TOTAL COLECTOMY POLL - PLEEAASE PLEEASE TAKE PART!!!

After having a total colectomy did you become incontinent to a point that required you to have a colostomy/ileostomy bag?
4
yes - 15.4%
17
no - 65.4%
5
I only suffer from incontinence occasionally - 19.2%

 
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2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/8/2008 7:07 AM (GMT -6)   
PLEASE VOTE AS TO WHETHER YOU NEEDED A COLOSTOMY BAG AFTER A TOTAL COLECTOMY BECAUSE OF INCONTINENCE.
 
this would be soooo helpful to me and making my decision.  thank you all soo soo much.
xxx
karen
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


Booka
Regular Member


Date Joined May 2008
Total Posts : 60
   Posted 7/8/2008 8:08 AM (GMT -6)   
Hi 2 much 2 bear,
My daughter is going to a bag after a TC,but not because of incontinence,but because she still could not go to the bathroom.I have not read about alot of people going to a bag because of incontinence...From what I have read and what my daughters drs said if you have your rectum still in tact it should not be a problem...I would try it,going to much has to be better than not going at all,and also the drs toldme that it is easier to controll going to much than not at all!! Good luck w/ your decision. I will pray that GOD gives you the wisdom you need!! Also from talking to people w/ bags...life is great...you get your whole life back...My daughter is only 11 and we can't wait to go to the bag...she told the drs if that what it took to have a good life then lets do it!! Talk to you soon
Krista & takera

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/8/2008 9:08 AM (GMT -6)   

thanks so much that really is encouraging.

i dont understand why my consultant told me 50% people who have t/c become incontinent sad ...it scares me.

thanks and all the best to you and daughter..x

karen


1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/9/2008 11:13 AM (GMT -6)   
I had a total colectomy in February. I have never once had a problem with incontinence, I am 30 years old. I also had slow transit constipation and pelvic floor dysfunction. My problem has been quite the opposite. I am severely constipated still. Everyone is so different, so there is no way to know how you will react. Other than the bad constipation I feel much better, I was vomiting daily and in constant pain before surgery, all of that is gone now. I used to have soooo many food intolerances and I can eat whatever I want now. If you are miserable I would do it. Best of luck to you!

missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/9/2008 11:14 AM (GMT -6)   
One more thing, very similar to you, I had a sigmoid resection 3/07 and had immediate colonic inertia....that is why I had the total colectomy.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/10/2008 6:33 AM (GMT -6)   
OMG!!!! why is that!! you poor thing - what have they said they will do for you??
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/10/2008 8:24 AM (GMT -6)   
I have to go back and have two more tests done in August. Some sort of small bowel test with barium (oh, joy), and some kind of CT scan. I cannot imagine what is going on. I don't think my doctor or surgeon did anything wrong, I mean I had the colectomy at the Mayo Clinic, but my body is just weird. My gastro here at home said sometimes after a colectomy people with motility problems will have the next portion of their intestine slow down. Please don't let the fact I am constipated change your mind about having the surgery, overall, I am so much healthier and better than I was before. Being constipated is better than rolling around on the floor in pain. I have been able to go back to work (I was out of work for months). I am optimistic these tests I am going to have done will show what the problem is (I am going back to Mayo for the tests). I think my overuse of laxatives leading up to the surgery is playing into it. I had to use them, though, if I did not, I would not go to the bathroom. If I can answer any more questions for you let me know, I will check back. :-)

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/10/2008 8:58 AM (GMT -6)   
i have been overusing laxatives for a year now since the sigmoid colectomy - i take 28 senna tablets in two lots each day - even then it doesnt always work, but thats the amount i seem to stick to. taking more makes no different anyway and taking less just doesnt kick in. i hope my small bowel hasnt slowed down either. i didnt have any markers left in my small bowel, so maybe i will be ok. you just can win can you.today i am desperate as if i dont go each day my gut blows up significantly and not been for two days now. hope all goes well and you are sorted soon and thanks for your input.
karen x
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/10/2008 11:24 AM (GMT -6)   
I also blow up massive if I don't go every day. If I were you, I would go to the pharmacy and buy fleets phosphosoda. It comes in like a 1.5 ounce bottle. Mix the whole bottle with 12 ounces of water, drink it, and follow up immediately with another 12 ounces of water. Drink as much water or tea (anything not carbonated) after that. You will swell up for maybe 30 minutes to an hour, but then you will start going to the bathroom. It will flush you out really well. I bet that will make you feel a lot better. It always works for me, just have to make sure you follow with lots of fluids. Hope that helps you some!

