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srobison

Severe IBS-D and pain in spinal area

Posted by @srobison in Digestive Health, Aug 15, 2016

Hi to all. I have been battling spontaneous and severe diarrhea along with back pain for several years. I have really no life when I go outside, see friends, no social life because of this. Latest diagnosis is IBS-D Given Viberzi 100mg twice daily. I have severe abdominal pain and block up. I also have pretty intense spinal problems. I had a spinal fusion L2-L7. I have pain and numbness, buttocks and back leg pain. I have researched and found Cauda equine syndrome, which I know you are not suppose to do this but my doctors are not ones who go beyond what they have already done. I cannot control this diarrhea, cannot stop it and I am really at the end of a pretty long rope. Can anyone share suggestions or anything. I have been to Mayo and I will come back. I live several states away. But would like to hear any comments. Thanks you, Sharon

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mamamiamandy

Posted by @mamamiamandy, May 11, 2012

I had a colonoscopy today and they told me I have IBS. I have suffered for months with episodes of violent diarrhea and vomitting. I am wondering what are some steps I can take to make this improve.

jessiecms

Posted by @jessiecms, May 26, 2012

I feel for you. I remember hearing, in a drug-filled haze, the word "normal" when I was waking up from my colonoscopy. I wanted to cry. I have severe symptoms and nothing has given me much relief. My regular doctor has been treating it (or trying to) for a few months, but I think I'll go back to the gastro to get medicine that only he can prescribe (I can't think of the name right now, but it's on the Mayo Clinic site about IBS). Lomodal has helped a bit. Have you tried it? Also, you could try Marinol for the nausea, though it makes you pretty spacy (or it did me--my doc won't give it to me anymore.) Good luck to you! let me know if you find something that works!

joyce22w

Posted by @joyce22w, Jun 1, 2012

I too have been struggling with IBS for numerous years and I left it unattended and now deal with diverticulitis. Don’t do this… treat yourself NOW!

If not taken care of you eventually will end up with some kind of surgery to remove the pouch’s that is causing the pain and inflammation.

I had what was called hand assisted sigmoid (literally cutting you open and pulling out your colon/intestine and cutting it off) in December 2009. Can I say it was easy? No. Do I feel better? Yes. Unfortunately I was advised after surgery that it wasn’t only in the lower part of the colon as originally thought I have pockets all through the colon/intestine.

I stay on a strict diet of no raw vegetables, no fresh fruit, no peanuts, pop-corn, any thing with a hull, no spice (salt and pepper are my best friend), no hot items, as in salsa, green peppers (any peppers), no salads, the list is endless. Is it hard? Yes. I have sampled a few of the above only to pay a dear price for it and it’s not worth the pain. If I chose to go back to the old habits then I chose to have all of my colon/intestine removed.

Because you seem to be in the early stages, you could follow the above listed for items not to eat a couple of weeks to get our IBS under control. Then you can slowly add an item back. If this item irritates your system mark it off the list for awhile.

Trust me; don’t be as stubborn as I was as I lived on mashed potatoes and baby food way too long. If you can get a hold of it in the early stages life will be so much better.

I wish you luck and surf the net for list of items that can help. Give it a try…..

melaniewa

Posted by @melaniewa, Jun 1, 2012

I suffered from nausea and vomiting which is now under good control. In the early days it was awful, and to begin with no one could figure out what was going on. Mayo Clinic were unable to help me, and all of my tests kept coming back normal.

I found a great physician in NC who has been able to get to the bottom of my issues (which turned out to be motility related). My doctor is an IBS specialist, Dr. Drossman (Chapelhilldoctors.com) - he is excellent. I highly recommend him and he will work with you over time to get to the bottom of things.

