Desperate For Help.....Intense Pain

I'm 64 and have had IBS for 3+ years which was misdiagnosed as Microscopic Colitis for the first year. This is my first time posting here. I am a widow and having a difficult time taking care of myself and the house. I can't go anywhere and cancel at least half of my Dr. appointments. My pain starts while I'm sleeping, anywhere from midnight to 4am. The pain is so intense that I have to talk myself out of calling 911 everyday. I do go to the ER which is right around the corner, but since I drive myself there, they can't help my pain. I've tried many of the new drugs, OTC medicines, acupuncture and the list goes on. I know this is nothing new for most of you. All of my tests & scans come back normal. I've been to 5 GI Drs. and they don't help. I was so bad that I had to have surgery to repair an anal fissure, a hemorrhoidectomy & a sphincterotomy. That's how much damage this disease can do. As a woman, I even have severe pelvic and vaginal pain. I swear, the pain is so bad and like others, I sweat and get nauseous. I thought I had IBS-C because I had to strain for anything to come out, but was told I have IBS-D because of how many times I went and the consistency. So, now I need to try another new, expensive drug when I can get to see my GI Dr. in 2 long months. I take one 10 mg Percocet every morning as soon as I can handle drinking water. I really need 2 pills a day, but so far no luck. Hopefully on my next visit to Pain Management, the Dr. will understand. I know they worry about addiction, but I'm not an addictive personality and I also get drug tested every month. The pain comes back, not as bad, but very uncomfortable. It even hurts to wear clothing below the waist. Also, I've lost most of my friends and family (the ignorant and uneducated) and that's why I have no help. My best friend that took care of me died suddenly 3 months ago. I'm on Social Security Disability and Medicare with supplemental insurance. I have no problem finding doctors, but so tired of them not knowing what to do with me. I usually know more than they do. I'm in So. CA. I'm desperate for help. I go to sleep at night thinking I won't wake up again. My parents are 94 and I haven't seen them in 3 years since I can't travel around the corner, let alone across the country. I'd rent a private plane if I could afford it. Should I start a GoFund Me account? Any help would be appreciated and I am truly sorry for all you IBS sufferers out there. Patti 😥

24 Replies

  • Join online book group

    Listen & watch old comedy,Round the Horn,Hancock and laugh out loud


    Learn to Skype

    One day at a time

  • Thank you, Maggie. I love to laugh and welcome anything or anyone that makes me smile. I do Skype, but only wish my parents could. Like I said, my parents are pretty much my only friends, but are too old to Skype. I wish my nieces and nephews would Skype with me when or if ever they visit their Grandparents. Too selfish & entitled to even think of doing something kind. My dogs make sure that they keep me busy. I also feed a zillion birds & squirrels and get pleasure watching them. Animals have replaced people in my life. But, none of these things help the pain that has ruined my life.

  • I'm not familiar with this kind of symptoms, but have you tried/discussed taking aloe Vera? X

  • What is Aloe Vera X? What does it supposedly do?

  • Private messaged you.

  • Yu and I are very similar in age and like you my problems started about the same time as yours, at least the more sever problems, as I was born with lazy bowels. The pain is the most debilitating aspect of this illness, so I try to deal with that first. I have found if I take Buscopan for cramps, helps to stop the pain in my bowels by alleviating bloating and air. Once the pain is sorted the rest I can cope with> Like you I have changed my diet and found that I must lessen any foods containing fibre, ie, cereals, kiwi fruit, etc. Try it for a while and see what happens. Also, there is an old and well used remedy that my grandmother told me to use. It is simply, a cup of hot water from the kettle every morning before you start your day. Good luck.

  • The low FODMAP diet was developed specifically for IBS by reseachers at Monash University, and if you stick to it it can really help. See for more information

    For a quick list of what to to eat and what not to eat, see


  • Thank you for the info. I tried the Low FODMAP elimination diet and goods don't seem to make a difference. I've even gone for days without eating and only drinking water. That made no difference in my pain or bathroom visits. So darn depressing.