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/11/2008 10:38 AM (GMT -6)   
thanks i will have a look - dont always have the same stuff over here in UK as USA, but i am sure there is something similar. i have used sodium picosulfate which they give to you before a colonoscopy, but that dosnt always work on me and it blows me up and just sloshes around in my gut.

thanks virginia
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 7/14/2008 3:14 PM (GMT -6)   
I had a total abdominal colectomy with ileo-rectal anastomosis September 5, 2007, and I don't have incontinence issues.
I was little concerned because of my age (53) at the time of the surgery, but only had incontinence problems a couple of times within the first month or two after the surgery. My surgery wasn't for colonic inertia but was for early stage cancer.
I did have some trouble when I used the prep kit HalfLytely the night before my flexible sigmoidoscopy at 6 months post-op, but I think thats because of the prep and liquid diet the day before the procedure. I think that it helped that my surgeon left a couple of inches of the very bottom part of my sigmoid colon as well as the rectum. He also pulled the end of the ileum a little bit past what he left of the sigmoid colon and attached the side of the ileum to the remaing part of the sigmoid colon.
Hope this helps.

Rick
54 yr old male, UC since 1978
800mg Asacol x 3 daily
500 mg Pentasa x 4 daily
Multivitamin
Boniva(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)

Sub-total colectomy with ileo-rectal anastomosis 9/5/2007


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/15/2008 4:06 AM (GMT -6)   
thanks so much for your input i really appreciate it.
karen x
1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/15/2008 5:37 PM (GMT -6)   
Keep us posted on how you are doing and if you will have the surgery. If you ever have any questions let me know as our health situations seem to be so similar. I have been through so much and if the knowledge I have gained from my pain and suffering could help someone else I would at least feel like it served some purpose other than making me miserable.......
Sigmoid Resection due to sigmoidocele 3/07
Total Colectomy due to colonic inertia 2/08


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 7/16/2008 3:40 AM (GMT -6)   

Thanks i will def keep you posted - i just hope i dont have small bowel problems now due to excessive laxative use over the past year...:( 

I will prob ask for the operation sep/oct time - i am waiting to hear from the consultnt who will only perform a t/c - i wrote to him asking if he would at least consider leaving a portion of large bowel... in any event i will prob go ahead with the surgery, as it is no life throwing tons of senna down my throat not to mention i might be damaging the small bowel?? i never thought i might have probs with the small bowel too...

how are you doing now - is the bowel any faster these days?


1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


missvirginiagirl
Regular Member


Date Joined Jul 2008
Total Posts : 39
   Posted 7/16/2008 8:20 AM (GMT -6)   
I am hanging in there. I seem to do okay by using the phosphosoda and eating a low fiber diet. I still don't have the dates yet as to when I will have the tests done, all I know is they were looking at August.

I was shocked that I have still had problems with constipation. My small intestine motility was EXTENSIVELY tested for motility. Mayo Clinic has very advanced tests. One of the tests they did is only performed six places in the world. All my small bowel tests came back normal. I think what may have skewed the results was that I was using laxatives. I would get like two days notice of the test and stop using laxatives, but I am sure that two days was not enough to totally get the laxatives out of my system. I was using 45 Dulcolax (bisacodyl) every night just to have some sort of bowel movement. I should say movements, because it would just be a little here, a little there, never just one movement. I knew what I was doing was wrong, but nothing else worked. I had been hospitalized five times in a six month periods for severe constipation that I was unable to treat myself. I only took those large amounts of laxatives for about 6 months, so I know that was not the cause of my problems, my problems began WAY before then. I had actually never used a stimulant laxative until after my sigmoid resection by the advice of my surgeon. I just had to keep using more and more and more. I so feel your pain about having to use large amounts of laxatives. If I were you, I would try to do the surgery as soon as possible so you can minimize damage. Senna is really hard on you, it was the one laxative my gastroenterologist told me to NEVER use because it can damage nerves in your colon. But there again, it has been used by people for so many years and many people swear it does no damage, so who knows. I could not tolerate it, it gave me terrible gas.

