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Constipation (severe and chronic). Really frustrated. Any hints?

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Irritable Bowel Syndrome
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Posted 11/23/2014 11:07 PM (GMT 0)
Hi,

This is gonna get long. I apologize in advance. I am at my wit's end. Need to vent and need support.

Background:
I am 36, F, having surgery hopefully in Jan. to help fix at least part of what's going on. I have lots of nerve damage to bowels and bladder from birth defect. (Bladder stuff is managed ok, been treated for about 20 years from urologists.) However, I had not gotten help for my constipation and bowel incontinence problems until about 1 year ago. All my life, I had been able to sort of manage it well enough on my own. Pretty miserable and confusing life though. A year ago, constipation got really really bad, not going at all for weeks at a time, even when taking laxatives, etc. After much testing, and trying lots of meds and other treatments, docs at Mayo and at my hometown teaching hospital/medical college, they (and I) have decided to go forward w/ surgery.

I will be having a colostomy done. They found colon does work, just rather strangely. Tons and tons of very strong contractions/spikes in pressure that in a "normally functioning colon" would see about max of 4 per 24 hour period. During testing, I was having up to 4 of these in less than a 30 second period at times. Hundreds per day at least. It doesn't make sense. Docs all baffled as to why the constipation remains. We know for sure the muscles/nerves/sphincters near the end of the colon and in the rectum do not work...basically useless. Extremely poor muscle strength, coordination is not at all coordinated! So, hopes are that removing part of the colon and the rectum (leaving me with a permanent colostomy/bag) will at the very least solve my issues of incontinence, and they feel it will likely improve the constipation to some degree. Very complicated. At least then if we increased the meds for constipation, I would not have to live in the bathroom. As it is now, I have no sensation/urge/warning of a BM, it just happens whenever it wants to. Not great for a social life or any life.

I also have a bunch of other medical problems, lots of other meds, etc. When I have the colostomy surgery, (no date yet, have little more testing, and then coordinate schedules of 3 docs who will do different surgeries at same time), I will also be having a bladder sling done, a total hysterectomy, and now possibly a minor surgery to tighten up the valve that prevents urine leakage from my urinary stoma. They feel it's best to do it all at once because going back into the belly/pelvis in the future would be really complicated and much more risky.


So, what's going on now:
I take daily meds, OTC and prescription for constipation. Still, I often go without any BMs for 10-14 days, at which time I have to do a bowel "purge". That involves increasing the doses of my daily meds, plus downing 2 liters of colonoscopy prep (really tasty!) and then praying that it will work. Guess I didn't pray hard enough today. It's not doing much at all. I am miserable. Feel confident there is no blockage, but nothing will make my colon and other parts release what's inside. This sucks!

Does anyone have secrets to making laxatives or similar meds work? I try changing positions (sometimes if I lie down for a bit, I get what feels like giant gas bubbles running around inside and that seems to help, but not today), I try moving around (due to incontinence I can't stray too far from the bathroom). I try eating/not eating, increasing water intake before and during. I don't know what else to do anymore. I have been doing this "purge routine" for about 11 months now, I guess my body is just getting used to it and not responding much anymore. I feel like if I can just make it to surgery, things will change at least a bit, and get sorta shaken up, maybe it will help. At least that might be a new start to figuring out how to make my GI stuff work!

Please help me get thru the next (hopefully just) 2 months. I do consult my GI doc regularly, will contact him tomorrow and have an appt in 1 week (for upper GI issues, but obviously we'll discuss this as well.). Just running out of steam, can't keep doing this much longer. Any thoughts, advice, anything??[u


Thanks for any help or support you can offer. I would really appreciate it.


