IBS Network
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Toilet controling my life and I'm only 26

New to this. First post.

Still in my twenties and should be living life to the full with lots of energy. But instead I'm controlled by a toilet and get scared to leave the house. It's been 3 years that IV struggled with anxiety IBS and only recently been to the doctor's for help and they've told me to go to therapy to help with the anxiety.

Also I have two young children who love to be active and out and about but even going to the park sets an attack off and the worst is the school run!

And to top it all off my husband is an amazing person and very loving but when it comes to anxiety IBS he says it's all in my head, or stop thinking about it or I'm over reacting which really gets me down that he doesn't understand what I'm going through.

So any help or tips will be very helpful.

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Has a doctor diagnosed you with IBS. If not, see a doctor or a gastro first. This is important as there are some other conditions which mimic IBS. If you have been diagnosed, read the posts by lululubs. She has a lot of good information, especially regarding the FODMAP diet, probiotics, peppermint pills and lactose.

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Yes the doctor has diagnosed me with ibs. Thanks I'll check out lululubs.

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She has given me great advice.

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#1 - Get a real diagnosis

#2 - Understand if it is in your head or not (#1 helps with this)

#3 - Many suffer your not alone. I have suffered for 20+ years

#4 - This is the right time to have gut issues as there is a ton being done to better understand it

#5 - Learn to live with symptoms but always try to find ways to end the symptoms

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I know what u mean, I'm also 26 years old. IBS is not in our heafs, I knew nothing about IBS until I did research of the symptoms I was having. Not just that but not thinking about it isn't going to make the tormenting pain go away, ppl say it's all in ur head because they have no answers to what's going on in ur colon. That's like telling a depressed person to get over it, pisses me off. Instead of be littleing ppl, ppl should try to understand the pain and agony where going thru, the fear, suffering. It's been 2 years since I last smiled and enjoyed life and had fun, next month will mark 3 years. It devastated my last relationship of 4 years, I couldn't take her out nowhere, afraid to leave the house and couldn't eat nothing that wouldn't trigger an attack. Some women say ibs pain is almost as bad as giving birth. Or like period cramps, really bad ones, I can't confirm that since I myself am not a woman. But IBS pain is extremely tormenting and painful beyond belief. I was taking linzess until my insurence decided not to pay for it no more. It made life easier, the pain went away, yea still stuck on the toliet everyday, but I was in no to little pain most days. Problem is the bottle of pills cost 400 bucks out of pocket, that's $13.30 cents a pill. It's ridiculous.

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Thanks for the reply, I can understand how it can ruin your relationships as they never understand how controlling it is unless they have dealt with it themselves.

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I just had someone pm me with a new medication that is supposed to be better than Linzess, Amitiza, Trulance, Relistor. I think it is called Regolor or reglostan. It is Procuptalin. I will have to look at their post again and find the correct spelling. It was just approved for use in U.K. and soon to be in States.

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I have had the same thing for years. I went to see the doctor and she put me on anxiety tablets. It really has changed my life! I would always not go out with my family for fear of needing to be near a toilet!

I still have the odd day here and there that it flares up but am a lot better and so glad I got the tablets that seem to have worked wonders for me!

Hope you get sorted x

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Just out of interest, what anxiety medicine were you prescribed?

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I take citrilopram 20mg at the moment x

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Thanks. Did they give you that as first option or did you try other meds before?

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This was the first option I was given. So glad it worked for me!

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I Have mental illness, and take Clonazepam for anxiety, Busphar and Seroquel. I have heard Magnesium citrate or Glycinate many of us are deficient in helps greatly with insomnia, stress and anxiety.

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What are the anxiety tablets you take?

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I take citrilopram 20mg x

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Aw bless you, yes anxiety and IBS go hand in hand. I have the opposite problem to you that I can’t go to the loo, and it has taken over my life, but you will find a way to get your tummy under control, and I will to. I have tried antidepressants but I’m not a fan, but they do help lots of people. I think hypnotherapy and working with your diet would be so beneficial. It is difficult for family members and friends to understand but it is good to talk, this forum also helps knowing you are not alone and tips from people with the same problem will also help you 😃

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It's hard and I do feel for you. My IBS started when I was 19 and had a major impact on my lifestyle. I always maintained the anxiety was caused by the IBS but getting a doctor to agree was impossible. Over the years I've been prescribed different antidepressants, beta blockers, anti anxiety meds so many I can't remember all of them. Tbh none of them made much difference. I've had 5 lots of CBT and been to lots of counsellors paid from my own pocket. I may have felt a bit less anxious as in I could expand my comfort zone but none of it ever stopped the blinking diarrhoea! Last year I was diagnosed with another unrelated disease and was put on naproxen. Next day, IBS gone. I've since had a colonoscopy and endoscopy (the disease I have has strong links with colitis so it needed to be ruled out) that was all clear. I just have an extremely loopy redundant colon, which explained the chronic childhood constipation I suffered from birth. Since taking the naproxen the anxiety has disappeared which I feel proves my belief that the anxiety was caused by the IBS not the anxiety causing the IBS. Unfortunately at some point I will have to stop taking naproxen I'm sure and I'm dreading it! All the gastro could advise for me was buscopan.