If I were you, I would also try to have a total colectomy. If it is not working right, even a small part of your colon remaining could make you miserable. Keep us posted on your progress :-)
Sigmoid Resection due to sigmoidocele 3/07
Total Colectomy due to colonic inertia 2/08


Johnny B
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 8/11/2008 6:25 PM (GMT -6)   
Had a Total colectomy with ileorectal anastomosis on 10/08. I suffered from colonic inertia and megacolon. It became severely dilated and the entire colon had to be removed. I had some complications due to an infection (peritonitis and an ileus with 2 abcesses) but I pulled thru. Many BMs in the first couple of months but have slowed down to about 5 a day. It was a very long recovery so you have to give yourself alot of time. The doctor told me recovery was 6 weeks, it was more like six months! Now I am better than ever! I got my color back, I can eat just about anything. I thought I would never get better, but I did. No more bloating and cramping, lifting weights and running again. I still have issues with my belly but he is slowly adjusting to the new way of life. Just remember, if you have the surgery recovery time and adjustments are different for everybody and everything takes TIME!!!!!!

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 8/12/2008 3:58 AM (GMT -6)   

Thanks for your input Johnny.  I take it you had surgery last year?  Did you every get incontinent at all. 

Also is the urge to open bowels urgent now, or are you in control e.g you can hold on..doe syour life revolve around when you next 'go'?

i ask this because even though i have ci due to surgery last year, my life revolves around the loo because of the high amount of senna i have to take in order to go.  if i dont take it each day i am in pain/bloating and if i do take it i may or may not go, then i may also need the loo at the most awkward times etc.  the time the senna takes to work each day is different.

well thanks again, and enjoy your life!  wink


1997: Diagnosed IBS
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome/Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate colonic inertia;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  Always in discomfort/pain. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/12/2008 8:33 AM (GMT -6)   

MissVirginiaGirl

Our situations sound exactly the same. I had a resection done due to recurrent attacks for diverticulitis that led to fissures to the bladder. I was 'normal' in the BM department before having this done. After that surgery (about two weeks later) and had a horrible backache and then remembered that I hadn't had a BM since being home. That's when the poop hit the fan.

I waited for two years thinking that things would some how get better, but of course they didn't. I had a subtotal (was supposed to be total) colectomy last year and I'm still in the same situation as I was before.

Recently I had biofeedback (have to follow protocol) and then it's going to be decided if I just need to go back and have the rest removed.


Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.


Johnny B
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 8/22/2008 9:06 PM (GMT -6)   
2much2bear

The first couple of months I had about 10-15 sometimes 20 BMs a day. I was always worried about being near a bathroom. I was very depressed. Everything I ate went right thru me. Metemucil helped some to give bulk to the stool. After about 8 mos the BMs are down to about 4-6. It was a slowwwww!!! process. It also depends on my diet. Whatever I eat usually shows up in a similar condition. I am getting used to it. Sometime stool is formed but mostly very loose. But it sure beats the alternative. I am not incontinent. Even though I suffered from colonic inertia I did not use laxatives. I needed the surgery immediately for the severe dilation (megacolon). I was severely bloated and my tranverse colon was bulging . I have had a few accidents at night but they are rare now. It takes about a year to fully recover from this type of surgery and for your small intestines to compensate for the change. Once again, "TIME" is the most important healing factor for any type of surgery and for some it takes longer than others. Regarding your fear of the bag- My rectum was saved and even if it is not, a"J" pouch can be constructed. I have a friend who lost his entire colon including his rectum and he now has a J pouch. He is doing great after 10 years. Just make sure you find a "GREAT" colorectal surgeon. I am from the Long Island, NY area and I got a great surgeon!

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 8/23/2008 8:17 AM (GMT -6)   

hey johnny

thanks for the info.  it appears we are all so different.  

i have been seeing diff colorectal surgeons - the best there is in london so far (i hope).  he said in march that i would benefit from a tc, but i was scared as he said i wld need a bag maybe due to incontinence. but i see him again in sep as i want the surgery now as everything hurts and is getting worse.  i cant believe you never took laxatives!

good luck for the future.


1997: Diagnosed IBS
2003: Pelvic floor repair surgery
2006: STARR surgery for mucosal prolapse/Obstructive Defaecation Syndrome.  Also diagnosed with slow transit
2007: No difference. Had MRI scan showing a partial volvulus 
2007: Therefore surgeon recommended a sigmoid resection which resulted in immediate colonic inertia
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once).  In discomfort/pain most days.
 