Sunny
Posted 11/28/2014 8:01 AM (GMT 0)
Hi, I will repost what I posted on another thread but first, have you explored the brain/gut connection? I had IBS for almost 4 months in 2012. It came on suddenly and made me wish I was dead for a lot of the time that I had it. I finally cured myself by exploring that aspect of it. I can see you have had a lot of issues with your health by your post and from my experience, I have found your brain can stop or make your symptoms disappear. Many people think when I bring that up I am saying it is all in your head. I AM NOT. The illness you feel is real, and is happening, but I found that in my case at least, a lot of it was triggered in my brain that sent instructions to my gut to act the way it did. For the three months that I had it, I could not go to sleep until I had just walked or worked myself into the ground until I just went to sleep from exhaustion. My IBS, that triggered severe gas and constipation made it impossible for me to lay down unless I had literally walked or worked myself into a state of exhaustion so I finally got to sleep. Then I would wake up the next day and repeat the process. I have bad knees so you can imagined how well this went over for me. I lost 60 pounds during those 3 months. I know that IBS is just and expression doctors use because they really can pinpoint what your problem actually is.

Here is my earlier post:
In 2012 I had IBS really bad, it took me 3 months to fix things, but it was the most miserable I had ever been in the entire 58 years of my life. I went from 360 pounds to 300 in those 3 months. I did figure out a cure for myself and unfortunately I have gained 40 of those pounds back. But it you are interested I will relate what I did to ultimately fix myself. When I mentioned it to my MD he scoffed, but I will relate it to you here and you can take it or leave it. First of all I first got my IBS after a weeklong bout of I believe food poisoning. After finally getting better. I just could not eat. It’s a while back but I did have bouts of feeling I was back to normal, only to relapse back in a day or two. I did a lot of research, and there is a lot that transpired but I will cut to the quick. What I did learn was the brain-gut connection was crucial here. In my bouts of feeling better, I worried so much about it coming back that it did. I learned that brain gut does not mean in your head either. Your brain triggers the real problems that are happening in your gut. I reasoned that if the brain could be made to be at peace then it wouldn't trigger these actions in the gut. What I ended up using to fix myself was a psychotropic drug, clo****pan. When I had my bouts with IBS, I tried a small dose of clo****pan, and added as needed to calm myself. Low and behold with the anxiety taken out of the loop, my IBS stopped. And no I did not continue to take the clo****pan when the IBS stopped. I stopped taking it when the IBS stopped. My IBS finally came back after 2 weeks. Again I used Clo****pan, and the IBS stopped, again this time it was 3 weeks before it came back. I again used the clo****pan, only this time when my IBS stopped, it never came back. Clo****pan is very addicting so if you try this and it does not work for you just stop trying, this is not the route for you. But it was the route for me and my IBS has yet to return. Things had gotten so bad, I started seeing a psychologist for this but it did not help, then I finally upped the ante and made an appointment to see a full-blown psychiatrist. But by the time I saw him for my first appointment I had stumbled on to what cured me. I explained it to him and the term he used was cognizant realization. In other words when my mind realized it actually controlled what was happening in my gut, it turned it off. There were a lot of details I left out that would probably take a book to go over so I left a lot out but this is basically what worked for me. Good luck.
Posted 11/28/2014 8:48 PM (GMT 0)
I too suffer with constipation with my IBS though I sometimes will have diarrhea so I'd say I'm more of an alternating C/D IBSer (that just got my crohn's in remission, so we now know for sure that I have developed IBS as well)
anyways, the only thing I find that helps with my constipation is a small amount of prune juice at least every other night, that seems to help keep the major straining at bay, unfortunately I'm still no where close to combatting the IBS battle as I still have frequency issues and some false urges as well, very frustrating.
Posted 11/28/2014 9:48 PM (GMT 0)
Cooked spinach is especially liked by my gut to keep things moving. You should also eliminate most fiber from your daily food (consider eliminating gluten for a week too and see if things are better). Some doctors think eating more fiber is the answer to regularity but in my case it creates constipation. My gut also hates all types of fiber pills except for unflavored Citrucell (also available generic). That's the only fiber it can put up with.

Hope this helps, once C is in place it's hard to break things up.
I know what you mean about not wanting to walk too far from a restroom but try Walmart, most have one in the front of the store as well as the back and we had a thread about it over on UC forum. Something about Walmart makes constipation go out the window, why we don't know, just works.
Walking definitely helps me when constipated, maybe a gym with a treadmill would work for you.

