Sick of this - please help!!!!

[doglover11]

:depressed:

Here is my story:

I am a 28 year old white female who lives in Chicago. I am getting married in November, have no children, work full time, and, in addition to CROHN'S (AKA the devil's disease) also have severe asthma, allergies, and ulcerative esophagitis. I have had IBD symptoms since I was a child - diarrhea, cramping, feverish, sleeplessness, anxiety, bloody stool, etc.

When I was about 20, my GP ran some blood work and then sent me to a GI. I was told everything was fine after a colonoscopy was done. Fast forward about 2 years - I am living in the UK, working and going to school. My symptoms are horrible. I go to the GI doctor in the UK, they do scopes and a test and I am told I have Crohn's.

I am given prednisone and told to maintain a healthy lifestyle. I gain about 60 pounds and my weight fluctuates out of control.

I come back to the states in 04 and promptly am referred to a new GI doctor in Chicago. This is where it gets scary.

The GI doctor does a scope, diagnoses me with microscopic colitis/crohn's and ulcerative esophagitis. Over the next 2.5 years, I am in and out of his office, on and off meds. I have been on prednisone, asacaol, entecort, immodium, methotrexate, immuran, 6mp, EVERYTHING YOU CAN THINK OF. The immunosuppresants do NOT help and cause me to lose my hair and get nauseous all the time. I miss work all the time, I am sick from all the diarhea (sp) and cramping and it sucks.

So then another crohnie at my work who is in remission refers to this GI in the suburbs of Chicago. I go see her in May 2007. She says that methotrexate, immuran, 6 mp, etc are very powerful drugs and that I shouldn't have been on them so long. She puts me on Remicade, every 6 weeks.

The remicade helps a bit, more than the other drugs but I still have symptoms ALL THE TIME. I have a very limited food source and it's hard for me to find things to eat. When I had a severe flareup a few weeks ago, she prescribed entecort. The remicade has caused me to gain more weight, 5 years ago I was at 122, now I am at 200 pounds. ICK.

So ---- what do you do when no medicines work????

 

[D Bergy]

I would consider low dose naltrexone (LDN). Kev and myself are doing well on it. I have no symptoms at all.

It is not an immune suppressant, but an immune regulator. It may boost the immune system to something near normal.

There is plenty of anecdotal evidence of improvement, and one preliminary study with good results. The best part is there is no serious side effects, and it is safe.

http://www.lowdosenaltrexone.org/

http://health.groups.yahoo.com/group/lowdosenaltrexone/

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&list_uids=17222320

http://ldn.proboards3.com/index.cgi

There is a doctor in the Chicago area that is very familier with using LDN for autoimmune disease. If you end up back in Chicago you may want to talk to him.

http://contemporarymedicine.net/index.php?md=13

Dan

 

[elp888]

i wish i could say something to make you feel better...

... but would it help? I can say is that here in Holland is someone (me) who sympathizes with you. i hope you have some friends and family to help you through the rough times and moments of doubt/frustration/pain; distraction works for me.

my 'crohns' life is very different from yours, but right now things are not good. i haven't eaten anythingin 3 weeks, and will be continued to be fed intravenously. this will continue for at least 8 more weeks. my mind has such a hard time dealing with this fact... is it even possible? i love food, i have appetite, but because they want my bowels not to work... it's just too abstract.

sorry, didn't mean to talk about myself, just wanted to let you know i feel for you and hope you'll feel a bit better soon!

take care
e.

 

[doglover11]

LDN is interesting. Can you use it with remicade?

 

[Kev]

I dunno if one could use it with remicade or humira... so if you are on remicade, I would strongly suggest you continue with remicade.. coming off it then getting back on it is a risky proposition. My understanding of the LDN method is that it resets the immune system; so it would be pointless to attempt it while taking any immuno suppressors. for example, in my case, I had to taper off pred and stay off it BEFORE starting LDN. And LDN isn't guarranteed to work. It does have relatively high success rate (but only one trial has been completed) AND little/no side effects of any severity. Those are two of the major reasons I decided to pursue it... Keep in mind that I had become toxic on AZA/Imuran, and my remaining options were pretty scary... and I had other, personal BUT valid reasons for playing guinea pig... and the whole Remicade off again/ on again issue didn't apply to me. I simply can't afford remicade as a treatment.

 

[Sojourn]

How long have been on Remicade? It may take a little while to take full-effect.

 

[D Bergy]

LDN is not compatible with any immune suppressants. I would continue with the Remicade for what ever reasonable time frame in which it should start working. At least you know if it can help you or not.

Dan

 

[doglover11]

Thanks for all the replies. I have been on Remicade for a year. It helps minimally. Symptoms persist all day. Stress is a huge initiator.

I called my doc to today about LDN and they will not prescribe it, even I do go off Remicade. SIGH.....tried almost everything!

 

[D Bergy]

My doctor would not prescribe it either, so I just went to a doctor who is familiar with LDN and he prescribed it. A doctor may not want to prescribe it for reasons of there own, but that does not mean it can't help you.

If you decide you would like to try it, you can get a prescription without too much difficulty.

Dan