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Be careful with Naproxen..chronic use is known to cause kidney or liver failure. Naproxen..(Which I used to take Naproxen 500, for degenerative back disease) and prescribed pain medication (Hydrocodone) stopped my IBS, but they are also notorious for causing constipation. Then when you go off of them, your digestive system is thrown off, which is what happened in my case. Two years later, have not recovered.

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I know :( I've started anti-tnf drugs and thought would come off the naproxen as soon as that kicked in. After 3 months, it's not made a difference yet but I'm told it can take up to 6 months. I was offered arcoxia which was actually a better drug for me - it tackled the pain I get in my fingers whereas naproxen never touches that, but it upset my tummy terribly. I take omeprazole with the naproxen and someone did suggest the arcoxia may not have been such a problem if I took lansaprazole instead, so I will discuss this next time I'm in to see my rheumy.

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I have never heard of arcoxia? 😕 I'm in the States. I will look it up..☺

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etoricoxab I think is the drug name, arcoxia is the brand :)

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Just looked it up. Made by Merke. It's a narcotic similar to Naproxen, unfortunately it is not FDA approved in the United states, as FDA said Many problems are being seen on it, per their website..

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Ah I believe there was cardiovascular risk in some people? Here in UK Arcoxia is seen as "safer" than naproxen as it is a COX2 inhibitor and believed to be better for the stomach.

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There are new drug-free treatments, like ENTEROSGEL. Very important not to end up taking opioid drugs like loperamide for many years, they have side effects and you can get addicted to them. You can also get free treatment from Enterosgel UK, they give away 3 weeks supply.

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My GI doctor told me it's safe to take loperamide daily. I don't take more than 1-2 pills a day and only on days I need it. The only side effect I've ever had is an increased need to pee.

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There is a lot of information about harm of the opioid drugs for long terms use, the package says to use during 2 days, people use for years and you can read the side effects on their leaflet as well. The mechanism of action of drug-free gastrointestinal adsorbents is different and they have safety 30 years history.

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I used to be prescribed Welchol, which helped immensely. Levsin or Dyclomine.

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I just went to their website. Says it is used safely for people with IBS, daily. But not to use of someone has blood in stool..Chron's disease or Ulcerative colitis.

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I've had IBS since 2014 and anxiety since 2010. I had gotten my anxiety under control without pills, but after the IBS diagnosis my anxiety came roaring back. My doctor prescribes me Xanax. I used to just take it when my anxiety was really bad, so 30 pills at the lowest dose could last me close to a year. But this year my IBS got really bad which of course set off my anxiety, so lately I've been taking Xanax every day. I really like it, I call it my SHHHHH medicine. It just kind of quiets all of the "what if" thinking in my head and allows me to focus on work or whatever else I have to do. The other thing that I can't live without is Imodium. I never leave home without it. If I know that I'll be going somewhere public and won't be able to run to a bathroom at a moment's notice, I will take one or two Imodiums ahead of time. I've spoken to my GI doc and he said it's totally safe to take Imodium daily and a lot of his patients use it to manage their symptoms. One thing that has made a surprisingly drastic impact for me in the last three months is Calcium Carbonate supplements. I get them from the local drug store, take half a pill at night before bed with my other vitamins (my IBS is usually worse in the mornings.) Within a few days of starting this regiment, the months long battle I had with almost daily diarrhea and loose stools went away. I've had almost three months of nearly perfect BMs, except for the occasional bad day which I can usually trace to a poor meal choice on my part. Not sure it would work for everybody and I was super skeptical about it, but I think it's definitely worth a try. Continue to be your own advocate! Keep checking these forums and posting! We're here to support each other :)

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Thank you I like the imodium idea x

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You're welcome! I only wish I had tried it sooner. In the first year or so after my diagnosis, I pretty much stuck with just the prescriptions that did nothing (Librax/Bentyl) and Peptobismol which only helped a little. I was afraid to take Imodium cuz it seemed unnatural to stop the process and I was afraid of side effects. Ended up having a really bad bout of D the day of my sister's wedding and wasn't even able to walk down the aisle. It was miserable. Soon after that I started taking Imodium as needed and it was a huge help.

