# When is it time for medication



## patent123 (Mar 24, 2016)

I have been suffering from IBS-D for 2 years now. At first it was minor and only set off by certain foods. As time progressed I found trigger foods to ignore (dairy, coffee 2 major ones). Even with my eliminating triggers the symptoms became worse and more frequents. I went from a flare up lasting an hour and happening a couple times a month to now being daily. I can no longer control it by avoiding foods because anything can irritate my stomach. I was FINALLY diagnosed by my GP with IBS-D (yes I went to a GI and was looked at for chrons, UC, celiac etc...) After my GP told me I had IBS-D she gave me a medication for my intestinal spams and told me to ignore certain foods and to find out my own triggers. At the time she refused to give me medication for the IBS itself. She said most people can not afford the medication and I need to learn to control it through diet and life style changes.

I tried to avoid foods and drinks but now thats not possible since even soup and a glass of water can send me running. I really don't even remember what its like to feel normal or go a day with out worrying about if its safe to eat or where the nearest bathroom is at. I feel like I have developed anxiety because I'm afraid of an attack while away from my house and the embarrassment that can come with it.

I do take Imodium almost daily and the spams medicine maybe a couple times a week. I try and reserve that for the most painful days since she gave me limited refills.

So when did you or your doctor decide medicine was a necessary option? Did you have luck with it? Any advice is greatly appreciated. I am considering returning to the doctor or switching doctors to try and find some relief.


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## Pattijean (Mar 31, 2013)

Dear Patent 123, I feel very sorry you are going through so much pain and distress. Your progression of symptoms are similar to mine, though I seemed to go through a number of years as they progressed to the point they are now. I, too, suffer from IBS-D. Everything else has been ruled out several times over the years. I have been on a variety of meds over the years (decades, really). But before I go through my medications I first want to make a comment or two about your situation.

First, you say you were diagnosed by your GP, though you had gone previously to a GI. Didn't the GI come to the conclusion that you had IBS-D, or was that before your symptoms became worse? The fact that your GP is withholding pain medication for your intestinal spasms is just plain wrong. As a new person to this organization you will read many, many people who have been "cured" or at least have had their symptoms put in check by eliminating food/adding certain foods/living a certain lifestyle/practicing yoga/biofeedback/drinking peppermint tea/swallowing peppermint tablets, etc. There is the FODMAP group (bought the book, took part in the podcast, made the recipes). There's so many other books.....though one of the best, oddly, is IBS for Dummies....great for beginners.

I, too, learned to avoid food/drink triggers, but the more I avoided, the worse I became. I, unfortunately, did have a couple of rough spots that included hospital stays and major surgery... 2 or 3 bouts of ischemic colitis, not fun and quite dangerous and very, very painful. But the worst was a blockage which led to a tear in the colon which almost led to my death. I thought I was always having diarrhea, so how could I have a blockage. But I was given a colostomy, they took over 1/3 of my colon, and I wore a bag for several months. I was lucky in that they were able to re-sect the colon. However, given the shortness of the colon now, it is not unusual for me to be in the bathroom 8 times every 24 hours. I can eat a "low residue diet" (look it up under Mayo Clinic) and I still have to go to the bathroom within 1 to 2 hours. This means I go nowhere.....ever. Or I do not eat so I can go to a doctor's or even a movie occasionally. Yes, I always speck out where and how many bathrooms are at wherever I go. But often I cannot go somewhere because it would be too embarrassing (eg., we were just invited to go down to the shore with family and stay a couple of days, but I can't let them see me like this though they know about it....it is just too embarrassing).

Your GP's comment that most people cannot afford medicine, while perhaps true, is not his/her business for someone like you or me. You are barely eating and in pain. What you saving in food bills would pay for meds sometimes. He/She has no right to withhold meds from you with that kind of judgment call.

I have been lucky in having 2 wonderful women gastro docs for the last few decades. Back in California, after a bout on Christmas Eve while visiting my family in Michigan and landing in the hospital for 6 days and going thru horrible tests, when I returned to CA, my GP had me see this caring gastro woman who did a colonoscopy, put me on 2 meds (too long ago and I'm forgetting the names), one for milder pain and the other for bigger pain. She also discovered that I had a real curvy colon and said to tell any future gastro doc to never have a sigmoidoscopy....too painful. When we had to leave CA for New Jersey, I still had enough meds, so I didn't feel I needed a gastro person. I didn't have really major problems until one night when I thought I was going to die from pain. I made it through the night, found the name of a group of doctors (not sure from where) and the only one available was this woman. She immediately sent me to the hospital. It was my first bout of ischemic colitis. That was the beginning of my real "relationship" with IBS-D in a major way.

She put me on Lomital 2.5 mg. for pain and Bentyl 20 mg. for cramps/pain. (There is also a 10 mg.) In the earlier days she had me taking the Lomital before I went out to a movie as a preventative. Those days are gone! I, too, take Imodium, though I am on a very new medicine which says not to take it unless the diarrhea is really bad. I am also on another medicine (Librax) 3 x a day for cramps so I do not take the Bentyl at the moment.