  • Both the capsules and the water, I found the water started me off, but it got too moist then the silica capsules they calmed the inflammation, so moisture can be absorbed and stool forms, depending how long you've had this might depend how long you take to recover, I guess. Always look for steady improvement while healing. If it hurt I wouldn't have done this, Asacol/Salofalk are the medicines from hell to me, and when it says 'rarely' for diarrhoea from it. I had explosive diarrhoea, I said that I'd never soil myself again. It was nasty, messy. Also I've never tried any diets for that since I never thought food could even remotely be the cause, I'm ranting again aren't i?

  • I wanted to see a sentence, so this is out of sequence, I was thinking that UC is an allergic reaction to Aluminim. And the professor was using the SRWto test people's urine for exposure to the metal, that's how I started. It'll make you feel after a complete evacuation as if water is passing through, it did me, that's when I took the idea of the water and the silicon, and thouht of silica. Since 5ASA drugs killed me. If you go back to water straight from the faucet you might take a step back in health. Plain water is not for me, please pass this on to others who suffer as a method that might help when the drugs fail.

    Hope you find great relief! 😃

  • Hi Patti,

    I had UC for 12 tiresome years, and basically it's caused according to me by aluminium, what I did was drink a silicon rich water, Volvic, and when I felt as if was was running through, you'll know, I tried 1 silica capsule/day (200mg Lambert's), still drinking the Volvic. 1 litre/day to start with, it will taste softer, not as bitter as ordinary mains water.

    I hope this helps, the water should soften the C, painlessly. Good luck.


  • Thanks Stuart. I will definitely check out the Volvic water & silica. Lord knows, I've got the time! I need the pain to go away so I can get some sleep!

  • Hopefully, it'll calm your insides, your pain should ease, a nd with only the V. Water you might find stools getting loose, then wet, as if water just passes through, to my mind part of your intestines are still too inflamed, that means your moisture does not get reabsorbed to make solid enough stool. If it helps as it should you should have more natural lubrication, and you insides should begin to heal. It is how I made it work for me, but since I worked this method to suit me, I got there by trail and error, if it made improvements I'd continue with what worked, otherwise not. It's a sort of trail and error.

  • Trial & Error! Ain't that the truth! I've found the Volvic water, but not the silica. I'm pretty sure I searched everything yesterday. Are you in the States? I actually had a pretty decent day today and a full 8 hours last night. I'm in the process of trying, as usual, a couple of things. I've kinda learned not too get excited until after maybe 2 weeks. At that point I will share my discovery. In 3 years I've never been able to share, but not giving up. 🤔

  • That's good for the water, if it's going to work as it did with me you should find your stool getting very soft so you'll have a complete evacuation pf very soft stool, then I found that it got wet as if the water I drank was passing through with the occasional torpedo of glistening stool.

    At my local health food store they have the organic stuff and some health stuff. I'm in the UK, but try Amazon for Lambert's or Nature's Best Silica 200mg. Look up by putting 'What is silica?' in your search engine. It's an essential element, on the Periodic Table it is atomic number 14, while Aluminum is 13. It's in Health & Personal care section, there should be various types.

    So I believe I calmed the inflammation by this, because I was having the water just pass through, as I'd seen it and the water was helping, I tried that, and for me it was great. Normality resumed.

    I was fed up after 12 years of blood, mucus, C the D, the eternal circle (or should it be infernal?). That's brilliant news because I sometimes haven't heard that much back, thank you for letting me know.

    The general idea was to remove inimical (harmful) aluminum, looking at a Professor's research on the metal, I tried my first bottle and have not looked back, so to speak!

    Thank you very much for letting me know, because I never felt this will only work on me. Since I sort of only go with what helps me. See if you can't look up a Daily Mail article called 'Village of the dammed', about the Camelford Water Incident, aluminum water poisoning of a private supply, and Carol Crosse, (sp?). I'm very pleased! ;-)

    So if you're like me I could never be bothered with trying to eliminate foods that might cause UC, you either like some foods or you don't. Aluminium is to me the guilty party, why do you think there are so many autoimmune diseases now? More vaccinations, but that's heresy I know.

  • Thanks for all the info. I still have to get the water and check again for the silica. Some of the things they sell in the UK they either don't sell at all or is a prescription here in the US. I'll keep you posted!

  • <> I use the ones made from Bamboo.

    Hope this helps you!

