# IBS-D, GETTING WORSE AND NEED SOME ADVICE



## jason haberland (Jun 28, 2004)

Hey gang!I have had IBS-D for 4 years and it consists of cramping, urgency and d with no consistency even with lomotil and immodium! I tried the Calcium for awhile and it worked for 2 months and then it stopped, I have also tried Bentyl and Levsin and it did nothing. I have remained loyal to immodium but I feel I have built a tolerance up and now I take about 6 a day. I also take lomotil and am very frustrated and sick of this! I am going to my GI doc in a couple of weeks and I was wondering if anything else is out there that might help me out? Any advice would be greatly appreciated and thank you.


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## Guest (Jan 8, 2008)

Hi sage1979,Lomotil, I was prescribed them about a year ago. Didn't have any side effects but think I was only taking at most, 4 lomotil 2.5 mg tabs per day... the prescription said, 1 or 2 as needed 4 times a day. Glad too hear you're from the East coast.. so am I, Nova Scotia... you? You most likely are in the US... Bentyl! Here in Canada it is called Bentylol. Had those before in 20 mg tabs.Currently, I am taking dicetel 100 mg 3 x daily for IBS, effexor 75 mg & amitriptyline (before bed) 10 mg to calm my stomach down, ativan & buscopan for the abdominal attacks I get usually every other day and the occassional loperamide (Imodium) for "D". I have never, ever taken 6 in a day though. I am being weaned off morphine now as well, as I have other complications; pancreas, liver & gall bladder damage. Sometimes it is hard to tell if the IBS is causing pain or my organs. I have had IBS for nearly 30 years now. Oct/06 my pancreas went acute and a MRI/CT scan revealed other damage. Plus, my portal veins in my liver were thrombosis (clogged). Since this, my IBS-D has dramatically increased.I am not keen on alternative medicines though, I read a lot about the probiotic "Align". It's all in the Probiotic forum. I bought some OTC probiotic (2 billion active cells) but my disability health consultant says I'm throwing my money away. She recommends the 20-35 billion kind found at most health stores in the refridgerator, but they are very expensive. "Align" is only available in the US and I hear is reasonable ($1 per capsule) thus, most likely try it as soon as I get rid of my OTC stuff.I also take 1 tbsp of Metamucil/Benefibre a day and maybe some grounded flaxseed as well. I take a multivitamin and alternate between 1,000 mg of salmon & fish oils and 10,000 IUs of halibut liver oil... both good for Omega-3. For breakfast I eat either All Bran or Raisin Bran usually.Hope this helps sage1979, I do hope that you're not suffering too much but, you can probably identify with rocking back & forth on the toilet trying to get relief. Keep the faith!Tony (nice guy now living in rural Saskatchewan (Prairies), Canada)


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## byron (Nov 23, 2007)

Have you tried tylenol and codeine ...I use it to control diarrhea ..I have ibs/c ...most of the time ..I pop one before I go out just to be on the safe side ...I have a friend who has severe diarrhea..and he takes them several times a day ....and eats lots of rice ,,,and pasta....it will also help with pain in your abdomen...good luck ...don't forget your yogurt


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## jason haberland (Jun 28, 2004)

Thanks everyone for their responses! I am hopeful that I can take something other then immodium and lomotil! I wish they would come up with something that would help my stomach and make me "normal" again! I would love to be able to sit and eat dinner and not have cramps/gas for the rest of the night!! Anyways, I am going to start listening to the IBS Audio tapes again!


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## Fuzz (Jan 9, 2008)

I don't know if this will work, I haven't tried it, but I've heard from many that its fantastic.Bee Propolis, I believe its mostly effective with those for Chrones, but Chrones and IBS D aren't too far separated. I think that I might actually have Chrones, I'm not entirely sure, but I'm hoping that it helps. Maybe you could give it a try, its very inexpensive.


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## jason haberland (Jun 28, 2004)

Fuzz,Thanks for the update, what exactly is Bee Propalis? I have never heard of it and was wondering what exactly it is?


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## jason haberland (Jun 28, 2004)

what is the traveler's diahrea drug called, I'm going to mexico on mon?