healthsearch

Posted by @healthsearch, Jun 2, 2012

I am a Crohn's patient that was discovered 50 years after my problem started when I was about 14. First symptom was acid in my stomach and later many symptoms including headache, pain, and memory problems. IBS have similar qualities. I learned that if you clean the liver all symptoms stops. I was treated in Italy with shots of Methionine, B12, and Vitamin K and had no symptoms for over two years. At the time I was 15 years old and now 67 and dealing with the same problems. The American doctors are uneducated in the nutrition area.
I was in The Vitamin Shop and read the ingredients and purchased a bottle for experiment and it worked great. I had a lot of problems especially lately and I am treating my self in the last few months with Liver Support Factors vitamins by Country Life. I can eat any disturbing foods and the pills makes the symptoms go away. I am looking for a doctor who is educated to know and understand that a clean liver stops most of the problems that the body have. I am also suffering from a lot of muscular pain and these pills are taken them away.

karma

Posted by @karma, Jun 9, 2012

I think you should go elsewhere for a second opinion. My son was not accurately diagnosed at our local hospital. We went to the University of Michigan where they immediately could diagnose him from his colonoscopy slides from the first hospital. Does the IBS stand for inflammatory bowel disease or irritable bowel disease? If it is the first, you need to go elsewhere soon. If it is the second, I think it is a catch all diagnosis for when they don't know what else to say. So please go somewhere else and get a second opinion so you can get on the road to health 🙂 Oops! Forgot to mention that his diagnosis is ulcerative colitis. He has had one minor and one major flare. The last one put him in the hospital for five days. When he has the flare, his diarrhea turns to blood because the colon is getting rid of its outer layer. He also develops nausea and vomiting. That is when we headed down the road for an hour drive to the university's ER. Please dig deeper for your diagnosis and do not accept fraudulent excuses for a diagnosis!

gingerlyn

Posted by @gingerlyn, Oct 29, 2016

I have had IBSD for a long time. I have tried everything except the latest medication Verbrizi, I have probably spelled that incorrectly. I have been in the hospital numerous times with vomiting and diarrhea with an added hurricane force panic attack. I finally accepted that it was not just my diet causing the episodes as I call them but stress really did play a major roll in my problem. A couple of weeks ago I started taking Prozac It has kept the episodes from sending me to the emergency room. I still have to watch what I eat and the amount since I also have Gastroparesis, which slows the food that I eat from leaving the stomach as it should but at least the Prozac helps with the panic part of the issue.I take Immodeum Plus every other day to help with the diarrhea. If I have a need to go shopping, which I try to avoid, I take an Immodeum Plus 45 minutes before I plan on leaving. Can't eat anything thing though unless I am really close to home but I usually just wait until I get back home. Trips of 2 hours or more are harder. I have to eat then go to the bathroom before I leave and not eat again until I get to my destination. There are so many of us with this problem you would think that a common denominator could be found.I don't know if any of this helps, I just wanted to share.GLM

kanaazpereira

Posted by @kanaazpereira, Oct 29, 2016

Hello @gingerlyn, and welcome to Connect. Thank you for sharing so much about your condition and frustrations; you have found a great place to share your concerns.
I moved your message to an existing discussion, where many fellow members have IBS-D. You will see your messages in Digestive Health, under the discussion, "Severe IBS-D and Pain..." I would sincerely encourage you to to read the whole discussion as it may offer some insight on treatment and therapy.

I would also like you to meet @safetyshield, @srobison, @agr205, @Pookith85, @holly5757, @cherriann, who can share their experience and advice about IBS and IBS-D. @srobison, I see that you have tried Viberzi, (eluxadoline); would you let @gingerlyn know how that affected the IBS-D symptoms?

Last but not least, I'd like to invite you to listen to Dr. Kenneth DeVault discuss Irritable Bowel Syndrome (IBS). You can also participate by asking questions; the details are posted above.
You do not need a Facebook account to be able to watch the broadcast. You will also be able to watch it right here on this page on Connect.
You can sign up for the event here: http://mayocl.in/2dBbsAg
By signing up you will receive a friendly email reminder a day before and one hour before the event.

gingerlyn, what have your doctors recommended to try and stop the diarrhea?