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Tell your doctor you'd like to try either Welchol or Colestipol. These will stop diarrhea in it's stupid, little tracks! I take 6 pills (3 twice a day) and they work very well. I had chronic diarrhea for YEARS...wasn't able to leave my house hardly at all....now I'm fine.

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Oh I'm so sorry as I know exactly how you feel it's a nightmare

Mine is definitely anxiety and I use relaxation techniques there is a lovely video on YouTube by Michael Sealey on IBS and anxiety

It's very very unlikely you will ever have an "accident" and I'd strongly advise you keeping a diary as you will find it will always follow the same pattern and the anxiety will always die down

Your husband is right it is" in your head "by that I mean your thoughts will start your anxiety and keep fuelling it as long as you think about it Trouble is it isn't that easy is it it would be wonderful if we could just stop the worry

Dr Claire Weekes books are very good and DARE by Barry McDonagh

I hope you start to get better soon and enjoy your lovely children without the horrible feelings of always needing the loo 😊

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Thank you so much for your comment x

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All the best xxx

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Thanks! Great information. Will definitely look for Claire Weekes books on Amazon.com

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Dr Claire Weekes has been a lifeline to me I really hope her words will help you too xx

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Young and distressed

Wow, I so relate to your struggle. I too have a great spouse that tries so hard but does not understand how horrible IBS is.

I too get anxiety induced IBS and have for years and years. Starting in my twenties also. I am now in my fifties and have learned how to deal with this disease. It’s never just going to go away. Think of it like an alcoholic who doesn’t drink for years but just one will throw them over the edge. You must not wake up and concentrate on the one worst thing you have. Instead think of positive things in your life, how much worse it could be, get a I don’t give a crap attitude, tell yourself it’s the only life you have and I’m going to live it. We all have to admit that we worry what others will think if we have a problem or accident in public. If we didn’t care what others thought we would never have a problem in the first place. Don’t worry, tell yourself that whatever happens, happens, If it does happen so what, the most important person in your life should be you. We only get one shot, live, love, relax, enjoy, who cares!!!!!!

Good luck😊👍 you’ve got this👍👏

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Thank you so much for the amazing comment.

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The only thing that actually "cured" my IBS was when I was prescribed Hydrocodone (opiod) and Naproxen 500 that was prescribed daily. I stopped taking these after seven years, sure enough IBS came back..even worse then before and constipation.

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After seven years on these meds I am not surprised that your body had responded twice fold. My own physician and my gastroenteritis warned that by taking ppi’s such as Nexium, Omeprezol and the like you will be tied to them. They explained that after years on these meds you deprive your stomach of acids that are there for a reason. Some can not tolerate the acid or have too much but our body creates it for a reason. Once you discontinue use after depriving it for years it comes back (as it should) but your body responds as if it is a new and unknown substance. The acid is stronger and your body even less tolerant. This is why I refuse any and all medications, even probiotics that are touted as all natural. Maybe they are but they have something in them that changes your natural metabolism or they wouldn’t be in use. The pharmaceutical industry is out for money not your health, they don’t have a clue why they are ordered or what they are used for. I take nothing and can honestly say that whatever bad days I have are worth it. I don’t need medicine, I just need to be calm and think positive vs negative, your gut responds according to how you are responding. If I tell myself I am too tired to do something I fee too tired to do it but if I get up and say “ok” I’m not getting anything accomplished sitting here I feel rejuvenated and a sense of accomplishment. If I fear how I feel I will feel fear and my gut responds accordingly. I have noticed on many occasions that after I do something I shock myself later by thinking wow when my mind wasn’t on my stomach I actually felt fine, didn’t even think about it until I thought about it! Mind over matter

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I am glad you have found something that works for you. ☺ Have a great week ahead.

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Hi, many people don't understand their own bodies and bowels, much less ours. Many don't know what else to say except "it's Psychosomatic" or "all in your head" I then give them pamphlets or literature to read. Some read, then understand, some don't..until one day they could get it themselves. I agree, it affects your quality of life, and it has affected mine. I have no social life anymore, have lost so much weight due to my illness, I get mean comments. Yet, I never got unkind comments when I was overweight. Go figure. I have lost all my friends, as I have had to cancel plans due to feeling miserable. They give up on me. It makes for a very lonely and isolating world, and to top It off, uncaring and dismissive ER Doctors or Gastros..with bad advice. I have heard many people with stress and anxiety are deficient in Magnesium. You may want to get your electrolytes checked by blood test, or finger prick. Magnesium citrate capsules or powder supplements are excellent for anxiety, muscle cramps, insomnia, irregular heartbeat, as is B12 and B9, which many people are also deficient in.

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Thank you I'll look into the magnesium side of it x

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