New with Questions and Concerns

Submitted by Tree Woman on June 16, 2013 - 5:33pm
Body: 

Hello,

I’m new to the site and wanted to introduce myself and ask some questions. I am 30 years old, and am currently single: I have no children. I am totally blind, and my blindness was caused by shaken baby syndrome—I was shaken by a nanny when I was six months old. The shaking left me paralyzed and very recently it’s become quite clear that the pops I am experiencing were probably predisposed to happen because of paralysis in early development. I have a lot of motility issues similar to issues a friend of mine also experiences and she is paraplegic. Anyway, here is my story. Going on about six years ago, I took an antibiotic which made me have severe cramps as if miscarrying a child: what was “born” instead of a lost child was my rectum. I called my mom about it and she said it sounded like a hemoroid. Five years and tons of hemoroid cream several doctors and specialists and different insurance companies later, I was diagnosed with a full thickness rectal prolapse and sent immediately to see a surgeon. The prolapse was fist sized at the time and is growing with every month Kaiser is doddling about not taking my concerns for faster treatment seriously. A year after getting the prolapse I acquired IBS. It’s unclear if the IBS is a separate problem as my doctors think or a symptom of the prolapse as I think. About a year ago, I began noticing slight uterine prolapse—cervix about 2-3 inches away from the opening. At this point it has progressed to just less than an inch from coming out of my vagina. I am doing acupuncture, used ben wah balls, am taking over eight supplements, tried various dairy and gf diets which are not part of the problem, and was told by my gynecologist that the only solution to uterine prolapse is hysterectomy. I think I have a rectocele too as I realized I have been splinting since I was a child and when I try to manually push the cervix/uterus back into place the rectal prolapse comes out, and the rectal prolapse makes the cervix descend further when I am having a difficult bm.

I am so thankful I found this site and have a few questions. First, is there any way to get the book in an audio or electronic format so I can read it? Second could anyone describe in more detail what to do in firebreathing and the ww posture so I know I am doing it right? I am concerned that I won’t know what is going on in the DVDs and have a hard time with a few of the videos: I think I have things down but am not sure. Also, has anyone had a ginormous rectal prolapse along with other prolapses and is surgery my only option? It’s hanging pretty far out of my body and while I think I can avoid surgery for the possible rectocele and the uterine prolapse, I am resigned that I may need to surgically deal with the rectal prolapse. If it goes untreated it gets to a stage where sneezing and coughing brings it out of hiding and if you don’t fix it then, it comes out permanently.

I was emotionally dealing with the rectal prolapse the best I could, but when I started barely having a vagina during bowel movements I began hating myself and disowning my body. I love the name of this site because it is completely opposite how I have been feeling: broken, disgusting, half a woman, and worst of all like I have lost the right to deserve good or be worthy of love and respect. The last several weeks have been some of the hardest and darkest I can remember going through. The shame and fear are palpable and I have systematically declined most social outings because I feel damaged. Between blindness and prolapse, I am also convinced that no man will ever find me attractive or worth the trouble to get to know. While I am not currently in physical pain, the emotional pain is immense.

Forum:

alemama

June 16, 2013 - 9:49pm

You are worthy of nice things! Respect, feeling good, love- all these things and more :)
I can't answer any of your questions about the technical side of things (regarding dvd etc), but somewhere I wrote out step by step firebrething instructions. Maybe you can find those...if not, ask again and I'll search.

Christine

June 16, 2013 - 10:31pm

Dear Tree Woman,

We would all love to see you address your rectal prolapse with our postural methods. A rectal suspension comes with great risk of nerve damage and a particularly intractable, “high” constipation - feces come down to a point and then stop, requiring digital evacuation. Consider carefully how your present condition might be far preferable.