healthsearch

Posted by @healthsearch, Dec 5, 2016

You are absolutely right about the diet you discovered. My findings is the liver likes the special diet. The liver loves vegetables I believe because it was originally designed for the jungle. I heard people eating raw vegetables and healing a lot of ailments, but I am sure they don't have IBS. My lower back and neck pain plus Neuropathy is giving me all the signals about what I should eat. I discovered vegetables decreased the pain but bread and sugar increased the pain. I stopped consuming all carbohydrates and loaded on vegetables. Not only my pain went down but suddenly my 50 years of GERD stopped. I learned about the liver and inflammation in 1960. But last year I realized how it worked. Now I can eat some bread and get the pain and load on vegetables and stop the pain. Raw vegetables is where I observe how fast it calms the pain within one hour. I am afraid consuming raw vegetables because of bacteria but the quick effects is teaching me how the system works. I am taking Liver Support Factors pills to help the liver when I eat things out of diet and yes it helps. With the pills and diet I put Crohn's in remission that is a big job. But my stress levels also are much lower because I am not working. Keep up with your diet and avoid any processed foods or drinks. My best wishes to you.

healthsearch

Posted by @healthsearch, Dec 5, 2016

I am sorry to hear about your suffering. I discovered that the liver is in control of our health. I have Crohn's and suffered a lot but more constipation than diarrhea. The most devistating was acid stomach and reflux. In 1960 they were about to remove part of my intestines do to severe pain and five doctors said surgery in a consultation meeting. My mom took me to a doctor in Italy and he knew immediately that it was the liver. He cured me with shots of Methionine, vitamin B-12, and vitamin K. I can't explain this process to any doctor in USA since they don't believe the liver could do such thing and Methionine is not a drug. I never understood the damage bread have caused my entire life. Last year I discovered that diet is the secret to success. The liver loves vegetables but all fresh. Any item that offends the liver all symptoms are back. Most of the available foods are liver offenders. We only learn them when we get very sick. I noticed that bread, sugar, and carbohydrates increased my pain and vegetables decreased the pain on my neck and lower back. For many years I was told it was arthritis but now I know is the liver. Since your system is in more trouble than normal you have to make sure your food is blend and mashed. Including fruits have to be cooked and eat as compote. I remember rice controlled diarrhea but it is also carbohydrates. Just be aware that your stress levels and food diets is causing the problems most likely. Also medication can offend the liver and doctors are not paying attention to it. There is so much new knowledge out there in the cellular level they are forgetting the functions of the liver. Exercise, blend foods, vegetables, protein (fish, chicken, or non fat meat) eating together will improve your health in days. Vegetables should be cooked and put in a blender to mash it. Nothing processed should be eaten. Just fresh vegetables and fresh meals. No soft drinks just herbal tea and water. Avoid coffee until you feel better. I have put Crohn's in remission and you should control IBS. One small wrong item will cause a flare up so be aware of it. I am now using flaxseed to control my intestines and it makes them work perfectly well since it is fiber. You have to wait until the diarrhea stops. Avoid bread and sugars for the recovery duration. Once you are better than introduce them one at the time and check if it is offensive to your system. Vegetables are: zucchini, brocoli, cauliflower, spinach, asparagus, and no bell peppers, onions, and garlic until you recover. It is amazing how sensitive the system is and how fast it recovers. If doctors had to pay for medication out of their pocket I am sure they will recommend to eat more vegetables. Please take very seriously what you consume. You have offensive items in your diet plus stress plus lack of exercise. I hope I gave you a direction to understand the source of our health.

colleenyoung

Posted by @colleenyoung, Aug 15, 2016

Hi @srobison, welcome to Connect. I'd like to connect you with other members talking about the issues you raise here. First meet @agr205 @Pookith85 @jeanie26 @keysgull @bobsconnect @holly5757 and @missie who can share their experience and advice about IBS and IBS-D.

You may also be interested in taking part in these discussions:
- Cauda equina http://mayocl.in/2aWudfX
- Spinal fusion http://mayocl.in/2bbREQi

What have your doctors recommended to try and stop the diarrhea?

srobison

Posted by @srobison, Aug 15, 2016

Over about a 2 year period, I have been prescribed so many meds, which have not worked. Probiotics, the FODMAP eating plan, and a whole lot more. Finally trying Viberzi, a new script for IBS-D. 100mg twice daily. Not really helps. I do have bad spinal problems. L have had spinal fusion, L2-L7. I have cervical stenosis and need something done with that. I feel all of that has a lot to do with my diarrhea. I have a feeling my spinal problems have a lot to do with this, but I feel the doctors have gone as far as they want to.

