Scared Im going to die

Alright so your flaring and having med troubles...it can be very scary, been through stuff recently myself. I don't want to rate you meds exactly, but certainly Fish Oil, Asacol/Pentasa, are much more innocent meds than the immunomodulating meds listed. I'd say long term, high dosing of Pred would be the worst on the body though.

To bring some hope,

1) Imuran takes at least 3 months to notice any effects

2) I've been on Imuran, I felt alot worse, major indigestion (I feel alright on Remicade, methotrexate etc)

3) Not sure if your doctor is treating you too well; most ppl who flare and get switched to a drug like Imuran also go on a Prednisone taper, to provide the more immediate effects needed if things are severe enough...It would probably help you with your current outlook on life

4) Even by partially following the SCD diet, I've gained some health when meds weren't working out at moment

Question: did most of your patients die of secondary conditions while having crohn's? Most reading materials say crohn's does not majorly affect life span, but could induce death during troubling times due to a ruptured abscess causing infection for example...

It sounds like you are developing some health anxiety. I think maybe you might need to get in and talk to your family doctor about something to help calm your fears. If you look in our resources thread, Ivy6 has a post about medications. You might want to check that out too.

Good luck,
Gail*Nanners*

I haven't tried most of those so I can't rate them. I've used pred to get flares under control and currently am taking it, along with colazal as my maintenance med. I've used fish oil but can't say whether it helped or not. I also worry about going on stronger stuff and regretting it later. I try to weigh my need for quality of life now against the future possibilities. Also I watch for any meds that might be affecting my moods/mental state as I did have a bad depression once on pred that went away once I stopped it. I have an active enough imagination without chemicals pushing me further into anxiety. And stress seems to be a big factor in my flareups.

I hope you will be safe in the meantime, and obviously you must know all there is to know about what precautions you can take to avoid illness. Hopefully you will find something with less risks soon. For me, being a religious person, I figure God will be in control of what happens and that lessens my fears. I also look into the future wondering how old I really want to live to be...maybe 50 or 60 years of dealing with cd will be too much and I'll be ready to go much sooner. I guess we need to enjoy life while we have it, because even healthy people have no guarantees.

Take care!

Just a word about Imuran here. 1] we don't take as high a dose w/Crohn's as was needed for transplant patients. 2] this lower dose for Crohn's does NOT usually put us at any more risk for colds, flus, etc. (I've had FEWER colds, flus, etc. since Imuran and I have COPD!) 3] keep in mind that our gut's immune system is in over-drive attacking itself, the low dose of Imuran tampers down that over activity 4] regular blood draws are done to monitor your liver's response to the Imuran 5] there is a Prometheus test, I've forgotten which now, that gives a good indication of when your dosage has reached therapeutic level w/o potential hepatotoxicity that should be run periodically the first year or so. I think it was once a month for 3 months, then assuming all is going well, once every 3 months for 6 months and then every 6 months for a year - after that only needed w/weight gain or loss or dosage adjustment.

AND it seems I put the order of my list wrong for what you asked. I ranked what I consider the WORST drug first - prednisone. Then in descending order those I think might be less risky from reading about them.

I came close to taking Remicade at one time - I cancelled the afternoon before my first infusion. As mentioned I have COPD. They ran a clinical trial thinking Remicade might also be beneficial for treating COPD. I read that morning before my first scheduled infusion that it had been ended early. I called the company to find out why but they wouldn't say. That was enough to convince me NOT to try Remicade UNTIL we found out why it was ended early.

I think that my daughter is going to die. She is on Imuran now and has been for a couple of years. She is on fifty milligrams of Prednisone now and taking Humira. She has been on Humira ever since it was approved for Crohn's. She was on Remicade until it stopped working for her. She has been on everything else in three years, too. The Prednisone and Humira are doing nothing. She has bloody watery diarrhea about fifteen times a day. She has been in the hospital about twenty-five times in three years -- last time two weeks ago. She has had surgeries for fistulas fifteen times -- has two new fistulas now.

She is miserable. So sad because she is twenty one and wants to go to school but is not healthy enough to even be able to keep a job now. I feel at a complete loss. The disease is intractable and I believe that she is going to die from it. Nothing stops its most malicious and hateful symptoms.