Scared to have TC as told I could become incontinent - but looking to have surgery before end of year hopefully


shmuel
Regular Member


Date Joined Sep 2009
Total Posts : 20
   Posted Today 11:11 PM (GMT -6)   
HI - I HAD THE SITZ MARKER TEST AND IT WAS ABNORMAL AND I HAVE HAD CONSTIPATION FOR 40 YRS TAKING LAXATIVES, BUT IT WAS NOT UNTILi I HAD MY ILEO-CECAL VALve removed from my intestine and placed at the stoma of my Indiana Pouch that I began to experience nausea- disabling nausea with belching. I have been suffering with this for 2 yrs. I am scheduled to have a total colectomy with ileo-rectal anastomosis sometime in Oct. 2009. Does anyone in this forum know if this surgery will relieve the nausea, I know it will help the constipation, but it is the nausea, that is really hard to live with. I also have psuedo-obstuction with slow colonic motility. thankyou for any feedback!!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 9/21/2009 1:58 AM (GMT -6)   
hi shmuel,
i'm so sorry to hear about your struggles. i'm even more sorry to hear it's been going on like this for 40 years!!!!! unbelievable!!!!! i want to help you and i think you can benefit A LOT by reading the total colectomy threads, that's where all the stories about colonic inertia/slow transit constipation are, there are tens of stories of (mostly women) who've been through the surgery. i must say most stories are GOOD ones, so it's very encouraging.

i myself had the surgery on Aug 16 of this yr and so far i feel it's been THE BEST thing i could do for myself. i feel SOOOOOO much better now. i've been struggling with sever constipation for 16 yrs, from the age of 20 till 36, i couldn't have a bm on my own, only by taking ENORMOUS amounts of laxatives and that was getting old, laxatives stoped helping me, this prob was consuming my life TOTALLY, i got really miserable. i finally had the surgery on Aug and feel SOOOO relieved. i now have 6-10 small bms a day and it feels simply AWESOME!

i don't know about the nausea though, i never had nausea, not before surgery and not now. so i can't answer you about that, but i suggest you consult with more than 1-2 drs to thoroughly discuss your chances.

so if you google "total colectomy part 3" (parts 1-2 can be found only by turning back threads and that can take weeks!!!), you will find a wealth of info about the surgery and it's outcome. you can also join us on the "TOTAL COLECTOMY PART 25" thread and talk to more women who had the surgery, or about to have it soon. there are two of them who are also having it like you on Oct!

i wish you all the best of luck and to finally have the relief you so need after so many yrs of suffering. please feel free to ask any questions you want, i'd be happy to help if i can :)

take care and G-D bless!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


shmuel
Regular Member


Date Joined Sep 2009
Total Posts : 20
   Posted 9/21/2009 9:45 PM (GMT -6)   
2be colon free- thank you so much for reading my post and responding, you have been very helpful. Thanks,

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 9/22/2009 8:37 AM (GMT -6)   
shmuel,

why did you have your ileocecal valve removed and why do you have the stoma?
I also have CIP (chronic intestinal pseudoobstruction) and had a non-working colon before my colectomy/ileostomy. So far the ileostomy has given my significant improvement, in particluar with the extreme constipation I experienced before.
I still have issues with my stomach/small bowel, nausea, fullness, problems with eating but their severity has decreased due to the ileostomy. The stools can't back up so easily any more.
Nonetheless I am on tube feedings in addition to what I can eat by mouth.

If you would like to know more don't hesitate to ask.
Sorry my English is not good cause I am from Germany.

Sarah

shmuel
Regular Member


Date Joined Sep 2009
Total Posts : 20
   Posted 9/22/2009 11:36 PM (GMT -6)   
Sarah- thanks for responding. i had the ileocecal valve removed and placed at the entrance of my Indiana Pouch stoma- it holds my urine, because I had my bladder removed. The doctor thinks that the wastes in my colon back up into the small intestine d/t constipation and lack of the valve to keep things in the large intestine, and I sense this with nausea. He told me he can't promise that the nausea will end with the total colectomy and ileorectal anastomosis, but that it should help. I am so hoping for this, because the constipation and nausea are disabling, and I really want to move forward in my life. Thanks and if there is anyone on this forum who was helped by the above surgery, please tell me, I need something to hope for. I feel like I am living behind a curtain (not really living) for 2 years. Shmuel
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