Frustrated - Immodium reliable

[Tiger31]

Hi everyone, never posted before. I’m 52 F. Had IBS since my mid 20’s. I take Fluroxitine daily (have for approx 20 years) for my IBS. Not sure it even helps. I can mostly manage my foods, know my triggers etc but travelling and socialising is my problem. Poor hubby is tired of it after 30 yrs of marriage, bless him.

I canno go anywhere, concert, holiday, trip, shopping trip etc without taking a minimum of 3 (sometimes 4) Immodium. Starting night before travel. Sure this is not safe!! Then, I’m of course constipated for well over a week - 10 days. Carry wipes, spare underwear- now toying with continence pants) just in case of accident. Had several very, very near misses. Know this has become phobic. Had CBT (only breathing techniques helped) doesn’t stop urgency/panic/fear of What ifs!!!!!

Generally, I have all but stopped going out socially, too hard but don’t feel I’m living but existing. I dread being asked to a meal, social event and often decline (with excuse) or have last minute cancelled too. Feel unreliable and am a liar. I manage to work FT very close to home and been there 21 yrs - very happy there.

Bought a caravan to try to build travel confidence and can (sometimes) get to the van but am then stuck there scared to go out in case I need the loo. Help!!! Advice??? Anyone similar? Dr’s hopeless over the years - not seen one for IBS in many years.

Thank you for reading.

[xjrs]

Fluroxitine is a SSRI. As I understand it SSRIs may increase the risk of diarrhoea with IBS, so not sure why you were put on these specifically for IBS. Though I wouldn't stop these or taper them down without speaking to your GP first about continuing or trying something else.

Also have you tried any methods to help bring your IBS under more control? For instance, a good probiotic such as Alflorex, which has been scientifically studied for IBS or Symprove? This is because many people's IBS is due to a gut bacterial imbalance. Failing that the FODMAP elimination and reintroduction diet via a dietitian referral? The probiotic is worth trying first since it may make you more tolerant to different foods. Alflorex worked best for me.

There is also the Nerva gut directed hypnotherapy app.

If all the usual IBS remedies fail, you could ask for a test for BAM (bile acid malabsorption) which can produce constant diarrhoea.

If probiotics over a trial period of 3 months make you condition far far worse, you could discuss the rare possibility of SIBO (small intestine bacterial overgrowth) with your GP, though overall your symptoms are far more likely to be related to IBS.

[Anaj in reply to xjrs]

You need to see a specialist to get support. For many years I did the same as you. One of the tests I have showed bile salt malabsorption. I am currently on the FodMap diet and things have improved but you need specialist support

[xjrs in reply to Anaj]

Did you mean to reply to Tiger31 rather than me? Hopefully, they'll see your post anyway (I think).

[Tiger31 in reply to xjrs]

Thank you so much for your reply. I will defo be researching the probiotics you mentioned and making an appt to discuss the Fluroxitine too. Advice much appreciated.

[Dollymae06]

Can't believe I'm reading this I am exactly the same it is so stressful. Immodium is safe to take I went to Consultant and he told me he was happy for me to take it to enable me to have a life outside the house. We have a static caravan too and its over 2hrs travelling but I wear Tenna Lady pants just incase of accident. I can't control my motion when I get the pain I have to get to toilet straight away . It's disabilitating and anxiety makes it worse it's a vicious circle. Jus remember you are not alone and I'm so sorry you are dealing with this.

[Tiger31 in reply to Dollymae06]

Thank you so much for taking the time to reply. Horrible to know others suffer so much but also reassuring it’s not just me and I’m not alone. I could do anything and go anywhere until I was 26 and had my 2nd daughter. I wish I could go back to then! I have been thinking of the Tenna pants just been putting it off as I’m sure you understand. Hopefully, it might give me a little more confidence and help me to reduce the Immodium I’m having to take just to get out and about. Feel trapped and I’m going to be a grandma in Feb so want to get a better handle on this so I can enjoy my grandchild. I wish you well and will also take the other advice to try and regain some control. Take care. Xx

[Sparrow58]

Hi Tiger31

I also have an understanding partner, but like you but I know he gets frustrated. My IBS is caused by Anxiety mainly and some foods .So like you I do not like socialising etc. or going to unfamiliar places. And the more you try the worse the anxiety gets. Vicious Circle!

