Colon Neuropathy?

ahdjdbcjdjdbkf

Hello, Ladies. I've been having severe conatipation for months. Yes, I have told my Onc, Gyno, and GP. All just recommend dangerous drugs I don't want to take like Miralax. It has changed my appearance. I not have a big round middle where I consistently carry 5-10 lbs of unprocessed food. I have tried juice, prunes, tons of health food store remedies, the most expensive probiotics, accupuncture, reflexology, magnesium, and on and one. I eat a mostly vegan high-fiber diet. Fiber drinks seem to just make it worse. I think I'm allergic or sensitive to psyllium. Enemas do help but only for that day. I have yet again purchased another remedy yesterday. Aloe did work but it quickly stopped working. So now I believe it is either something physical like neuropathy or it is totally emotional. Louise Hay talks about how constipation is related to being stuck in the past. That certainly resonates with me. I look back on the glowing magnificent life I once had when my parents were alive and well, we had beach homes and skied and traveled and boated and loved the high-life, I had a one of a kind sports car, I attracted the hottest men, etc. etc. I compare that to the wreckage that has come down upon me and truly I do struggle with the whole concept of the future and making it a friendly place. I miss my boobs, my dad, my hot dog body, my mom being well, my sexual functioning which is just gone, my extreme athleticism destroyed by drugs and Lymphedema, the loss of friends from that high performing lifestyle. I know some of this comes with aging for everyone. Mine just hit hard all at once Losing my dad from cancer while I was in the height of chemo along with all the financial changes. Most would read and just think how fortunate I've been to have lived so lovely. I fully agree. But it is now a challenge for me to see loveliness in my future and not be stuck in the past. For today I'm sick and bloated and depressed. I'm trying a new remedy, new probiotics, prunes, and at the same time trying to see the future. I know even thinking I have a future is a huge luxury on this board. HUGE. I don't take it for granted for a second. My mom is very ill and will leave this earth soon. For my own survival and well-being I will have to find my way to live. My sister is very very sick with life-threatening illness due to stomach cancer surgeries and radiation. There seems to be little hope she will ever be better. Her daily misery is nearly unbearable to witness or to try to have a good day myself. I have considered that I have empathy constipation because I'm not OK a being well when she is so sick. I also have 2 silinga with MS and it comes with that too. Luckily my boyfriend has not abandoned me and I have not lost my job and my sister is still on this Earth and there are some very wonderful things in my life too. Today I can't fit in any clothes from this constipation. I might need to drink a couple of bottles of red wine! Love, insights, and experience welcome. I won't do prescription drugs for this. Im open to most else. I always share at my Onc check-ins. 

Holeinone

Maria, I do not have any great advice. I have the fear of constipation, due to having 1/3 of my colon removed. Severe diverticulitis in 2011. 

Between that & stage 3 breast cancer I am 40 lbs thinner. I did take Miralax ( small dose ) a couple of days a week after that surgery, and a few times during A/C. 

I am sure you drink plenty of water, do you like green tea? It calms me, well red wine seems to do the trick also...lol...I have heard of people eating pot snacks for constipation. Brownies, cookies....

Breast cancer is the disease that just keeps giving......hate it all...

ahdjdbcjdjdbkf

Thanks for your experience and thoughts. It is definitely a common challenge not just for cancer survivors but for many people. I'm depressed today pretty badly. It's sunny and nice out. It's 4:00 and I never got out of my dirty bathrobe. I'm too depressed by this situation to face the day or other humans  I hate it because during chemo I swore if I got better I would never live like this again. My boyfriend is suiting up for a 100+ mile bike ride  our first star was a 107 mile bike ride.  

Tomboy

mariasnow. all i am saying is i am very sorry to hear about your troubles. it's why i don't get why the med proffession find it odd that we just can't move along and get over it all. i did see a neurologist for some other problem, and he did tell me that it is possible to get neuropathy anywhere that there is small nerves. Are they sure you really don't have a blockage of some sort? i know why i am constipated, it is because i take pain meds that do that, but for now, i still need them. i take milk of magnesia about twice a week, and it really does seem to help move things along pretty well. you have to drink a  glass of water after you take that. 

for the depression, i have been taking wellbutrin for over a month now, and it is necesarry, because like you said, i wasn't showering or getting out of pajamas, or wanting to do anything much, i would have to force myself. better living through chemistry. i figured if chemistry i what "took care of" the cancer, then chemistry might help me to get through the after affescts. i am trying to walk and do something every day, hard when letrozole hates me.