What you describe as the inevitable progression of rectal prolapse does not seem valid once the dynamics of natural breathing and posture are taken into consideration. Every time you inhale, your respiratory diaphragm comes down to your last set of ribs. It pushes everything - all your abdominal organs and uterus and bladder too - down and forward. Allowing internal pressures to move the organs forward against the lower belly is the only effective treatment for prolapse of any kind. Your rectum is ballooning out because internal pressures are pushing it toward the back, not the front. The connective tissue supports that tether it to the back abdominal wall have become stretched. From my perspective, you can reverse this process, but it will not happen overnight.

The book is not in audio or electronic format, but we are planning a third edition for the end of the year, so hold that thought!

Can you tell us more about your situation? Are you in a wheelchair? How much mobility do you have, and to what extent has your spine developed normally?

By chance was Cipro the antibiotic that caused the prolapse?

I think you’re going to be just fine without damaging surgery, once you understand a little more about your anatomy.

Wishing you well,

Christine

Tree Woman

June 17, 2013 - 7:39pm

Thanks for your help with this! No, I am not in a wheelchair and go to the gym, take brisk walks, and have run in the past with sighted help (but I don't really like to run.) I've been doing the ww posture ever since stumbling on your site two days ago. Unfortunately I already have to manually dislodge stool during a bm, because it get stuck toward the end of the rectum. I feel like my sphincter muscles are extremely weak as well, and I cannot suck the prolapse back in with my muscles, I have to use my hand. I also have severe ibs, mostly diarrhea, but I used to have lots of constapation too (this has significantly decreased since starting acupuncture and now I am constapated only once every month.) The diarrhea can leave me on the toilet for hours, and I also have pain with gas and bloating. When that is coupled with diarrhea I can have flare up episodes that have lasted as long as 2:30 in the afternoon to 1 in the morning. This prevents me from having any kind of job that requires a daily commitment as I have no way of knowing when the flare ups will occur. I tried a dairy free diet for twelve months without success, and a gluten free diet for eight months without success (that is, without significant improvement of ibs or prolapse.) I am taking chinese herbs, metamusil, CoQ10, a liquid multi vitamin and liquid probiotics for fast absorption, vitamin D, omega 3s, digestive enzymes, n-acetol glucosamine, and melatonin to go to sleep. I am also on an antidepressant and anxiety med as I have generalized anxiety and am very depressed. I also take birth control for cramps and so I don't have children when I don't want them. I am otherwise very healthy and active. I can't recall the antibiotic I took that triggered the constipation: it was an antibiotic to help me get over a sinus infection in fall 2007. I've got a massive syllinder about two inches wide and up to 4 inches long coming out of my bum every time I have a bowel movement.

I have not yet finished all the tests at Kaiser to help determine what exactly is going on. I absolutely refuse surgery on the uterine prolapse that I also have had for over a year even though it is getting worse. I've had the rectal prolapse for 5.5 years now and it started out smaller and got bigger. I had to dig out the poop around the same time I got IBS which was about a year after the rectal prolapse started (I was being treated for hemoroids which I did not have and was misdiagnosed for five years.)
How much do you charge for a phone consultation? Do you ever skype? For a decision as critical to life as whether to have the rectal prolapse surgery or not, I feel I can't make it just based on what I hear on a website. I'd like to speak with you in person and I would also love to read any first hand studies and journals on the subject. I simply do not know who or what to trust anymore. I have extreme distrust of western medicine, but have also found that the world of natural medicine can be just as hit or miss. I have no doubt that your approach is helpful and accurate, but am wondering whether it is enough in my case. Could I cut down the symptoms significantly through posture and exercises, not lifting heavy objects such as carrying a fifty lb backpack, and eating local organic food? I will end up doing all that anyway, but I worry that the rectal prolapse has gotten so out of control and is so chronic lasting as it has for years that I am looking at living with this the rest of my life and being less independent or rolling the surgery dice and praying for a full house. So I would absolutely love to believe that I can heal from this without surgery but I feel the need to be extremely cautious about any decision I make about this. Are their people who follow your suggestions who have rectal as well as uterine prolapse, or rectal prolapse with rectocel or other 'cels, who have found their prolapse significantly decreases by changing posture and doing the exercises? I have to use gloves every time I use the toilet to get the stool out and push the thing back into my body. Many times a day, I deal with just how unsanitary this is, not to mention the fear that it will get perphorated or I will get lesions or cysts which are extremely common with this kind of thing. I can't go camping or do many all day outdoor activities because of the hygene issues. Since I am blind it is difficult to find unfamiliarly located public bathrooms, so I usually can only go to places I have been to before so that if at any time I need a bathroom, it will be there. My independence is significantly diminished and my quality of life greatly impacted. How long might I have to live with this without the surgery-- are we talking one year, or fourty to fifty years? I want my life back! Thanks!