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## Scorchedpath (Sep 17, 2007)

Rifaximin is the traveler's diarrhea drug. I think the brand name is Xifaxan. I have taken two courses of it for IBS-D. The first time worked extremely well. Made me feel normal for about three months. The second time it did nothing. It is very expensive but because it is gut specific, it does not have a number of the side effects of other antibiotics. I believe that some doctors will advise you to take it before you go as a preventative. I know if I were travelling to Mexico, that is the first thing that I would do.


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## ssstinagail (Jan 17, 2008)

I have tried the Rifaximin (sp?), which made the diarrhea worse (2 a day for 30 days) followed by a month of Align. That was the worst 2 months of my life!! The diarrhea was horrible with unbearable cramps. My doctors seem to be on the same idea that they don't want to give me ativan or narcotics to control pain. I take Lomotil (2 pills @ 2.5 mg 4 times a day) which help sometimes, however I still have bouts at least one time a day. It makes my husband laugh that if I don't go at least once a day I think I am constipated. He says "normal" people don't go everyday. I have had an ileus after a surgery, even though my diarrhea was 10 times a day it was only water. They had to do a colonoscopy to remove the blockage. So....I figure even though I sometimes quadruple a doseage, I do what I have to do to lead a "normal" life. My doctors tell me that even if I quadruple a doseage, as long as I am still going, it is okay. But, I need to make sure that if I stop going to stop the medication. That has never happened. I have read a lot about Lontronex, but haven't found a doctor that will prescribe it to me because of the dangers. I am currently looking. The only miracle drug I have found is Lexapro, which has helped with the cramping, not the diarrhea. While on this, I have been able to discontinue the Levsin sublingual (only as needed), Levsin 4 times a day, Bentyl 4 times a day. I am still taking the Lomotil 2 pills 4 times a day and pepto (not sure, just gulp from the bottle.) Good luck finding the miracle cocktail that works best for you.


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## Guest (Jan 21, 2008)

Hey! I'm 15 and am severly lactose and tolerant and have severe IBS. My IBS has gotten worse too. It is a miserable feeling and I have started to not go out as much. My doctor put me on Bentyl too but I got the side effects and no it doesn't work. I got extremely blury vision while on it and my mouth would get so dry that all I would want to do Is suck on an ice cube all day. Nothing has really worked for me either right now. I'm sorry to hear that yours has gotten worse as well though. IBS is a scary thing and has begun to ruin my life. Good Luck to you and tell me if you find anything that works. I'm beginning to get tired of everyone(except my family) telling me that my IBS is all in my head. -Sadie


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## overitnow (Nov 25, 2001)

Hi Sage,I have been almost 10 years without d after 10 years with it on a daily basis. I use a flavonoid complex which has controlled it for so long that I pretty well am a "Normal" again. There is no guarantee that it will work for you, but also no guarantee that it won't. If you want to try something else, drop me a line and we can talk about it.Mark


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## RxPlease (Jan 20, 2008)