I agree with Ivy6. I think it's actually pretty normal for us to have these feelings sometimes, especially right after being diagnosed. I know I did. I'm pretty sure one of the first posts here was asking how long do people usually live with Crohn's? As in are we going to die sooner. I was scared by the diagnosis. Thinking of my son and if I was going to be able to see him grow up, and see his children some day. I worked in health care before now staying home, and seeing so many worse case senarios can alter your view of things. It can be depressing, and scary.

I hadn't known a lot about Crohn's when I was told in the hospital that I had it. Sure I did some reading about IBD when I first started having symptoms some 10 years before that. But all I could remember at that moment of how awful of a disease I thought it was, and how I was happy the doctors at the time thought I just had IBS. So to hear it was Crohn's was a complete blow, and I had no idea what to expect. I actually don't think some here was too thrilled with my questions either, but I was just scared. I was looking for answers from people who understood. Not just my family who would just say I'm gonna be fine, because they wanted me to be.

Of course now I've learned a lot about Crohn's (and have gotten my health anxiety under control). Doesn't mean I don't still have fears about it. But it is nice to have a place where you can share them.

You know, Faizi, resection is not a cure. BUT there have been those who have had L-O-N-G remissions after resection.

How familiar are you, and your doctor, w/the location of her Crohn's disease? Is it in both the large and small intestine? Is it all up and down the small intestine? Is it confined to just one or two areas of the small intestine.

Believe it or not, the severity of the symptoms is not necessarily a true indicator of the severity of the disease. For 2 1/2 years I was nauseated 24 hours a day, 7 days a week. I was always bloated, sometimes more than others. I could bloat up like I was 11 months pregnant in a matter of hours. The pain was excruciating. Many is the time I just lay in bed and cried, "no more, God, PLEASE, no more!". Yet my Crohn's was confined to just one area and w/resection of that 18" of mid-ileum I was blessed w/a 20 year remission before my Crohn's returned.

I wish your daughter an effective treatment and pain relief. (((hugs)))

Dear Ivy6, I agree with you that all of us need to vent our fears. Ive done it, you've done it....we all have at some point and I think its great to have a place to do that where others understand your situation but to give examples of others who have died from their illness isn't necessary. If someone came to me and told me they had a tumor, the last thing I would do is tell them stories of all the people I know of that died from a tumor. I understand her fears and I am sympathetic because I have lived them myself but examples of those who didn't survive is unecessary and harmful to others on this site that may share her fears. I'm not talking about cencorship, I'm talking about common sense and courtesy.

Katzzz, those who don't want to read it don't have to. We all need some place to vent and this is meant to be the place that you can do so. Express your fears and we will do our best to allay them. Just bringing them out in the open can help. (((hugs)))

First of all,HUGS!!!! I do agree with Nanners,sounds like related anxiety which is very common. I am a RN,have been for 13 years,and have NEVER,EVER seen anybody die of Chrohns,and I work with Peds,and GI patients,as a matter of fact,I see many get better,and many not even get admitted anymore. We all have bad days,chrohns related ,or not. As far as meds,only my opinion,ofcoarse,Asacol is very easy on the body,been taking it for 10-12 yrs,Imuran is my miracle drug,been on it for like 5 yrs,before Imuran,I would gag every morning,it was horrible,Humira,I was on it for like 8 mths,developed drug induced lupus,I HATED that drug,but does work well for others.We have a teen that comes in every 8 weeks for Remicade,doing well....

Hang in there

Faizi,

Your post is incredibly moving and heart wrenching. All I can offer is prayers for your daughters health. I wish I could offer some advice or assistance of any kind. THere must be something that could be done for her current condition. I hope the advice for treatment options keep coming here. Please keep all informed here. No parent should feel compelled to write the first sentence of your post. May God be with you.

Tom.

One thing I noticed is that MTX (especially the shots) is not on your list. It has been the only thing that has worked for me, and I have done all, but LDN on your list with no help.
I am assuming you work hospice or something rather similiar? That is really emotional work, and can make you more sensitive to illness, and sometimes it is good just to have a convo about the issues that are involved in working in the health care field.
Please feel free to vent, and just know there is hope.

Faizi, my thoughts are with you and your daughter too.