snooky0925

Posted by @snooky0925, Dec 6, 2016

Have you tried eating gluten free combined with fodmaps. I have suffered for many years with IBSD. The last 10 years became impossible diarrhea for months with no relief along with severe abdominal pain. Once I started the gluten free with fodmaps life looked a lot better. I can not tolerate vegetables or fruit on a daily basis. Once in a while I can do it without too much discomfort. I usually have sweet potatoes with a protein for dinner and eggs and gluten free bread for breakfast sometimes gluten free oatmeal. Good luck

shirleyfoggepiazza

Posted by @shirleyfoggepiazza, Dec 6, 2016

I have IBSD and recurrent CDIFF for nine years due to mistakes by Physicians in Gastroenterology and ID in FL. For real treatment I have to go to NY or MA. Not familiar with Viberzi. Does anyone have Zinplava information. Will Mayo Clinic offer it in 2017

falconfly

Posted by @falconfly, Dec 6, 2016

I was tested for gluten and they ruled it out....thank you tho for your summary...it all helps and I will keep it in mind...

shirleyfoggepiazza

Posted by @shirleyfoggepiazza, Dec 6, 2016

Even though I have not tested positively with a gluten issue, it is my experience that most digestive issues be treated as gluten free, no matter what. I was given whole wheat English muffins today and froze knowing it would cause bloating and aggravate all my intestinal problems

kanaazpereira

Posted by @kanaazpereira, Dec 7, 2016

Hi @shirleyfoggepiazza,

Zinplava was just recently approved by the FDA in October 2016; you can read details about it here: http://wb.md/2gch6vq

Although we cannot comment on Mayo Clinic's timeline for using medications, Mayo Clinic, Minnesota has been recognized as the best Gastroenterology & GI Surgery Hospital in the nation for 2016-2017 by U.S. News & World Report.

yyyy

Posted by @yyyy, Aug 16, 2016

Are you sure you don't have H -pylori?

srobison

Posted by @srobison, Aug 17, 2016

I have had so many fecal tests and all come back with nothing. Do not know if this was part of those tests.

falconfly

Posted by @falconfly, Dec 6, 2016

Tested negative....

kidbjp

Posted by @kidbjp, Aug 16, 2016

Has you ever thought about an ileostomy?

srobison

Posted by @srobison, Aug 17, 2016

Have not had this. Please explain. Thank.you.

kidbjp

Posted by @kidbjp, Aug 17, 2016

This is not a test it is a surgical procedure. The patient has an ostomy bag after where the stool is diverted to rather than the rectum. You can google the procedure and get a more in depth description and so on. Hope this helps

yyyy

Posted by @yyyy, Aug 17, 2016

Have you been tested for c-dif

srobison

Posted by @srobison, Aug 17, 2016

I do not know but will see if any of the tests included this. Thank you.

shirleyfoggepiazza

Posted by @shirleyfoggepiazza, Dec 6, 2016

I have.....

jeanie26

Posted by @jeanie26, Aug 17, 2016

I have had IBS-D for over 20 years, I have had tests after test and they still diagnose me with IBS, I am taking Atropine 0.025/ Diphenoxylate 2.5 mgs. which has helped, but only for so long. I spent last Tuesday night in the hospital with severe diarrhea. I was of course dehydrated, and my potassium was very low from loss of electrolytes. It has been an on going battle, I use adult disposable pull ups, and that at least gives me a little security when going out. I like to wear my own under wear over top, it just makes it feel better. Stress plays a major roll in IBS-D as well as the foods we eat, however, as for me the type of foods I eat really makes no difference, I can eat 1/2 a peanut butter sandwich and I am headed for the bathroom. I do know that fruit and vegetables seem to trigger it most. I have found personally that if I take my usual medication for awhile then switch to something else for awhile then back to my usual, that seems to help also. But for the most part, finding what works for you is the only way to deal with this stuff. If you get the pull ups, I have found that Food lion has a brand called Healthy Accents that are very good and very reasonable in price. The truth is there is no cure for IBS, all you can do is treat the symptoms. Find what works for you, and use the pull ups for more protection. It wouldn't hurt to avoid stress as much as possible and be aware of what your triggers are. As for your back problems, I too have back problems but the two are not related. Having back problems does not cause IBS and vise versa. I wish you all the luck in the world, you CAN learn to live with IBS.