Best of luck.
Posted 11/28/2014 10:21 PM (GMT 0)
Insoluble fiber is a very effective treatment and preventive for constipation and other digestive disorders like diverticulosis and irritable bowel syndrome. - See more at: http://www.quickanddirtytips.com/health-fitness/healthy-eating/what-is-the-difference-between-soluble-and-insoluble-fiber#sthash.T2etBZhJ.dpuf
Posted 11/29/2014 1:53 PM (GMT 0)
One other idea: try drinking a glass of water with a spoonful of either lemon juice or apple cider vinegar.
Don't do this right before you have to leave the house!
Posted 11/29/2014 8:57 PM (GMT 0)
I have had chronic constipation most of my 65 years of life. I have tried so many things it is ridiculous. I have tried over the counter meds, prescribed meds, and all kinds of things that friends have suggested and say work for them. Nothing works for me. I have had to have surgery for hemorrhoids in the past. I now have a huge fissure and hemorrhoids both internally and externally. They cause me severe pain...to walk, sit, and do most anything. I have to take a lot of stool softeners, laxatives, and etc. to even have a bowel movement and even then it is extremely painful. My new Proctologist started me on Amitiza twice a day and it is not helping. Plus it costs $116.00 a month with my insurance! She also wants me to use Cortifoam for the fissure and hemorrhoids, but it costs $95.00 a month with my insurance. I cannot afford either one. She gave me enough samples of trhe Amitiza for 16 days, but so far it is doing nothing. I had better success using over the counter stool softners, Citra-cel, and Miralax, along with a laxative once a week. But still feel like I am passing broken glass when I have a BM! Horrible. I am a chronic Migraine patient, so used to tolerating a lot of pain, but I could scream when I have a BM, it is that bad. Anyone out there who has any suggestion, please tell me!
Posted Yesterday 5:52 PM (GMT 0)
I drink organic Kifir. Works great for constipation and its deliscious. I can't drink the plain but the fruit.
Posted 1/13/2015 5:48 AM (GMT 0)
Hi Petlover
As you have used laxatives for so long your bowel is now lazy.....I'm trying to stop Movicol but very diffic as been on it for over 10 yrs - I have fissure etc too and try to use herbal remedies in creams and tinctures. My newest med Pregabalin for anxiety is casuing bloating and constipation but I need to GAIN some weight! Did you try Linzess yet? it did nothing for me still had to use Senna
|Take care
Posted 1/18/2015 5:10 PM (GMT 0)
I'm truly sorry that you are having so many problems. My daughter suffers from Ibs-c and taking 2 magnesium supplements twice a day has been helpful. It usually takes about 3 days for it to work. Also, a mixture of fiber one flakes and bran buds has been a good fiber boost. I hope this helps some.
Posted 1/25/2015 3:27 AM (GMT 0)
I, too, am sorry to read of all your health problems. I have had I.B. all my life and I am a C. Diff survivor but nowhere near what you have been through.

I am on Nortriptyline and it may be contributing to constipation. It was uncharted waters for me as most of my life I had bouts of diarrhea.

One of my Health Care Providers prescribed a laxative but another said to try a tablespoon of Magnesium Calm at bedtime. I was already taking Magnesium Glycinate or Taurate, same Doctor recommended. I now use Magnesium Glycinate in the morning and I take the Calm at nighttime. A good probiotic helped my stomach after C. Diff and I believe magnesium supplements have helped also. I am on a number of meds for my other conditions and you need your stomach to work.

I have also been trying to do some deep breathing while I wait for my bowels to come out. It is better than trying to force it out.