Tree Woman

June 17, 2013 - 7:49pm

Oh and yes I have heard the surgery horror stories, and have very strict notions of what would and wouldn't be okay if I ever were to have this surgery. No full abdominal surgery, only laperoscopic. No mesh. No colostomy of any kind or duration. And, they are not to touch my overies, uterus, vagina, or anything like that under any circumstances. I have a friend who went through a full abdominal surgery for this and was in the ER 8 times with complications from the surgery. The first surgeon she saw casually told her that while they were "in there" they would just take out her uterus. He admitted that no, nothing was wrong with her uterus, it was just standard procedure. She was 32 years old and had not yet had children. She fired the surgeon. My best friend who is a doctor is encouraging me to have the surgery since she says they do laperoscopic now and it doesn't leave much scar tissue... but I personally think that we are at the same point in the evolution of medicine with respect to the pelvic floor as medicine was with respect to germ theory in 1745. So, I don't know what to think or who to trust and this is very anxiety producing for me.

Christine

June 18, 2013 - 1:28pm

Hi Treewoman,

Thanks for filling us in with more detail. Yes, it is obvious you have a very sick gut.

In this culture we view medicine as magic bullets that go straight to the problem and sort it out, whether depression, IBS, etc. Even if the bullets are herbs and vitamins, we still use them like pharmaceuticals, swallowing them down by the handful thinking somehow they will all add up to health. From my perspective, this is a completely wrong approach.

In a perfect world, I would suggest that you take a year to truly heal. You would discontinue all the medications and preparations listed. Your diet would include such things as sprouted grains, soaked nut and seed milk, fermented cabbage, all biota cultured naturally by the microorganisms in your own environment. You would spend your days sitting in the sun, gently exercising, and developing a spiritual practice that trains you to be in the moment. The present moment is always a positive state - this reality has been verified by many spiritual teachers. Anxiety and depression come from living in the future and past.

I highly recommend all books by Ann Wigmore. I’m so grateful for her pioneering work. Although we are not raw foodies or even close to the “health nut” she was, I learned exactly where our true medicine comes from and how to use food to treat illness. Our beings - mind/body/spirit - are embedded in nature, and nature is the source of our true healing.

The Whole Woman posture is simply keeping your feet pointing straight ahead when you walk. When standing, you want your knees completely straight, but not bowed back. Don’t try to stick your bum out, but rather pull your chest up. Keep your shoulders down (not back) while pulling up through the back of your head and neck. Breathe through your nose at all times and relax your face and jaw by keeping your tongue resting lightly on the roof of your mouth.

Firebreathing is simply an exaggeration of natural breathing. Breathe in (through your nose) and lift your tailbone, breathe out (through your mouth) and bring your navel to your spine. The best position for doing this is widening your stance, bending at the hip and knee, and placing your hands on your thighs above your knees. Lift your tailbone as high as you can on the in-breathe, tuck your tailbone under and pull navel to spine on the out-breath.

I believe the postural work will be greatly helpful, but it is not a magic bullet either. You need healing at a cellular level - total convalescence so your gut can heal. Rectal prolapse is not the only serious problem you are at risk for, but an exacerbation of the bowel inflammation so severe that surgery may become necessary. Understand that “fixing” the rectal prolapse is addressing the symptom and not the cause of your illness.

I don’t think I have any other tricks up my sleeve for you. I will be sending you prayers for healing, however, and hope very much that you get the help you need.

