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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/14/2008 11:26 AM (GMT -7)   
I have been having problems for months on end. I had a severe kidney infection & I never seemed to heal or it threw my body into crazy mode or something. They couldn't find anything wrong, all kinds of tests, CT scans, MRI, etc. I had a hemoccult test that showed I had blood in my stool, when I found this out, I began to pay attention & noticed the blood myself. Since then I had an EGD/colonoscopy that showed focal active colitis in all biopsies from the colonoscopy. I was told it would heal with azulfidine treatment for a month. I have now been taking it for a couple months & still losing weight (45 lbs since June). Lately I have been so sick. It has went from no diarrhea to cramps constantly & not liquid but very very soft stool with lots of yellow jelly-like mucous. I had to change some of my meds because they weren't digesting. Food is coming out in my stool, too, not just corn, but all different kinds of foods. I have been having a lot of bloating & gas & cramping lately & I have been going so many times a day. And I also have the feeling like I have to constantly go, but nothing comes out. I am afraid I am going to get 'roids or something.

Anyway, I have been having A LOT of dizziness & times where everything goes black. I am worried about this & am scared to drive or do anything physical because of it. I am taking liquid vitamins & trying to get all the nutrients I need. The osteo I see for my hypermobility-joint issue seems to think it's crohn's. I didn't think I had an IBD & I am confused. What is wrong with me? Am I ever going to feel better? I feel like I have had the flu for a while now.... When should I worry about all this? When do you decide it's time to go to the ER?

LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 1/14/2008 11:33 AM (GMT -7)   

Hi,and welcome,you will find support here. I'm assuming that a doctor has done lab work on you,I'm thinking you may also be anemic,when I was first diagnosed,I was very anemic,and as soon as I was put on proper meds,I got better,but it does need to be corrected.If you are dizzy,please don't drive!!! Do you have help and support??

 

Keep us posted,feel better :-)


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/14/2008 1:16 PM (GMT -7)   
I don't want to drive, but I have to work to pay my bills since my husband is laid off. I have no choice. I try to be careful, but it does worry me.

When I had my blood tests done, it was back in July & I was not anemic then. I am not sure about now since I have not had any new tests since the colonoscopy/egd in October.

This morning I had a hard time going. I kept feeling like I had to go, but it only came out like clay-consistency & it just seemed like very little, to be honest. Should I be worried about this?

The thing is, my doctor tries to keep the costs down for me since I have no insurance. I did go ahead & file for Medicaid, but I still don't have the determination on that. I have not seen a gastro, only the general surgeon that did the scopes. I am just worried that things are getting worse....

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/14/2008 1:31 PM (GMT -7)   
Hukelberrie, I just wish I could wave a magic wand and make you feel better. The only thing I can offer is cyberhugs. You helped me out by writing when we both were down a week or so ago.

I don't know if you've tried this (because, well I've tried about everything too...), but low residue diets do help. It may not be the most appetizing, but it does help slow the peristalsis down (I have similar issues). Basically I just ate baby food, stayed away from anything with fiber (still can't eat oatmeal right now...but I'm up to brown rice). It helps to use Ensure or Boost as an inbetween. When you get better, add more solid foods slowly. (I've had the mucus problem before, it's from the peristalsis moving to fast, and body produces mucus as there really is nothing else in there but bile)

My GI also has me on bentyl to slow things down. (I can't really take immodium anymore as I almost pass out...I think it messes with the electrolyte balance).

And saddest to say, it takes time....sometimes a lot of time. I've been out of work since Feb 07(money's getting hard here too). Just when I think I'm getting better, something acts up and kicks me in the bum (fissure this time).

Again, cyberhugs and love....I will be thinking of you.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/14/2008 3:53 PM (GMT -7)   
Thanks so much Undone, it is nice to get the support. My husband really does try to take care of me, but really we just don't know what to do at this point. I have tried to change foods, but man, I can't find much that feels okay after eating it. I am scared of losing more weight because my brother just died less than a month ago (pancreatic cancer) & my parents are freaked about the weight thing. I know it's not

Thing is, I was just told of this crohn's thing somewhat in passing & didn't get a whole lot of info from the dr. about it to even know or understand what I have to do or how to handle this. I hate to whine, but I am just feeling so sick. And I just have to do something. I did email a gastro who said to stay away from spicy, caffeinated, and lactose foods. Then I have seen online where they say if you have crohn's or colitis then you should limit fiber. No seeds. What else is left to eat? The way I have been losing, I am worried if I stick to that kind of diet I will lose tons more. I went from a size 12 to a size 3. Scared to lose more....