  • Thanks Stewart. I found them. Which brand do you take & how many mgs? I've had 2 pretty decent days in a row with my experiment. If it doesn't continue, I'll add the silica. How are you doing?

  • I used Lambert's 200mg Silica capsules made from Bamboo Gum, there is some Nature's Best, but do look on Amazon health an personal care (I think) for different types/brands. Everything seems to be normal though stools don't seem as big as they used to be before UC, eating more would improve that I'm sure! I found before I added the silica caps that water seemed to pass through without being absorbed, and to my thinking that would be consistent with the concept of bowel/colon removal and a bag, that I think is so medieval. If it doesn't work cut it out, so barbaric! I don't drink mains water any more, I find it too bitter!

    So basically you should get the idea, the water (silicon rich) and silica caps (200mg from bamboo gum). Since there is nothing written about this Natural way, you have to make it up as you go! I went with the principle if it didn't help me I tried something else, but as this was the first thing I tried after Steroids, the 5ASAs are useless.

  • Thanks Stewart. You've been so helpful. Going to Amazon!

  • Sorry for late response wizzie2090, I'm getting on quite well thanks, I've been trying to write my 'concept' down, did you see any of your ulcers during a scope? Saw my last one properly after being away for a few days and forgetting any Volvic (silicon rich water SRW), I do recall seeing a line across my colon/large intestine, one half completely ulcerated the other half smooth normal looking. I thought well, it seems almost scaled, and I won't/can't drink tap water as it burns my throat. If I drink any mains water I always end the night with the Volvic that I keep in the fridge.

    The waters I've thus far found; Saka, S. Pellegrino, Volvic, Brecon Carreg (Welsh), Fiji (£££!), there's an NZ one, kaurisprings that I've not tried. Fiji has the most silicates and will taste too different, but I don't want to spend so much!

    Yes I'm so OCD about it these days.

  • My colon is perfect! Sometimes I wish they'd find something that can be fixed. So glad you're doing ok 😊

  • Hi,

    I know that you are in terrible pain, but opioids (prescription meds like oxycodone, hydrocodone or anything containing these) will constipate you severely.

    If you are straining to go, that may be part of the problem, but stopping them doesn't sound like an option for you.

    Try to lessen any straining with BM, even if you have to take stimulant laxative. The straining contributes to hemaroids, anal fissures and such.

    My GI Dr. says not to sit on the toilet trying to 'go' for more than three minutes. If nothing happens, try again later for three minutes. Any longer, and you're putting a lot of pressure on the anal area, blood flows to the area and veins enlarge causing hemaroids.

    The FODMAP diet can help, but try eliminating ALL grains. The gluten-free products are loaded with industrial thickeners like xanthan gum, maltodextrin, etc. which are terrible for people with any kind of intestinal issue.

    Google maltodextrin and intestinal biofilm. Research on this food additive shows that is enables pathogenic bacteria (pathogenic e-coli) to colonize and form biofilms on the intestinal wall of Chron's patients and may even be contributing to the epidemic of that disease since the 1950s and the advent of pre-made, packaged foods.

    Try eating low FODMAP foods that are natural. If your grandmother didn't have it available to her, then don't eat it. Bone broth is healing to the gut. Simmer any bones (chicken works well) for hours and drink the broth a few times per day. Someone else mentioned aloe. It helps me, and you don't need much. Also, increasing your fat intake can help. Not vegetable oils. Try fatty meat. Doctors tell us to stay away from fatty meat, even though the whole high fiber, high grain theory has been shown to be wrong in preventing heart disease and obesity. The doctor who proposed the theory has been discredited, as he cherry-picked populations who fit his theory and ignored other groups who existed very healthily on a primarily meat- based diet or high intake of meat, at least.

    Take care and keep us updated.

    We are all trying to help each other.

  • Thank you SO much for all the info. Some things I knew, some things I've tried and the natural fat thing I will try. I'd be perfectly fine not eating any solid food, but I know it's not an option. There's a new drug out that you can take if you have Opiod Constipation called Movantik. It worked! I stopped taking it in favor of stool softeners. I know to not stay on the toilet too long. That's why I have to get out of bed every 5 minutes during the night! My poor dogs. All I want is to be pain free. I could deal with everything else. I didn't know how lucky I was before the pain started. Would love to know why I'm getting worse no matter what.

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