Hi Sage:I feel your pain. When I tell people that I haven't had a solid stool in over 2 years, they look at me like I'm exagerating or like I'm nuts. The funny thing is this: I never had a stomach issue throughout my entire life. I'm now 30 and at 25 I went in for an easy out-patient surgery. I came out of theh hospital contracting an almost lethal strain of E-coli. Becuse of the E-Coli, I was hospitalized for a week with a very high dosage (drip) of cipro - antiobiotic, which I believe, totally cleaned out any bit of GOOD bacteria in my entire digestive system. It doesn't matter what I eat, I have to immediately go to the bathroom. The urgencies are now out of control and any kind of nervousness or minimal amount of stress blows my stomach up. I NEVER used to be this way. My career involves trial preparation and I have always had a stressful job (somewhat). Never bothered me until the last 4 years of my life - after I had this botched up surgery that nearly killed me. I too have built of a resistance to immodium - and all the medications you mentioned do not work for me. Sometimes I have such an "attack" I can barely make it to the bathroom. I feel like an old woman. I'm a 30 year old educated woman; i'm very much involved with my community and used to be very active. In my early 20s I used to model and and spent alot of time at public functions - now I'm afraid to leave my house or office. It's very sad - what a way to live. Okay, so here is my regiment:1. I take the following daily: Align (over the counter probiotic). I've taken other probiotics but this is proving to be effective. I also take benefiber with a cup of tea everyday. I don't overeat - all my foods are fresh and healthy; no sweets, no fried food, no pop; no junk food. Needless to say - I feel hungry most the time, because I'm afraid to eat anything/2. I've had a colonoscopy test, food allergy tests,Cdif tests, paracite test, etc. They don't know what's wrong with me.3. When I go anywhere (like shopping), I take a mild dose of Xanax. Once again - something I never had to do; but I'm so nervous to leave the house anymore, because of my "bathroom issues" that I need to almost sedate myself before I go anywhere. 4. Exercise helps - even a mild form. Even if you have to do it in your house between bathroom breaks - try and do a little - it tends to help me. 5. I mediate at night by trying to convince myself that I'm 100% well and IBS-free. This, of course, was my LAST resort. I figure since everyone things it's psychological anyway, that I may try to give into that idea by creating my own remedy of trying to hypnotize myself out of it. This really hasn't worked - I've never suffered any kind of emotional disorder; so I don't know why I've been told this is caused by depression or stress, when I never feel that way. The only time I've ever felt stress is AFTER i started suffering from IBS and had to WORRY all day about where the heck the bathrooms are and can I make it to one without having a very embarrassing accident.SIGH - I feel for everyone in this group - my heart goes out to all. This is a miserable way to live - but I'm determined to get to the "bottom" of this! No pun intended!


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## RxPlease (Jan 20, 2008)

That's interesting - because anytime I take Tylenol PM, I don't have an episode the following day. AND I have episodes EVERYDAY ALL DAY. The only draw back there is the constant dosage of Tylenol PM isn't very good on the liver/kidneys. I wish someone could just take all my insides OUT. UGH.


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## Law Student (Apr 22, 2000)

Have you considered asking your practitioner about tincture of opium? Of course this is a heavy-duty, last-resort medication not without risks (e.g., physical dependence (tolerance), psychological dependence (addiction), and narcotic bowel syndrome, to name a few). Opium tincture is a Schedule II drug under the Controlled Substances Act, which means it is highly abusable and monitored by the DEA very closely; no refills are allowed (you need a new prescription every time you fill the medication). But if your quality of life is impacted such that you cannot function in everyday situations, in my opinion the benefits outweigh the risks.Opium tincture contains opium alkaloids, the most important of which are morphine and codeine for antiperistaltic purposes. Opium tincture contains the equivalent of 10mg per mL (or cc) of anhydrous morphine, along with a smaller amount of methylmorphine (codeine). The doses required to control diarrhea are generally much lower than those required to achieve analgesia. Accordingly, if used properly at small doses, opium tincture does not produce a "high" typical of the opioids.The usual starting dose of opium tincture is 0.6mL up to four times a day. The dose may be titrated upwards or downwards as required. There is no ceiling dose of opium tincture; refractory cases (e.g., diarrhea associated with advanced HIV disease or chemotherapy) may require as much as 8mL a day in divided doses. 0.6mL is basically equivalent to 10 drops of tincture; these are usually instilled in a glass of water and drunk 3 or 4 times a day until diarrhea subsides.As I mentioned above, there are risks of dependence (both psychological and physical), but these are rare at the recommended doses. And narcotic bowel syndrome, while quite uncomfortable, is completely reversible upon cessation of the opioid. Clonidine (Catapres) has been shown to aid the process.I have used opium tincture for 6 years. Prior to that, I tried every antidiarrheal modality available to no avail. Some medications worked some of the time, but opium tincture has worked in every instance. I take 1mL in the morning before breakfast and 2 mL in the evening before dinner. I have no side effects (other than cessation of diarrhea). Opium tincture is not a magic bullet; as I've said there are risks. But the drug has allowed me to live a relatively normal life after being paralyzed by diarrhea. Before the tincture I almost dropped out of graduate school and could not work except from home. I was afraid to leave the confines of my home due to the urgency of the diarrhea and nearly had several accidents in public. I did have one accident in private while hiking, and that was enough for me. I have held a professional job for the past 5 years and have rarely been bothered with diarrhea. If your GI doctor is unwilling to prescribe opium tincture, another alternative is codeine (either alone or in combination with acetaminophen as Tylenol #3, etc.). Codeine can be very effective for controlling diarrhea and is less prone to dependence than opium or morphine. Unfortunately, codeine works OK for me but I find the side effects are far worse than those associated with opium tincture. Codeine makes me itch terribly and it causes mental cloudiness at the doses required to control diarrhea (30mg or 1/2gr.). The only side effects from opium tincture were drowsiness during the first two to three days of starting or resuming therapy (I've stopped taking opium tincture many times, especially when I've had to travel abroad, as opium is illegal in many countries even if prescribed by a doctor in the US).As I've stated throughout, opium tincture is not without risk. But in my case, the benefits greatly outweighed the risks, as I lead a fairly normal life nearly free of diarrhea. Of course you should discuss the specific benefit/risk issues with your practitioner. Opium tincture is contraindicated in patients with prior history of alcohol or substance abuse, and is useful for IBS-D ONLY. If you have any tendency toward IBS-C, severe constipation can result from taking opioids (or any other antiperistaltics, for that matter). Best of luck to you.