but you do have a serious lot of things happening to the people you love, and i am really happy that your man hasnt abandoned you. that is truly terrific. 

i am also doing benefiber, it is helping too i think, i mix it with oj or kefir, and i really can not taste it, a plus. it is wheat dextrin, if you are not allergic, it is the only wheat i do.

the idea of carrying around that much unprocessed food is disgusting, and i am sure i am full of shit too.

i  told my man that its weird about food. when its on the plate and we are eating it, it's food. when we are done eating, its automatically garbage, whatever is left on the plate. weird. i stand in my kitchen cooking future garbage.

ahdjdbcjdjdbkf

This forum helped and just someone kind out there replying  I decided to put my dirty bathrobe in the washing machine (and bleach out the wine stains), put on clean PJs, and open a bottle of Cabernet and watch "The Devil Wears Prada" and just do what little things I can for myself. I arranged for nursing care for my mom this week and started a bit of prep for a business trip I leave on tomorrow.  I'm extremely down but I'm not calling myself out just yet  

Holeinone

Maria, I am also a Cab drinker....so, enjoy every sip, be kind to yourself...

Tomboy

you will have better days, again mariasnow! maybe you need a small vacation? my man is smarter than me, we just got back a week ago, he took me for five days of hiking through the sequias, and is already planning a trip to the grand canyon. i was really reluctant, but it was pretty good... i will be thinking of you, and wishing you very well, and yeah! have that cab! sounds good to me! 

208sandy

Try warmed up prune juice - I know it sounds awful but it worked for me when nothing else would.  Miralax is a waste of time it takes days and days to work.  If you are taking Metamucil or the like be sure to drink tons of water because if you don't it will constipate you further - glad you're out of your bathrobe in into the wine!!!

ahdjdbcjdjdbkf

Thanks to all for the love.

exbrnxgrl

Senna tea, like the Smooth Moves variety, works well for me. I, personally, have no objection to Miralax, but try to move things long through foods and glycerin suppositories. You have gone through a great deal of stress and changes but don't blame yourself (sorry, not a Louise Hay fan). As for friends who disappeared? Not really friends were they? Change in lifestyle? That's just the material stuff and happiness should never be based on that. Before bc, I got divorced. I left a big house in a tony town behind. I live in a small town house in a working class neighborhood now and have never been happier. I never spend much time thinking about what I've lost or don't have, because that does nothing to help me today. I do take Effexor as I believe in better living through chemistry. It works for me and even at stage IV, I enjoy what I have, because I don't know how long I have. I hope you find your peace soon and get the constipation to take a hike.

ahdjdbcjdjdbkf

Thanks for your thoughts. My next plan is to start taking organic beet powder. I have gotten some good advice from those who tried it and said it was a miracle. I had once used it before and had good results. 

Tomboy

Thanks! I will check that out for myself too!

ahdjdbcjdjdbkf

I will give it a try and let you know  I'm reading that beets, carrots, their juice and beet powder are very helpful and have had one person tell me it worked really well  I'm all over it and will report back!

Tomboy

i am finding it pretty amazing, all the things we learn about since DX.   nutrients, anti inflammatory foods, carbs... all that stuff i am studying just to find out what can help. Right now, i am enjoying some iced green tea with jasmine infused. delish! antioxidants! makes it easy to stay well hydrated... yeah, let me know how that works. i know dried apricots work for me, like gently the next morning, but...gas comes too. 

I never had any of this before! GRR!!

and thanks for popping in too, exbronxgirl.

and so how did finding nursing care for your mom work out? thats a kind of sad but good thing... i was just really happy last month, cause i had begun to worry about my mom driving. she's going to be 80 in january. and she is a feisty redhead, and quite obstinate.  and none of us, her kids, were willing to try and argue with her about that, or anything, really! i think we are all still fearing her in a very deep way, just our family dynamics. she has had a pretty tough life, and she is not happy too often. she still cooks and cleans for herself, but she has been a hermit for many years. but she gave up her license! no one had to beg her! i told her i was dreading that day, cause i thought she would never give that up, and that i was proud of her! it just amaze me some times, when i think of all the people getting older and dying, and then its our turn... and then so on and so one,its kind of a bittersweet and lonely feeling, that we all do that. wow. where'd all that come from? i better go give her a call, see how her day went...

ahdjdbcjdjdbkf

I have a promising early report. I started taking a plant-based protein powder that has been, carrot, and celery powder just yesterday as this specific product was recommended to me by another sufferer who has had the best results with this one product. Today is the first time I have had a bowel movement naturally without an enema in quite a while and I actually had 2. I'm hoping it is a trend if I stay on it. Feeling a bit hopeful about it. I've also made a commitment that I'm going to get more serious about the extra weight I am carrying as it has really impacted my lymphedema and it is a call to action. 

