net. This naltrexone already exists. It's given to treat narcotic addicts and alcoholics. It's blocking the endorphine system for them. For us, with autoimmune diseases, it also blocks the endorphines, but only for some ours at night, because of the small dose we are given. Only 4.5 mg. Taken each night. The other ppl taking it uses around 50 mg to block the endorphine system completely.
While our endorphines are blocked for some hours at a low dose, it makes the body react and produce even more endorphines for some hours at night. This hightens the immunesystem and make a balance between different kind of killer cells. While prednisone calms down, supresses the immune system, low dose naltrexone is balancing it. Thousands of anecdotic histories tells that ppl. with Crohns gets better. Some, 67 % gets in remission, and 89 n% get better. A small pilote research, done by dr. Jill Smith, shows this. Ppl. participating had normal to severe Crohns. We are now waiting for some MS researches (multiple sclerosis) and one Crohns research.

Look at my profile down here to find out more. Also, look at this site in here, and please do a search in here for even more info. It's important to tell you that this medication is inexpencive too. The insurance company should applaud you when you bring the bill. Around 60 cents a day... :-)
Important too is to know that this medication only gives minor start up side effects. Some get sleeping trouble the first 10 days, some gets a bit warmer at nights and some at days. I got some minor skin trouble first, but it went away after a week, now my skin is better than before.
Ppl. gains or looses weight. if u have weigh under the average, you'll gain, and the opposite.
Some ppl. also gets vivid dreams during the first week. My dreams were only funny, I miss them :-) .

Have a look at these comments:

https://www.healingwell.com/community/default.aspx?f=17&m=935835

Hope you'll find out more!, Good luck to you!
From Ingrid
Posted 10/17/2007 9:17 AM (GMT 0)
Oh, I forgot to say this:
I have had severe pain. I learned that it is important to:
1. avoid long fiber vegetables, grains, seeds
2. chew your food well, and eat your food in slow motion
3. Drink a lot of fresh water while eating
4. On days when the pain is severe, use liquid diet
5. Write down what food give u increased pain
6. Eat probiotics and yoghurt containing good bacteria
7. Avoid white sugar
8. Coffee could make more pain, I use decaff

And, LDN could only be used by ppl. taking non narcotic pain killers. LDN and narcotic painkillers are contraindicated. LDN could not be used by immunosuppresants like remicade and humira, and not with prednisone. LDN do another work in the system, and it won't work while using pred etc.

From Ingrid
Posted 10/17/2007 3:06 PM (GMT 0)
thanks, everyone
Posted 10/17/2007 7:32 PM (GMT 0)
I too live in constant pain and haven't had any real relief since 2003. I've had CD since my teens and have never had a good remission, excepting a short surgical one. I also went through the misdiagnosing/not being taken seriously. Sometimes you can do everything right and still suffer. It's just that kind of disease.

Another "property" of the disease is that what works for one doesn't necessarily work for another, partially due to the intestines being so diversified as to its particular functioning.

Arthritis is such a problem for me; it is so painful that it's a major reason for my depression. A person can only tolerate so much pain.

I really offer no advice, just support. You are definitely not alone.
Posted 10/17/2007 7:41 PM (GMT 0)
Wow, I am so glad that I ran across this forum today. I am one of those people who have heard of others that have CD, but do not personally know of anyone. There are friends and family you can talk to, but no one really knows what you're going through or how you feel day-to-day. Trust me, survivor49, we all feel your pain (literally).

I was first diagnosed (and had first surgery) in 1987 just after graduating high school. Put on Pentasa and Alsulfadine, and was successfully in remission for seven years. Second flare-up (and second surgery) in 1994. Third flare-up in 2001. GI doctor told me that couldn't keep cutting parts out. Put on 6MP and started Remicade in 2002. Been in remission (knock on wood) since. Still occasionally have bad days/weeks. During these times, I've found that a week-to-10 days of liquid dieting (or soft diet) gets things back on track. The doctor suggested it and it's pretty much worked every time between Remicade infusions.

My biggest problem the last few years has been kidney stones. I have an attack of one or two (boulder-sized) every few months, and some of the pain could rival my CD.
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