What is a low residue diet? What baby foods worked for you? What tastes good? My husband bought some lactose free ice cream & made me an ensure shake today. Man, not long after I started to get the gurgling & bloating & I feel horrid again! I am afraid to go to work & feel like this. Or worse... pass out. I thought oatmeal & rice were okay & bland enough to eat. I am so confused. I am worried about getting all the vitamins & nutrients I need while still liking what I eat & NOT losing weight.

BTW, what is peristalsis? "body produces mucus as there really is nothing else in there but bile..."? What does that mean? I had bile in my stomach when I had my EGD, I was told that was normal. Is that true? I am so new to this all.... To be perfectly honest, I think I have been trying to deny I was even having a GI issue the whole time my brother was sick. I knew something wasn't right, but I thought I just had a muscle issue (I ended up having a rib issue, but that's a whole other story). I thought losing weight was just stress of my brother dying & trying to take care of him & all. When he passed, I realized when things calmed down how much pain & problems I have had going on. It's not from stress, so I need to fix it. I can't live like this.

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/14/2008 5:07 PM (GMT -7)   
I'm so sorry to hear all you're going through. I too lost someone close to me last month (my mother) and I know the stress really played havoc with my symptoms -I went from almost no symptoms (remicade has been a life saver for me) to passing blood again. Perhaps the doctor who gave you the last prescription for your active colitis could try a short round of the dreaded prednisone? It usually works very quickly on stopping the symptoms of IBD. The side effects suck though. If that works, perhaps another less harsh drug can be found to alleviate your symptoms. The reason I thought of prednisone is because it's usually successful and cheap to buy. I know it had to try many drugs -some very expensive - before they found the one's that worked for me. I have insurance so it was no big deal, but in your case, it would be very hard to experiment until medicade kicks in.

Good luck,

Bev

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/14/2008 5:35 PM (GMT -7)   
Hukleberrie,
Gerber baby foods are a good choice. They have good nutrients, but don't have the roughage that can make pain worse. I like the baby rice cereal...if you want to stay away from milk, you can use soy or even water, and add a sweetner to taste. The Ensure and other liquid supplementation, have the nutrients (but don't taste so good, depending on flavor...they have a long shelf life...sit a room temp...can't have everything.) These will give you enough calories, just make sure to graze, and take what your body needs. Don't just limit yourself to 3 meals a day. If you are hungry...eat.

Oh, peristalsis is the smooth muscle movement that propels the food bolus through your digestive tract. For some people, it is very slow(constipation) for others, it is very fast, and the muscles contract fast, and hence give the diarrhea. Bile is used to help digest and come in at the start of the small intestine. But when there is no food, and just movement, that's all there is, and so the body does not rub against itself and digest itself, it produces mucus (usually helps the food bolus to move along). Caffeine can increase this movement, hence why it is considered good to stay away from it while not feeling well. I hope this helps...Anatomy and physiology were a long time ago...did well in it though...

I agree with bentwistle...prednisone is usually inexpensive...and though can have nasty effects, can be a Godsend. (That is why I also mentioned bentyl a/k/a dicyclomine...it is inexpenisive and can help.)

I am glad your spouse is there for you. I don't know what I would do without my DH. Not sure what I did in this life to deserve such a great man. I am glad there is someone to share your loss and help wipe your tears...again my thoughts are with you...take care...

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/14/2008 5:41 PM (GMT -7)   
I am wondering about something.... Now that you bring up the prednisone, I WAS put on a short run of it, to get rid of water in my ear. I was only on it for like 6 days or something, I don't remember any side effects really. I wonder if that is why they thought my colitis had been "treated" (from the biopsy results) since I had taken that prednisone before I had my colonoscopy....??

So I should mention maybe prednisone when I see the doc next. I will remember that.

I am having so much bloating & cramping & dizziness & fatigue.... palpitations.... wonder if it's all related.... I guess I have to wait until I can get in to see my primary care phys. I have another week from tomorrow until I even see her on this issue, we never discussed the option of crohn's because I really thought the azulfidine was supposed to work & it was some acute form or something. It was when I saw my osteo (for the rib issue) who was wondering about the continued weight loss & said he thinks it's an ibd, crohn's he thought. And he just handed me my script (with 5 refills) and that was it. And it isn't working. I am continuing to feel worse. I notified my pcp, and I thought I would have to run into an appt, based on the way I feel, but they didn't even suggest an appt., said, yup the weight loss & pills not digesting is probably from your "new diagnosis" (what? Is it for sure I have CD? The osteo just THOUGHT?....) and left it at that. No other instructions or suggestions or anything. "Is there anything else you need?" Yeah, I need to feel better!!!