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## jason haberland (Jun 28, 2004)

I really appreciate all the input and especially like your post RXPLEASE! Myself, I'm only 28 years old! I think that anxiety is something that plays a huge role with my ibs. I do think that I was building up gradually to immodium and then 2 months ago I got a bad sinus infection and took antibiotics for 3 weeks. I had a horrible flare up one morning driving to work and was stuck on the highway in bumper to bumper traffic when I had to go bad!! I turned off the highway into a town I had never been (over an hour from my house) and was in a very rural community with no bathroom in sight! Luckily I ended up pulling to the side of the road and took my toilet paper out of my trunk and ran into the woods! It was like living 200 years ago but it saved me from an accident! I believe this incident really set me back and my anxiety got a lot worse about having attacks! IBS -D for me has been manageable with immodium and lomotil and when you factor in anxiety, it gets worse. I just started taking Psyllium husks today and am going to the GI in a week! I think I am going to ask the doctor to put me on some anti anxiety drug so that my worrying will stop, I was on Lexapro 10 mg but stopped taking it! What do people take with colitis or chrons and how does it help them? I don't believe I have colitis or chrons but wondering what helps them out?


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## Law Student (Apr 22, 2000)

It sounds like you do not have a clear diagnosis -- you should have a colonoscopy and endoscopy if you haven't already to rule out serious diseases and disorders, such as ulcerative colitis, cancer, or Crohn's disease. Chrohn's is generally thought to be an autoimmune disorder, so the treatments recommended for the disease differ greatly from those for IBS. Anticholinergics and Lomotil, opium tincture, or codeine are used to relieve diarrhea and cramps. Metronidazole has been used as well. Corticosteroids (prednisone, prednisolone, etc.) are used for acute CD. Ulcerative colitis treatments include anticholinergics or low doses of antidiarrheal agents, including those for CD, but they must be used with extreme caution because toxic megacolon can result. Hydrocortisone enemas, 5-ASA (Pentasa) and sulfasalizine are also used.Antianxiety drugs may help you relax, but they will not stop diarrhea. I've tried valium, xanax, and other antianxiety drugs -- sometimes they help slow down an attack of IBS-D, but they did little to stop urgency and D. That's not to say they wouldn't help in your case. Remember, however, that benzodiazepines (such as valium and xanax) are habit-forming and you can build a tolerance to the medication rather quickly. Of course, opium tincture is habit-forming, but not in the same manner. Abrupt withdrawal from long-term benzodiazepine use can cause rebound anxiety and insomnia or seizures.You could try a combination medication such as Librax, which contains an anti-anxiety agent (the benzodiazepine Librax) along with an anticholinergic. I've had mixed success with Librax. Since my main problem was diarrhea, I wanted a medication that treated that symptom. I did have anxiety that accompanied the attacks, but I found that if the D was under control, I did not feel as anxious, and did not need to take benzos.