Tomboy

That's terrific, mariasnow! excellent! Do you mind sharing the brand name? i'm gonna go get me some too! The moving and excercising thing is hard to do, those hormonals just knock the stuffing out of me. But like you, i was extremely active before all this, but if i can force myself to even just walk, i do feel so much better!

Here's a toast to us, to kick ourselves into better shape. i am not giving up, or getting old, just yet...

ahdjdbcjdjdbkf

I took Arise and Shine "The Alkalizer." I also bought some from Hallelujah Acres as that was recommended to me. I'm trying them both  

Tomboy

thankx, i am going to check them out, & i am awfully happy they are working for you! don't be a stranger!

ahdjdbcjdjdbkf

I'm grateful anyone anywhere cares tonight  I'm feeling very alone tonight and that no one cares about my health or self-preservation. 

Gretta

Hi Mariasnow,

know exactly what you mean.  I'm really scared too.  Like you had surgery first & then chemo.  One of my margins was only 0.4mm so I'm thinking it's gonna come back, also grade 3 ER+ her2 Pos.  Night time is the worst I have all these horrible scenarios running in my head.  Like you I had an amazing life before this, I was the happiest I've ever been & now all that is shattered. 

Take some deep breaths & know that you are not alone. xx

 

exbrnxgrl

Maria,

We may not be with you in person, but you can always come here to find someone who cares. I think night is always the most difficult time for feeling alone or down. But hang in there, because there is always the morning. Your old way of life may be gone, but it is quite possible to build a new, though different, life, and be just as happy. For me the key is not to dwell on a past that can never be again (yes, some mourning is good) but to move forward until you can find joy with what is. Thinking of you.

ahdjdbcjdjdbkf

Thank you  I appreciate the love and thoroughly admire your courage and I do aspire to better days  

Tomboy

we will get there, maria. i was just watching the news, and they were doing a segment on parkour, and fencing and things like that, and i did get more than a twinge of anger and regret, because my days of throwing my body around the world like that are for sure over. i did used to run and hop and climb and swing myself around till i was exactly 53, and then i was diagnosed. and that year i could barely drag my ass around. my innocence of the world not being able to hurt me is pretty much gone, i do a lot of "guarding", if you know what i mean. but i have walked all over utah zion national park since then, all the trails were amazing. and then a couple weeks ago, my man and i did the sequoias, and now he wants to go to the grand canyon! i think we both have a little more work to do on our bods before then. i wish you lived near me, i have lost both my best girlfriends in the last couple of years to cancer. i am thinking of you and wishing you well, and so is bronx and gretta! ok?

cider8

Consider trying the Squatty Potty:  http://www.squattypotty.com/Default.asp  I have not used personally but I don't have constipation issues.  I still want to get it someday.

Do you take probiotics?  Treatment sure gives our gut hell and a variety of probiotics can help restore the good bacteria.

ahdjdbcjdjdbkf

I have the squat pot although a different brand called The Welles Step. I do think it is  good product. 

Tomboy

So how is everybody doing? Man I took the full dose of milk of magnesia the other day, and it works like crazy!! wow!! But I think i am going to make my own wooden version of the squatty potty for my bathroom, more discreet. I will put a good washable finish on it. Hope all is well with you mariasnow.

ahdjdbcjdjdbkf

It took a long time to get better but I ultimately did. My body healed itself from the drugs and neuropathy and things have cleared up a lot. Although, I do require some supplements a lot to stay on track. I accept it. I'm doing well. Thanks for checking on me Tomboy!

Tomboy

i am glad to hear it, Mariasnow! Sounds like you are doing better than me, i am sstill full of aches and pains, but i can walk eight miles, cause i did! tired of pain though. i am starting to wonder if they gave me too much chemo.

ahdjdbcjdjdbkf

Tomboy, I have ongoing issues too - low white blood counts and platelets 2+ years after chemo. I push through the fatigue from this daily. It is what we have to do. I take the best care of myself I can. I'm trying not to worry today for just one day and let it all be.

ahdjdbcjdjdbkf

I ended up getting help from an acupuncturist for this including some Chinese medicine that has helped quite a bit very gratefully.