Wishing you well,

Christine

Tree Woman

June 18, 2013 - 2:58pm

Thanks Christine. I really appreciate your descriptions of firebreathing and the posture. Sounds like fortunately I have been doing the posture correctly. I have been keeping it up as much as all day as I possibly can. Occasionally I find myself slipping up, but I gently bring the alignment back to the right position.

I just had a disappointing conversation with my primary care physician. I was informed to do lots and lots of kegels, no surprise. She didn't know if scooping poop out would hurt me, or I also was told I ned to eat very little dairy, fish 4-6 times a day, only whole grains, no cookies, cake, etc, whether made from rice, corn wheat, etc. I thought the gluten free diet was hard but I find myself already mourning needing to be so so terribly restricted in diet. I also cannot process nuts and seeds, so that even greater restricts the diet. I'm tired of restrictions, sacrifices, and the stress of having to be picky while dealing with food. Imagine trying to get through a buffet line with a sighted friend putting food on your plate, and you have to say no, not that, that, that, or that, etc. It's such a burden on friends and family who do/eat/are whatever they want. Of course I am happy to eat as many fruits and vegetables I need, but I love sweets. I was also told that Kaiser doesn't really have physical therapy, and I might have to pay for that out of pocket. I have medicare for a reason. I can't pay out of pocket.

Speaking of which I really do appreciate your suggestions for recovery and your advice to not throw supplements at the problem. I can barely afford the supplements so I will cut back on all but the probiotic and vitamins. I dislike eating tons of fish so I might keep taking omega 3s.

I got a lot of "I don't know" answers from my doctor. Going out on my own and walking away from the status quo might be my only option, but it is terrifying to me. I don't like risisks of any kind.

I do finally have a friend who will attend farmers' markets with me, and I am switching to all locally grown food. I will start with all local food at home, and slowly seek out the local places to go out to eat at as well.

Sadly this is not an ideal world and I do have a dissertation to write, but I will do all I possibly can for myself. I'm just still in the grieving stage. And I am scared, very scared, to make a wrong decision of any kind. This prolapse condition makes me feel like I am walking through a field of landmines. One misstep and I am doomed.

I am going to just suck it up and get the whole woman bundle and send the book off to my school, and see if they will scan it. I'll just have to get over, later, how they will now know what has happened to me.

Anyway sorry for seeming so down, I am overwhelmed, sad, exhausted, tired of prolapses, angry with my body, and angry at American culture for promoting lifestyles and diet that produce disease and that healthy choices are no more than often socially outcasting. It seems our only social times in this country surround eating, and if I can't eat at the international house where I was making friends, I am all the more isolated. I will figure it out, it just feels like just one more thing has died.