srobison

Posted by @srobison, Aug 17, 2016

Thank you so very much. This does help to understand more about IBS-D. You have been very helpful. It can just hit me without warning even watching all that I eat. When you think itI is calming down, well here it comes. I try and be very mindful of the stress and boy is that stressful. You take care and I do want to hear from and I will be gathering all information I can get to proceed further.

cherriann

Posted by @cherriann, Sep 1, 2016

I've had IBS for many years. I've taken different meds in the past, but the last five years I've stopped taking prescription meds and daily eat the following: 1 serving of probiotic yogurt mixed into 1/2 cup fiber cereal in the morning, and five 0.52 GM caps of psyllium before bedtime. I use to have frequent bouts of diarrhea, and have reduced episodes greatly. My doctor hasn't needed to prescribe any meds for me, and though I still have periods of pain associated with IBS, at least I don't have to deal with the diarrhea issues like I once did. I don't know that this will be helpful for your particular case of IBS, but perhaps something to discuss with your doctor as a possible option to try.

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srobison

Posted by @srobison, Sep 1, 2016

THanks for the info. I do see my doctor tomorrow. I have diarreah, when it starts, at least 6-8 times, nauseated and just miserable. HAve pain. I do have a very interesting thing i do. I can feel a trigger, like a sneeze, after that i have nausea and diarreah. I know its weird, but this really does happen. I have been on Verberzi, a new med, for the IBSD. IT helps, i guess, but i get constipated. So I see my doctor tomorrow. AGain, thanks for the info

srobison

Posted by @srobison, Sep 2, 2016

Well, i saw my Primary today and not much happened. Felt very down after. WE talked and I really thought he understood. His nurse made me an appt with a gastro doc. IT would be Sept 29. Okay that's a long time when you are dealing with IBSD and pain. The gastro doc is one who is not really liked and is "rough with people". I called to get anoher gastro doc and they did get me one but now it is Oct 13. I am really tired of dealing with this.

cherriann

Posted by @cherriann, Sep 2, 2016

Sure understand your anxiety and feeling "down", as that is a long time to wait when having pain and all the other issues you are experiencing. Would the gastro doctor possibly have a 'call list' you could be put on to get in sooner if another patient cancels and there'd be an appointment opening. I've put myself on a call list quite a few times and had good luck getting in for an appointment sooner. And, GOOD FOR YOU, in requesting another doctor when you weren't comfortable with the one first found for you!! So important to have doctors we can relate to and are understanding of our health issues.

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srobison

Posted by @srobison, Sep 14, 2016

Good morning to all. I did see my new doctor and they listened, asked questions and seemed sincere. A endoscopy and colonoscopy is scheduled for the 23rd. They are also scheduling a test wherein i swallow a radioactive "pill". This should take about 4 hours. SO I Feel content that something is moving other than my bowels. I will keep you updated. You have all been tremendously helpful and supportive. Thanks to all.

falconfly

Posted by @falconfly, Nov 27, 2016

Hi...I haven't been diagnosed with IBS, but reading everyone's posts, it sounds like what I have. The prescription that helps me more than anything for diarrhea is diphen/atrop generic for Lomotil 2.5 mg...I has saved me more times than I can count..

safetyshield

Posted by @safetyshield, Nov 28, 2016

For as long as I can remember as a child I was given lomotil when I went away to college and was studying I read that lomotil can cause depression. This was a shock to me since I had taken it for years. So I stopped it myself and went to a store none prescription brand. It worked for awhile until I was in my 50's when I was diagnosed with IBS with diarrhea. My gastroenterologist told me to up my dose of fiber to twice a day. I get this from over the counter at my drug store and it seems to work metamusol. I am on dicyclomine and amitriptomine as well

kanaazpereira

Posted by @kanaazpereira, Nov 28, 2016

Hi @falconfly,

Welcome to Connect, and thank you so much for sharing the information.
Have your doctors explained what is causing the diarrhea? Are there any other symptoms (common to IBS) that you experience?