So if anyone has ANY suggestions, please post. I appreciate all the input & support because I feel like I am falling apart.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/14/2008 5:47 PM (GMT -7)   
Thanks undone, for the info. I am learning so much. Not that I ever wanted to know this stuff, I am so shy, I have a REALLY hard time talking to my doc about this. When I first got sick, she got so angry with me when she realized I had been skating the issue of the PAP smear due to modesty issues. Needless to say, the colonoscopy was difficult as well, thank goodness for those drugs!

My husband has been great, although I fear he is very tired of all this also. I worry he won't be able to deal with me whining much longer. Thanks for the info. Need to lie down, things are spinning again...

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/14/2008 6:14 PM (GMT -7)   
I think that's what makes this forum so great...I have issues too. I had to get the ONE issue that I had hang ups about...okay don't really like talking face to face with my doc about my poo habits...And this is from someone who has assisted in well over 1500 autopsies...(okay, taking stomach contents was about the only thing that made me a bit squemish...not even the bugs really bothered me...) When I was in my dorm in college (we had 1 bathroom per 1/2 floor or about 20 ladies), I would wait till empty to go to the bathroom. I am still a home user, and will use public restrooms only when I am about to explode, I will hold and hold if need be 'till I get home.

Go ahead and complain here, that's why it helps so much. Allow yourself to complain as much as you want, 'cause frankly, in my opinion, this disease sucks, and sometimes hurts so bad. I would not wish this on anybody...maybe a dictator or two...but maybe not even then. Go ahead and cry too, it's good for you once in a while. (Part of that whole stages of acceptance...alas, you have 2 awesomely bad things to deal with at the moment.)

And I hope you are eating...hope you can stomach some ensure...worried about you...should call you doctor first thing in the morning. Being dizzy is NOT a good thing...Cyberhugs...

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/14/2008 6:34 PM (GMT -7)   
Huckleberrie,
Prednisone is very inexpensive, will probably help you immensly and some people have almost no day to day side effects at low to moderate doses. Do your research though because other people do have short term side effects and the long term side effects can be bad if you stay on high doses for a long time.
If you get okayed for medicaid try to get in to see a Rhuemotologist as well as a gastroenterologist. The rhuemies can really help if this is chrone's. Some of the new biologics work really well for chrones and for the seemingly unrelated systemic problems.
By the way how long have you been on the azulfide-some of these drugs take two months to work.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/15/2008 4:51 AM (GMT -7)   
I can't believe that they would put me on azulfidine for 1 month if it won't work until after 2 months! I took the Azulfidine the beginning of November, then after the first month I was still having problems so they put me back on it. I have been taking it ever since. Still having problems. Funny thing is, during the first month, I don't think I was having too much trouble, but my brother was so sick, I wasn't paying a whole lot of attention to how I was feeling. I think I was ignoring my health problems & then they blew up in my face! It started with my medications showing up in my stool, blood in my stool again (not a lot) and then the cramps & constant urge to have to go.

Thanks for all the info. It really does help. It's comforting to know all your experience with this horrible disease (I still keep hoping I don't have it) will help me figure out what to do.... I never thought about seeing a rhuemotologist.... That's funny, the one surgeon I saw thought I had arthritis in my rib & I thought he was nuts. How does a rhuemotologist help if this is crohn's? Can my rib pain be related to CD?

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/15/2008 9:58 AM (GMT -7)   
I also forgot to mention, I have been really shaky... Is this normal with CD, too?I barely try to do ANY kind of exertion & my heart races & I feel weird & dizzy. Should I worry?

I finally have been able to keep my weight stable for the last few days with tons of eating & liquid vitamins & ensure.... : )

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 1/15/2008 11:54 AM (GMT -7)   
Could be some of your meds. Glad to hear about the eating though. Did you call your doctor yet? I have been thinking about you, and not to sound to presumptuous, but I am worried about you...praying for you...

As for the denial, I did that too for a long time. I still am angry a lot at my body, but not at the powers that be. I just blame myself more, what did I do wrong, what have I done to deserve this...all that self blame stuff yet. I'm working my way toward acceptance, but I haven't just yet (cause I thought I was getting better, had brown rice and veggies, and now, today, I'm miserable....).