The new medicine I am taking is called Viberzi. I am taking the 100 mg. It was just approved by FDA in the spring. It is specifically for IBS-D people and directed at cramps and diarrhea. I have only been on it for 6 weeks (1st week on 1 tab a day, 2nd week began the normal 2 a day). By the 5th week or so, the cramps seemed to disappear! It was like a miracle since I had them all the time. Over the last week I have had some cramps, bad ones, so I've had to take Bentyl in addition to the Librax, but that was only once or twice. The diarrhea, however, is still very bad. However, I have a body that takes a long time to get adjusted to new meds. Plus I have that shortened colon which adds to the mix. The good/positive thing if you look on their website is if you decide to try it, there is a possibility of getting the 1st year free or at a minimal cost. I will be meeting my gastro gal in August to see how the sample bottles she has given me have worked and whether I should stay on them. I am really hoping that this med works.

So my advice to you is GET A NEW DOCTOR. You should not be reserving the pain pills and taking them only a few times a week since the GP only gave you a few of them. You have IBS-D and need medicine to help control the pain. You are doing everything else by the book, especially if even water bothers you. (If soup bothers you, you might check if the soups has any kind of nitrates in it: all canned soups do, they also have high yeast which is not good for IBS people in general. Basically, the best is homemade broth from chicken breasts on the bone, or a whole chicken. We also use the "Pacific" brand broth in a box, but both my daughter and I get migraines from it....not sure why despite their claim to being "all natural."

I do not know of any IBS-D sufferer who does not see using specific IBS pain relievers as the way to go. Though as I said earlier, there are some who subscribe to this newsletter who have had luck in various ways. I have not, and I have tried many, many options.

Good luck to you and write back if you want.

Pattijean


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## patent123 (Mar 24, 2016)

Thanks for your response! My GI Doctor put me through all the various testing like a colonoscopy, endoscopy(hope thats the right one), blood tests and stool tests. He seemed very relaxed about the situation like I likely didn't have anything wrong. During my time with him I found out I did have camplyobactor (spelling) basically I had food poisoning. At the time we knew I had minor gall bladder sludge and then during my intestinal scoping they found I had GERD. So after all the tests I was sent home with antibiotics, told to take an antacid, and to monitor gall bladder discomfort. During that time I found out my gall bladder was no where near bad so that Dr. and I agreed to not do surgery and to monitor it. After my GI Dr. I really felt like he didn't see me as an important case. He seemed very relaxed on the situation like your issues are all due to this food poisoning. That was a big let down considering I did look into him and he had fantastic reviews. After that I decided not to go back why pay more for a specialist that looks at you like a hypochondriac.

Finally during a bad flare up I did a call in to my general doctors office. I got an opening with a different doctor who told me it sounded like I had IBS-D and she couldn't understand why the GI didn't say that. She put me on a probiotic for a month, told me to keep track of trigger foods, and told me to follow up with my regular GP. When I didn't have any improvements I want back to my GP who actually labeled me as IBS-D cursed. There she prescribed me the bentyl to use as needed but made it clear to avoid being one of those people that use it daily...why I am not sure. During that time I was VERY NEW to the ibs-d world. She gave me some other tips and sent me on my way. Today when I go back I will be seeing that original doctor I saw by chance during the call in. I definitely feel like she sees my symptoms to be as bothersome as I do and takes me more seriously.

I try to avoid Doctors because I have a whole slew of symptoms which I think could be connected to the IBS. I have been to so many specialists, have had so many tests done, and have had 0 results. I feel like Doctors look at me and see a dramatic lady. So I have spent more money then I should have and its gotten me no where. I am hopeful today that this Dr. can at least push me in the right direction. I have read of people on here who have had luck with antidepressants or anxiety pills I plan to ask if she thinks that could help at all. That would be my second option if it turns out actual IBS medication is to much to afford. At the very least I plan to ask if taking my bentyl daily would help. I have a young child at home and being confined like this because of fear of a flare up is putting a damper on my life.

Thank you for your response though it enlightened me on the subject which I do consider myself new to this even though its been 2 years now. I feel a little more brave or prepared for this afternoons appointment.

*Symptoms*

Dizziness or drunk feeling sometimes resulting in stumbling or unable to drive

brain fog

can't focus eyes

abdominal pain

nausea

back pain (constant for years now)

bloating

diarrhea

migrains

cold/heat sensitive ( during the cold I get Raynaud's syndrom, and during heat I get a heat rash on my arms)


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## lithium (Oct 9, 2015)

There is a cluster of symptoms called by some as migrainous vertigo or vestibular migraine or migraine associated vertigo. This illness on top of causing migraines also causes many other symptoms. Most common are aura, dizziness, vertigo, nausea, balance problems, brain fog, vision disturbances, anxiety, depression etc. Dizziness is a actually a very complex topic. If dizziness is debilitating then you should get it checked out by an ENT who specializes in otology (a neurotologist). I myself deal with totally debilitating dizziness due to vestibular problems.


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