Scared Im going to die

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 7/12/2009 10:39 PM (GMT -7)   
First and foremost I would like to ask everyone here to please rate the following medications on a scale from 1-10. 1 being mild and 10 being very hard on the body.
 
Fish oil
Remicade
Humira
Imuran
Cmyzia
LDN
Prednisone
Entocort
Asacol
Blank
 
I was just recently put on Imuran I feel like Im walking death. Ive been on tit for 1 month and feel worse. Ive seen several prople die from crohns dieases over the past 6 years as a bedside patient care giver. These drugs dont leave you with any kind of immune system.
 
Swine flu, Chicken pox, Sepsis, its horrible. Im going to catch this crap one day. I need to get out of health care but cant afford it. Im a nervous wreck. LDN was working so well for me but I couldnt sleep. I went off of it and flared big time./;
 
 
 
30yo male
Currently on LDN for Crohn's with good results
 
63cm resection in '08, exausted all meds except pred :)
Avascular necrosis of both hips, Degenerative Disk disease with 5 herniated disk, Asthma, etc etc....


camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 7/13/2009 2:04 AM (GMT -7)   

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...


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 7/13/2009 5:07 AM (GMT -7)   
What did the people die from?
If LDN was working well except for sleep, could you take something for sleep like Melatonin or something else?
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg.
 
I live by faith and not by sight....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/13/2009 6:33 AM (GMT -7)   
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*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/13/2009 7:18 AM (GMT -7)   
RELAX! We are all gonna die someday. You are a h*ll of a lot more likely to be killed driving or riding in a car than from Crohn's disease. (Altho there've been a few days in years past when I thought I was gonna die and was afraid I wouldn't!!! *weak smile*)
 
AND - most important of all - keep in mind that in the health care setting you are seeing the most severe cases, just as in these forums you are seeing those w/somewhat more aggressive disease or who haven't found "the" med combo that works for them - you aren't meeting the thousands upon thousands of those who Crohn's is well-controlled or mild enough that they don't feel the need for these forums.

Imuran and Pentasa do the trick for me. I was in remission for 20 years after a resection and have been in remission or symptomatic remission for most all of the last 11 years.

It DOES take 3-6 months for Imuran to kick in and do its intended job and yep, usually you need pred or Entocort EC to help it out those first few weeks or months.

Not everyone gets a good response to Pentasa, thank goodness my Crohn's is quite responsive to it as long as the Pentasa has the Imuran to keep it on the straight and narrow. But it takes the partnership of the two to really keep the Crohn's at bay.

If you did well w/the Naltrexone maybe you are one whose Crohn's would respond well to antibiotics? My Crohn's does respond well to antibiotics, thank goodness. Maybe Xalatan would help you out w/your Crohn's??

I don't know about starting w/the mildest meds but it is easy to start w/the strongest/most likely to cause problems meds for your list.

Prednisone
Entocort
Remicade
Cymzia
Humira

Unfortunately, prednisone is the one to most likely bring the fastest relief response. *sigh* Ah, pred, the drug we love to hate - or hate to love?
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/13/2009 8:29:42 AM (GMT-6)


heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 7/13/2009 10:22 AM (GMT -7)   
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!

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 7/13/2009 6:35 PM (GMT -7)   
Holy cow Redspot123! I certainly understand the fears and concerns of dealing with Crohn's . I'm sure everyone on here has had their share of them but I think people come to this site for hope, encouragement, and cyber hugs not examples of people who have died either directly or indirectly from Crohn's disease. Please use alittle discretion when sharing your thoughts. That only does more harm than good. Tony
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/13/2009 6:45 PM (GMT -7)   
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.


Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Post Edited (CrohnieToo) : 7/13/2009 7:52:26 PM (GMT-6)


Katzzz
Regular Member


Date Joined Jul 2009
Total Posts : 38
   Posted 7/13/2009 8:58 PM (GMT -7)   
Redspot
I'm so sorry you are going through a rough time I hope you begin to feel better real soon. I know nothing about meds.
The thought of anyone dieing over crohn disease is very sad although I'm sure there have been afew complicated cases just like in many others medical diseases too. I'm sure many have felt scared like yourself including me. Though I can't believe anyone wouldn't wish to live as long as they can especially pass 50's -60's. I'll be 50 soon. Be careful for what you wish for. I know we can be drained weak of the pain but we are much stronger then we think we are and this is the honest truth. Think of all the good things when you are down with so much pain because if you think of the lower spots you will go down futher and we all know this. No matter how bad we are feeling there is somene else feeling much worse so bring as much joy because It will make someone feel abit better through all there pain. Here a wishing you alot less pain and I truely do feel your pain.
Take care of you the best that you can.
Hugzzz,Kathy

Faizi
Regular Member


Date Joined Oct 2006
Total Posts : 451
   Posted 7/13/2009 10:07 PM (GMT -7)   
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.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/13/2009 11:47 PM (GMT -7)   
It's nice to see you again, Faizi, but I'm so sorry you and your daughter are having such a horrible time. My heart goes out to you.

Yellowfin, I think that many of us find that this forum is the one safe place that we can express our doubts, fears and difficulties, without the judgement and lack of understanding that many of us get from our peers in the "real" world. I think it would be very sad if members felt that they had to censor their posts for fear of depressing others. I think Redspot is genuinely worried, and is in genuine need of support and reassurance. Let's give that support and reassurance and not judge, ok?

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 7/14/2009 12:58 AM (GMT -7)   
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.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/14/2009 4:12 AM (GMT -7)   
I think that at one time or another we have all wondered how long we have to live with this DD. I just try and live each day to hte fullest and try to fullfill my bucket list. In the mean time I take my meds and eat healthy and try to exercise everyday. Like Nanners said, go to your doctor and see if they can help or find a support group. This is my support group.

Good luck!!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/14/2009 9:43 AM (GMT -7)   
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)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Katzzz
Regular Member


Date Joined Jul 2009
Total Posts : 38
   Posted 7/14/2009 12:04 PM (GMT -7)   
Faizi

I'm so sorry to hear about your daughter she is so young and having 15 surgeries is alot. How long has she had this nasty disease? Has the Dr. talked about her maybe having to have a bag put on her side? I only have one 3 inch spot that is infected and just the pain from this I can not imagine all she is suffering through. I do think if I was in that condition it would be time to think of having a bag. My uncle had cancer in his intestines and he was a really sick man he did almost died but they took everything he had the illeostomy surg/bag and he has now had a bag for over 18 years now. This is just another thing we have to worry about with having crohns/cancer.
I understand that surgery is not a cure but some times you have no choice in removing the infected areas because if you let them go they can get much worse now this is just my feelings 'that I would opt for surgery because I do not want to take a chance to get cancer in the infected area'. I pretty sure I'm headed for my first surgery soon and hopefully no more. I would much rather bring good news to anyone but darn it is not that easy with this crohn disease. There are alot of things to think about having or not having surgery.
I hope that things turn around soon for your daughter and that she has alot less pain and that the bleeding stops,Pain free would be my/our best hope. Please keep us updated.
I'm so sorry.
Hugzzz,Kathy

yellowfin43
Regular Member


Date Joined Aug 2008
Total Posts : 305
   Posted 7/14/2009 2:19 PM (GMT -7)   
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.
Crohns 30 years. Ileostomy for 15 years. Symptom free for 14 years until 10 months ago. Was on Remicade but just recently switched to Humira because remicade stopped working, B-12 injections and iron.
God Bless. Tony


Katzzz
Regular Member


Date Joined Jul 2009
Total Posts : 38
   Posted 7/14/2009 3:43 PM (GMT -7)   
I'm so sorry if I have said anything that may have scared anyone I really didn't mean to. I was just speaking about different issues that can arrise through crohns disease. I thought everyone should be aware of all the facts known through crohn disease because I don't know everything.
I really don't know what I can express or not express here.
I'm sure at a loss and confused really as what anyone can discuss with there crohns illness.
Here a wishing everyone the best.
Help!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/14/2009 4:33 PM (GMT -7)   
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)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/14/2009 4:34 PM (GMT -7)   
When push comes to shove, it's the moderators and the site owner who determine what you can and can't post on this forum. I think it is best if you let them decide what is appropriate, instead of publicly condemning a poster here on the forums.