It will be ten years in July since my diagnosis on Crohn's. I went into remission for 3 years at one point...so don't lose hope....there is always hope...

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/15/2008 2:51 PM (GMT -7)   
I thought it was the meds, too, until I realized that the Norco they had me on was not digesting & I knew it couldn't be that.... And then the Azulfidine doesnt have that as a symptom, I don't think. Besides, I was still having the palps & heaviness in the chest even while I wasn't taking the Azulfidine. But maybe that was just stress?....

I haven't called my doc about it because I see her Tuesday & I don't want to bug her.

Thanks so much for your support. I keep hoping someone on this forum will tell me that they don't think it's CD....

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/15/2008 4:59 PM (GMT -7)   
I was just wondering if you've been checked for anemia as well? Since you've been passing blood, it's quite possible your faintness is directly related. Your electolytes might be totally out of whack too - causing the palpitations. I'm of course only guessing, as I'm not a doctor. I'm anxious to hear what a doctor says. Don't wait to see her Tuesday if you keep having these symptoms. Go to the emergency, or if you think you can get an earlier appointment -reschedule. I find the doctor's get mad at you if you don't let them know things aren't going well! They will usually say " why didn't you tell me these things were going on". If it is Crohn's, the symptoms can often be controlled so that you can lead an active life.

Please keep us updated. I'm worried for you.

Bev

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/15/2008 5:41 PM (GMT -7)   
I'm back to denial, I think, because it can't be Crohn's. I have been wandering around this site & the similarities between some of the OTHER health issues people have & my own is crazy. Is this stuff all linked? But really, I just got an email from a friend who still thinks I have some kind of colitis, probably infectious & it will heal soon. I am sure she's right. I must just be worried about all this too much.

I was checked for anemia back in July when all this started. I haven't had any blood work since then. Thing is, I have had the palpitations since this all began & I went to urgent care with this problem. I have tachycardia, where my pulse has been over 100 every time I go. They did an EKG on me, and said if I had insurance they would have me on a holter monitor & have an echocardiogram done. My blood pressure has been good most of the time (I had high blood pressure twice sine July - I think from pain & stress) usually it is 110/80, but lately it's going down, down. It was 84/58 last time I was at the osteos. But low isn't bad, so no biggie. The nurse just thought I was sleepy, lol. So I know it's not my blood pressure. I just thought maybe the dizziness & stuff is from the CD, but I don't think I have it anyway. I only went once today. Besides the blood is in very small amounts... maybe it's just red pieces of my newest pill, it has a red coating. I am sure that's probably what it is, I think.... So, they already checked for anemia months ago so I am sure it's not that.

I have been calling her (my pcp) a lot lately, and I am sure she realizes I don't feel well. I called the other day & left a message for the nurse that I wasn't feeling good & wanted to see if I could get an earlier appt, she gave me the one on Friday, but I have an osteo appt. that morning & I have been waiting for weeks to get that rib put back in place. The pain is difficult to handle on a daily basis, so I need to get that fixed first. Maybe I will feel better when it's fixed. Anyway, I have been bugging them once a week for a while. In fact, when I called about the pills not digesting, I thought I would get a response like please make an appt. or something to that effect. She just said, "Yeah it's probably from the IBD. Is there anything else you want?" Yeah, I want to get better. I really like her too & I have been seeing her for a while. I think because the surgeon who did my colonoscopy thought I had colitis that would clear up, she thought that too. But finally I called & just made an appt. Then I called later to see if I could get it sooner, they set me up for this Friday, but I had to change it because of the conflict. So I go in on Tuesday. I am sure since I have been feeling like this for so long that it's no big deal & I will be fine until Tuesday. I did go to AllExperts.com & asked the gastro about the pills & such & he said "That is very appalling to hear of your physician's attitude towards your care. Your situation is NOT normal and needs proper medical attention." But he didn't seem to say it was a rush or anything....

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/15/2008 6:40 PM (GMT -7)   
huckleberrie,
I don't want to be a party pooper (so to speak) but it does sound like you are in denial about your condition, whatever it is. You need to see a GI and get a proper diagnosis...I hope that your Medicaid comes thru so you can get some proper medical treatment. I've got my fingers crossed for you!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/15/2008 7:00 PM (GMT -7)   
I know. I know. I keep hoping there's nothing going on, but I know something is. I just PRAY it's NOT CD. I thought UC sounded bad, but CD sounds so much worse. I see my doc Tuesday, so I will know more then. I hope to get a referral to a gastro at that appt. I need to know what's going on soon. I will post Friday after I talk to my osteo. I am sure he will ask how I am doing, he's the one who believes I have Crohn's. Maybe I will get some info. He thinks something is going on with my small intestine. Not absorbing. (Malabsorbtion is what the surgeon said, too, but he was thinking acute colitis. How do they check the small intestine?