Will keep you in my prayers.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 2/2/2015 6:23 AM (GMT 0)
Amitiza if i am right is the methylnaltexone opioid anatgonist severe constipation medication. there is an injectable version that is supposed to work for certain but i do not know. self injection of methylnaltrexone. name is Relistor. every other day subcutaneous injection. also it may sound crazy but The Ayurvedic system of India has amazing treatments for health and clearing the bowels. i think most all is safe a free of adverse effects. Trifala made with the Amla berry and two other fruits is helpful and other food/tonic products include the Trifala. i would cut back on insoluble fiber and lean on soluble fiber from methylcellulose and pectin. also a simple gel made from chia seed meal, 2 tbsp in 6 0z water for 20min. then strain seeds out and use gel in drinks and cooking for cleansing soluable fiber nutritious gel. omega-3, protein, minerals and antioxidants in the gel. also i have seen a Buffered Vitamin C "Ester-C" powder cleanse. by using a certain amount of tablespoons in distilled water, every hour until bowel movement, reduce by one tablespoon and keep going until things are flowing and use that amount in glass of water for 12 hours. it is said the ester-c has healing and antiseptic effect on colon wall and it is needed for colon health. amino acid Glutamine is vital metabolic fuel of the villi cells that absorb nutrients and pass into blood stream, N-Acetyl-Glucoseamine is part of inner lining of colon wall that can degenerate. marshmallow root and slippery elm tea and capsules are helpful. the ester-c cleanse is probably best when not 7-14 days from last BM. i wish you the best, i know your suffering. Nick
Posted 2/7/2015 11:11 PM (GMT 0)
My daughter suffers with ibs constipation. Taking VSL#3 probiotics and magnesium supplements have been very helpful. The magnesium supplements from a health food store has worked wonders. I hope that this might be helpful.
Posted 2/8/2015 4:37 PM (GMT 0)
Thanks for the replies! Sounds like I am not alone in this battle against constipation! That sucks, sorry for all of you out there suffering, it sure gets miserable.

I had surgery 2 weeks ago--colostomy and bunch of other stuff. Guts are still learning to behave, constipation still an issue, but we'll see what happens over time. Hopefully will start working better or i'll figure out a good system. Had some complications post surgery…paralytic ileus, so had an ng tube for a few days (horrible!) but doing pretty well now. Just have to get things working again. On lots of meds of course, but hoping with diet and meds and exercise, should be able to manage things much better.

Hope you are all doing well.
Posted 2/18/2015 8:46 AM (GMT 0)
Drink 200-250ml of water every 10 minutes until you go. Usually around glass 4-6 I can feel it coming on.
Posted 2/19/2015 2:24 AM (GMT 0)
Sunny13, I agree with Helicopter mom that magnesium will help you A LOT with constipation. I strongly recommend that you take magnesium citrate. Magnesium Oxide which is found in 99% of the supplements is poorly absorbed. Blood tests for magnesium are very inaccurate. The best way to know how much you need is to slowly increase the dosage until it causes diarrhea. Then you just take less than that and you will feel so much better.

Magnesium is needed for the contractions and by all muscles in general and being that it is so inexpensive, it is a cheap way to see if you are deficient.

I don't know if you have had your hormones tested. Your hormones affect your digestive tract and cause constipation.
Posted 2/26/2015 3:26 PM (GMT 0)

PetLover said...
I have had chronic constipation most of my 65 years of life. I have tried so many things it is ridiculous. I have tried over the counter meds, prescribed meds, and all kinds of things that friends have suggested and say work for them. Nothing works for me. I have had to have surgery for hemorrhoids in the past. I now have a huge fissure and hemorrhoids both internally and externally. They cause me severe pain...to walk, sit, and do most anything. I have to take a lot of stool softeners, laxatives, and etc. to even have a bowel movement and even then it is extremely painful. My new Proctologist started me on Amitiza twice a day and it is not helping. Plus it costs $116.00 a month with my insurance! She also wants me to use Cortifoam for the fissure and hemorrhoids, but it costs $95.00 a month with my insurance. I cannot afford either one. She gave me enough samples of trhe Amitiza for 16 days, but so far it is doing nothing. I had better success using over the counter stool softners, Citra-cel, and Miralax, along with a laxative once a week. But still feel like I am passing broken glass when I have a BM! Horrible. I am a chronic Migraine patient, so used to tolerating a lot of pain, but I could scream when I have a BM, it is that bad. Anyone out there who has any suggestion, please tell me!

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