falconfly

Posted by @falconfly, Nov 29, 2016

No. I had a colonoscopy and checked inside my stomach and said it was somewhat inflamed.but ok..I never got to see the doctor who ordered it afterwards, but the doctor I saw just gave me a list of food I should and shouldn't eat...Actually, that doesn't seem to make much difference..It seems to be more when I eat than what altho I do watch certain foods. The other day when I had been having bouts for a couple days, I drank their medicated bulk drink twice, ate nothing but rice, bread and applesauce, decaf tea with honey. I got up the next morning and had two sips of the cold tea and within 10 minutes I had diarrhea all over the bed, the floor and my wheelchair. I was devastated.

healthsearch

Posted by @healthsearch, Nov 29, 2016

I am so sorry to hear about your health issues. Please review Drberg.com utube recordings to understand health problems. Rice and bread are the sources of inflammation and pain. Actually sugar is, but since the system converts all carbohydrates into sugars they are the source of the problems. Also all processed foods, can foods, spicy foods, preservatives, and flour products. This is just to heal from all problems but later you can add them to your diet once you are healthy. The health secret is to consume a lot of vegetables with protein (fish, chicken, and meat). Vegetables are broccoli, zucchini, cauliflower, celery, some carrots, spinach, asparagus, tomatoes, and other items that are helpful but not offensive. Fresh fruits but no cakes. If you eat a pizza and have stomach problems look at the ingredients bread and processed tomatoes paste. Not the cheese as much or fresh tomatoes. Bread is a health destroyer and I consumed it for 70 years. I removed all the flour products and carbohydrates from my diet and reversed all my health problems. Including put Crohn's in remission. Sugar is the source of depression also.
I hope I gave you a new direction to take it seriously. You should heal in couple of weeks at the most. Otherwise there maybe other problems where a doctor must help you.

safetyshield

Posted by @safetyshield, Nov 29, 2016

falconfly before I went to my doctor right after I act my first food of the day I would also get diarrhea. My doctor gave me medication and it worked. In 2011 I was not able to eat much at one time because it felt as though my food would stay in the chest area and would case pain. I knew I had a hiatal hernia but by then I was getting such heart burn with the poor diagestion I went to see a surgeon who recommended surgery to fix my hernia. I heard from other people that once you have the operation. I would need another every 4 years. But this doctor said if you eat smaller portions and each 4 times a day. I would not need another operation. So for a month after the Surgery I ate for a week only soup than meansed meat and than I worked up normal food but with smaller portains throughout the day. So far so good. So maybe watching your food intake and eating smaller portions could help your diarrhea.

falconfly

Posted by @falconfly, Nov 29, 2016

Thank you. What medication did your doctor give you when you had diarrhea after eating the first meal of the day as I have that trouble also. You said it helped you.....

safetyshield

Posted by @safetyshield, Dec 1, 2016

falconfly I was told to have a fiber drink in the morning and evenings Metamucil and I had yogurt as well in the evenings as well as medication amitriptoline once before bed and dicyclomine an hour before eating these combinations have worked so far no diarrhea. Talk to your doctor about the meds the others are over the counter,

falconfly

Posted by @falconfly, Dec 3, 2016

amitriptyline is an antidepressant, right? Interesting

safetyshield

Posted by @safetyshield, Dec 4, 2016

Falconfly I looked that up and was surprised to know that amitriptyline was an antidepressant but I use it for IBS

falconfly

Posted by @falconfly, Dec 4, 2016

Well, I definitely know that I have the "d" problem when I get bad news, or someone is coming to visit or a million other things that really upset me or make me nervous so maybe that makes sense!

johnnyzee3

Posted by @johnnyzee3, Dec 5, 2016

Also relieves neuropathic pain, but caused me to sleep for 12+ hoursevery night, which is the only time I'll take it.

safetyshield

Posted by @safetyshield, Dec 5, 2016

falconfly if stress, certain company or bad news causes my IBS-D than I would be on the pot all day. Good luck

falconfly

Posted by @falconfly, Dec 3, 2016

Thank you....I will certainly look into that

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