Please post if you think it's not CD. I would love to hear everyone's thoughts.

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/15/2008 7:04 PM (GMT -7)   
Blood results from July are way too old - the results have probably changed dramatically. I have a autoimmune blood disorder that developed mysteriously this past summer (and luckely for me seems to just as mysteriously disappearing) and my doctor insisted on weekly blood tests as things change in that short a period sometimes. Denial won't make it go away - it will just make it that much harder to get under control (as more damage may be done). I don't mean to scare you, but as you already know from your reading, crohn's can require surgical intervention if it gets too far advanced. The medications help to reduce the damage being done to the lining of your digestive tract. Many of us do quite well on our medications.
I hope it's not crohn's that you have, but a lot of the symptoms you're describing and the doctor's finding of colitis (meaning inflammation of the colon) suggest it very well might be. Listen to your symptoms - the gastro was right when he said that your situation is not normal and requires proper medical attention. Palpatations, dizziness, low blood pressure,heaviness in chest, blood in stool, diarrhea, racing heartbeat, cramps, constant urge to go, dramatic weight loss, undigested food passing in your stool, and feeling wierd and shaky ARE NOT NORMAL. Please stop denying something is wrong and follow-up with your doctor. It sounds like she really wants to help.

I hope you get some answers soon,

Bev

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/16/2008 4:49 AM (GMT -7)   
Bev~ Thanks for your reply. My doc is off today, and I am sure this isn't urgent. I see her Tuesday, so I will know more then. Besides I see the osteo on Friday & I will mention to him. I have already told my doc that I feel crappy, but I can't get in any sooner so I will just have to wait.

Anyway, I did have another question... Please let me know if anyone has problems with their period with CD. I had problems the last month (really really heavy—heavier than I have ever had it along with 1 week early) and now this month it's on time but I only had it for about 24 hours & it stopped. I am hoping it's nothing, but I am starting to worry a bit...

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/16/2008 4:33 PM (GMT -7)   
Let your doctor know about your period woes for sure too when you see her Tuesday. Ensure she orders up some blood tests. It sounds as if things are somewhat out of whack on a number of fronts with you. Hang in there!!!! Hopefully some answers will be coming soon. It's really scary not knowing what's going on. Once I know what's causing problems with me -even when they're serious, I feel so much better, because I then have some control. I can research the problem and feel that I can be an active participant in my care. My biggest fear with medical issues is not knowing why things are going wrong.

Good luck, and let us know if you get any more info on Tuesday.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/16/2008 6:41 PM (GMT -7)   
You said your blood preasure had gone done then said no biggie. Well the low blood preasure isn't normal either and it will make you shaky, dizzy etc and you could pass out or have seizures.

By the way I had some of the same symptoms low blood preasure shakiness dizzynes before they diagnosed me with an autoimune disease. It went away when treatment started.
So see the docs tell them everything even what you think isn't related and let them help you decide what to do.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 1/16/2008 8:52 PM (GMT -7)   
I went to urgent care today. I was so sick this morning, I couldn't function & I was scared. I have a strep throat infection & they said that can mess with your gi tract since it's all connected. They put me on an iv with steroids & anti nausea meds (I kept gagging, almost vomitting everything). I don't even want to eat. Darned if you do, darned if you don't. I feel a little better, not as shaky, but I know it's just a quick fix. I didn't realize I was dehydrated even. I slept all day basically & hope tomorrow is better — I have to work. : (

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 1/17/2008 6:37 AM (GMT -7)   
huckelberrie...you are in my prayers, too. I wasn't clear...do you have anemia? That alone can cause heart palpitations. With your periods getting heavier AND the possibility of CD, it seems anemia could be an issue. Be sure to ask for in-depth blood work when you see your doc.

Consider taking a potent probiotic--it's a good idea for anyone with intestinal issues. I'm assuming you were put on an antibiotic for the strep throat, so there's another reason to take it. I hope you feel much better today!...:-)
EMom
Mother to 15 year old boy diagnosed in June, 2007.
Currently taking Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September.

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