If you have doubts about whether a topic is appropriate or not, I think the best thing would be to send the site owner an alert. You can do this by clicking on the yellow ! that appears in the right-hand corner above every post. Peter owns this site; he makes the rules; he has the right to have the ultimate say on whether a post is ok or not.

If regular members start to openly criticise posts as being overly depressing, I worry that we will begin to drive people away from our forum, and we will make people start to think (as we've seen in Katzzz's post, above) that they can't be open and honest on this forum.

I say again, this is a safe place. For many of us, this is the ONLY place where we've felt safe enough to say what we're really thinking and feeling and fearing. Please, everyone, let's not ruin that by starting to critique posts.

For the people who are worried about this thread being unnecessarily depressing, I respectfully suggest that the title of this thread ("Scared I'm Going to Die") gave you fair warning of what the content might be, and ample opportunity to avoid it.

Katzzz, you are safe here. Please do tell us how you feel.

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 7/14/2009 5:38 PM (GMT -7)   
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 :-)

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17098
   Posted 7/14/2009 5:51 PM (GMT -7)   
Faizi, have you taken your daughter to a teaching hospital?  I have had Crohn's since I was in my 20's and I'm now 62  years old.  I was fortunate to be living in Cleveland, Ohio at the time and saw doctors at the Cleveland Clinic.  My Crohn's was centered in my colon and a little in the ileum.  The disease got out of control, bloody diarrhea for years, running to the bathroom about 25 times a day.  It was horrible.  I developed fistulas too so I was a mess.  I went to the Cleveland Clinic and it was decided to take out my colon, a small part of my ileum, and my rectum.  I had that surgery done nearly 20 years ago and it was the best thing I did for myself.  The Crohn's hasn't been a big problem since I had the surgery.
 
It's something to think about.  The appliance hasn't prevented me from doing anything and I have lived a full and enjoyable life since the surgery.  So, if by chance the colon is where the bulk of your daughter's problem lies, I'd keep an open mind about surgery.
 
Redspot, if I were you, I'd sit down with my doctor and discuss my concerns about the medication and your fears.  Also, speaking with your pharmacist about medications could help.  They know an awful lot about these medications and also how much they are filling them.  You could get some help there too.  Lastly, try to calm down.  Anxiety about this won't help one bit.  I personally have never heard of anyone dying of Crohn's.  I hope you get some answers that will give you peace of mind. 
 
Sherrine
 
 
 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 7/14/2009 6:56:45 PM (GMT-6)


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1497
   Posted 7/14/2009 6:30 PM (GMT -7)   
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.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/15/2009 1:52 AM (GMT -7)   
Redspot: I would suggest hopping back on LDN - try taking less: lke 3mg, and working up to the dose over a month or two. that worked for me. Also, I had sleep problems crop up for a couple months after the main sleep problems ended if I so much as LOOKED at a drink. Like even half a beer would return the sleep issues. ALso, for some reason I seem to have also had an easier time with the LDN cream, rather than pills. No idea why. I totally understand the sleep problems, but I can tell you that for me they went away when I dropped the dose and worked up.
Also, you can take it during the day, did you try that? HUGS!!


also: my heart goes out to you Faizi. You'll be in my prayers.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/15/2009 2:57:05 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/15/2009 8:15 PM (GMT -7)   
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.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


camjames
Regular Member


Date Joined May 2006
Total Posts : 229
   Posted 7/16/2009 1:45 AM (GMT -7)   
I agree with MMMNAVY...
 
Redspot, if your utterly hating the Imuran...methotrexate shots (MTX), which you can learn to give yourself once weekly, might be a good alternative.
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