fab

June 19, 2013 - 12:57am

The thing with making a commitment to WWposture, is there is nothing to be scared about. It will not hurt you. The commitment must ultimately be made on the basis of intuition. You can see how thinking rational at this stage is turning you in circles because intuitively you are at this stage afraid of possible side effects/outcomes of an operation and yet you cannot quite get your head around WW. The problem is it takes time, and if in the interim you are afraid of an operation then making WW work is a pretty rational option.
Having adopted WWposture, I would be looking closer at the IBS. Of course scooping hard stool out will hurt. What is the distension of the rectum alone doing already? What of the effect of the straining on your prolapses that you inevitably will be doing? What if your nail, inspite of gloves, should cut you and so on. When you start to get hard stool, how long does it take; 1 day, 2 days, 3 or 4? Whatever it is do something straight away. As soon as 1 day passes without stool, lubricate the opening of your rectum. When you feel any stool at all in your rectum try a suppository or enema, horrible things but you need to keep the rectum clear for comfort reasons regarding your prolapse and just old stool hanging around does not help you feel good.
I take it that it is with the diarrhoea that you have 4-6 stool movements a day. I noticed co-incidentally that you also have 4-6 helpings of fish a day. Unless you have diabetes and need to keep your blood sugar on an even keel or something similar why are you eating 4-6 times a day? Why not think in terms of eating three times a day. That would mean three stool movements a day and a lot less work for your rectum. Your ultimate plan would be to keep eating three times a day and pass stool only once a day: many people are able to do this quite successfully.
Look, I am sure you are surrounded by kind and knowledgeable people but wholegrains to someone suffering from IBS does not make much sense to me. Again, I would be following my instincts on this. If you don't like fish, you limit it but don't go worrying about lack of Omega 3 and feeling you have to supplement. If you don't find any problem with rice, well eat it, if you know for sure that seeds are real problem then ban them and so on.
If your gut really is in such a terrible mess, you may like to start from the opposite end and instead of eliminating foods start instead from scratch. Boil up a couple of cups of brown rice. The first meal just have the rice, second meal just the rice and a bit of fish, the third meal the rice and a bit of fish and a tomato or whatever it is you are confident you can eat; in the process making sure that you after a few days are getting basic vitamins, protein and nutrients. See how you go as you keep adding more foods until you hit trouble, then back track. Even make a note of the suspect food and don't try it for another week or so. However you approach it, Treewoman get that gut of yours right and it will give you a chance to start feeling relaxed and comfortable (diet is a basic happiness maker just like breathing) again and then you will be able to review what is happening with your prolapses from a much more comfortable position.
The basic tenet apart from posture is that you avoid things that pull the prolapse down, straining on the toilet or frequent elimination due to diarrhoea are the main contenders for this and these in turn go back to your diet.

Surviving60

June 19, 2013 - 4:05am

Hi Tree Woman - To Christine's description of posture I would just like to add one basic thing. Keeping the belly relaxed was the hardest aspect for some of us to get hold of - we have all been so tight and sucking our bellies in for so many years. The relaxed belly and the pulled-up chest create that lovely lumbar curvature that allows the organs to find their natural positions.

I have food and bowel issues myself, not as extreme as yours. I have not improved my diet anywhere near to the extent that I need to. But I have found that this posture correction just makes everything "work" better. It takes time; the lightbulb did not go on right away.

You have so much to deal with Tree Woman, and lots of women here rooting for you!! - Surviving

Tree Woman

June 19, 2013 - 10:02pm

Hi Surviving,

Thanks for the posture tip! I've been doing the ww posture for four days now, since coming across the site, and the relaxed belly is the hardest for me. But I keep reminding myself and can effectively stay in ww posture for a long long time, most of the day. It's already helping me!

Hi Fab, I hear what you are saying. I currently only eat three times a day and don't eat much fish... I do take fish oil supplements... my primary doc just implored me to eat fish four times a week to which I would have rolled my eyes were I not on a phone appointment call. I have a bm more times a day than I eat. It's not that I am scared of ww approach hurting me... of course it won't and it makes tons and tons of sense! It's that not following status quo makes me uneasy in general. That said, it's never stopped me from following my instincts and abandoning the norm, I just get anxious about it. Yes I eliminated dairy and gluten 12 and 8 months respectively and did not see improvement. I am starting a food diary and if that gets me nowhere in a couple weeks I am going to do an elimination diet like you suggested, where you take out the eight most common problem food groups and slowly add them. Yes I am dealing with a lot but at least I am not in pain when not having a bm, and the bms aren't excruciating just irritating-- and can last for over an hour. I only get hard stool about once a month and it usually takes 1.5 days to pass, although I also use a product called miralax to help when this happens. I do own a couple fleet enemas and next time I will give that a try. Mostly the stool gets stuck because my muscles are too weak for the parastalsis to work right, and it is thick and sticky or loose and watery. It's a common side effect of paralysis and I was paralyzed for a while as an infant.

Anyway I didn't want to give you the impression that I am not open to following all the recommendations on this site, because that is absolutely not the case. I have already benefitted so much from you all hear and all the suggestions and Christine's work, and the sense of empowerment I am gaining is a true blessing. I have contacted the disability resource center at my school and they are looking into getting an accessible copy of Christine's book for me. Meanwhile I will continue learning from the resources here and from all of you. One day at a time.