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## jason haberland (Jun 28, 2004)

I had all the tests done in the fall of 2005 and they all came back negative! I don't have Diahrea all day, I usually only go 1 or 2 times a day! Like I said my biggest problems are anxiety, cramping and bloating after I eat and I feel that I have to take more and more immodium because I'm building a tolerance? I feel if I can get my anxiety in check and find something that will "calm" my stomach down then I ill feel a little better. I started taking psyllium the other day along with acidopilis with immodium and lomotil? That's it for now and thanks for the advice


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## Tawn RN (Jan 28, 2008)

I have suffered from IBS-D all my life. I've had numerous tests, everything looks "fine."One time I got an attack while on a sailboat. I can still remember the agonizing pain and fear I wasn't going to make it to shore. (I did, but barely.)In the last few years, my IBS went wild with bouts of excruciating pain and diarrhea several times a day, as opposed to a couple times a week.This is what worked for me:1) I started taking a nutritional supplement called *L-Glutamine*. That stopped the attacks but I have to take every day, if I miss the attacks start back up again. You can buy L-Glutamine from a company called Vitamin Research Products. www.vrp.comIt truly has been a life saver. (I found about it this supplement from Dr. Perricone while reading his book The Wrinkle Cure. He suggested it for IBS.)2) I eat the new yogurt called Activia. That also helps.3) If I have an attack, which is very rare these days, I will take 1/4 of a Percocet or 15 mg Codeine and that calms everything down for a couple days and relieves the agony. Unfortunately, Narcotics really help IBS but you can't resort to taking them every day. You don't want to become an addict.Hope this helps!


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## jason haberland (Jun 28, 2004)

Tawn,Thanks for the update! I have been taking Psyllium twice a day and have noticed my stools have been much firmer! It's only been 2 days and I know it's not long enough, but I have had less cramps! Anyways, what is Percocet and where do you get it?


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## jason haberland (Jun 28, 2004)

Tawn,Also why L- Glutamine, I have never heard that it helps with IBS-D?


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## Tawn RN (Jan 28, 2008)

Percocet is a narcotic, prescription only medication. I've found I only need 1/4 a tab, if I took the whole tab I would be out of it all day. You only need a small amount to "cool" down an attack. Any narcotic will work because they slow the motility of the gut, which is a problem with IBS-D. The gut is overactive and spasming. This is a temporary fix though. L-Glutamine is an amino acid (a building block of protein) that is a precursor for neurotransmitters. They talk about why it works on this website (I am not affiliated with it, I just did a GOOGLE)http://www.ibs3000.com/ I take a 500 mg tab of L-Glutamine once a day. I can almost say it cured me of IBS and like I said, I have suffered all my life. I tried the things doctors recommended like Psyllium. That did nothing for me. Doctors don't know about things like L-Glutamine because it's not a drug. It's a nutritional supplement. Doctors don't study up on nutritional supplements.


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## jason haberland (Jun 28, 2004)

How does L-Glutamine work for IBS-D and why do you think it stops the D? I have never heard of it once working for IBS-D?


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## overitnow (Nov 25, 2001)

I used the search function for L-Glutamine and came up with almost 1000 entries.http://www.ibsgroup.org/forums/index.php?&...mine&st=975Happy reading.Mark


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## Tawn RN (Jan 28, 2008)

I forgot to mention one other thing. When you have just bloating and gas you can take two capsules of activated charcoal. It is sold in drugstores as Charco Caps Dietary Supplement. Get the pure charcoal formula, not the homeopathic version, it doesn't work as well.Charcoal absorbs gas, toxins and relieves colicky pain. It does not help with diarrhea or the severe pain that goes with it. Don't take the charcoal within hours of taking medications because it will bind to the medications and render them ineffective. Twin Labs also sells Mega Charcoal Caps 100% Activated Charcoal.


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