I take Immodium to put my mind at rest when facing a situation that I know will cause me problems, the GP suggested it. If you have not done things for a while you need to take small steps. Try a short walk try going for a cup of tea in a place where you can access a loo easily. Not too far away. Good idea taking spare trousers etc with you and wearing tena pants. The feeling you get when you have this little trip out with no accidents is great and you should be proud of yourself! I have IBS in the mornings mainly so I tend to try and do these trips in the afternoon. I have done a CBT course that I referred myself to and that did help a bit. I hate not being able to go out and have a good time like " ordinary folk" it really makes me cross and upset. I found Lock Down was the perfect excuse and I can honestly say I have got worse since then.

All the best. You are certainly not the only one who feels like this.

[Tiger31 in reply to Sparrow58]

Thank you sparrow 58,

We are so very similar. Yes, lockdown was my ‘get out’ clause and I liked the ‘no plans’ which is very, very sad to admit but my anxiety and bowel thanked me for it. But, like you made things worse. Your ‘normal’ comment strikes a chord as I pray for it. But, I’m do try so very hard to push myself to do things, it just exhausts me mentally. Immodium is definitely my good friend but I live in hope there will be a cure for all of us as this is such a debilitating condition that has devastating consequences. I missed an urgent hospital appt Friday because of my IBS. First ever missed in 35 years and been struck off by consultant now because of hospital policy. Feel discriminated against as was too late to cancel appt, although I did try to cancel and attend but had to turn back home on the 1 hr journey! Frustrated!!!

Please take care of yourself. Xx

[Luisa22 in reply to Tiger31]

I am sorry. It really is unkind and awful that you are penalised for missing an appointment last minute, on health grounds!! What do they expect you to do when you have an unpredictable awful condition like IBS? Even the stress of a 1 hour journey or having to get up earlier, etc is enough to bring on an IBS problem. I wish more healthcare people would wise up about IBS!

[Sparrow58]

I get IBS when I have to attend a medical Appt. I explained this to my GP when I went there for just an ear infection and all I got was a HMMM. I don't know about you but sometimes you just would like them to be a bit more understanding I know that it is incurable but the amount of stress and energy it takes out of you to get to there.

[Luisa22 in reply to Sparrow58]

I know. I find all kinds of appointments difficult. Many of them are morning ones too. Acually I find any obligation where you have to be there at a certain strict time, especially "too-early-for-my -body" a.m. enough to upset my tummy

[Whitesugar]

As xjrs says there are other conditions which cause diarrhoea as you describe it. Things have changed (a bit!) in 30 years. I wonder if you were diagnosed by a GP all those years ago. It sounds as though you should be referred to a gastroenterologist for a reassessment. My 40 years of uncontrolled diarrhoea was finally ascribed to Bile Acid Malabsorption and is now under control with medication. You can look it up online. I feel your pain

[Eastbourne11]

Do you have a gall bladder? It might be Malabsortion of bile. Do you have yellow diarrhea (which is the bile? If so it might be MoB. Try Colestyramine but you need to take vitimins and iron because it takes these out of the system. FODMAP diet works but you already know your triggers. Good luck.

[Mkimber]

I am the same but now worse since I'm on a long term antibiotic treatment. I have been taking up to 8 Immodium when a have to do something important and must fast as well since any bite of food is my trigger. My MD comments it is not harmful to take those doses of immodium I have been doing it for years.

[angelwings52]

Hi, the CBT therapy won't really help, but hypnotherapy can and does work really well, it's one of the best things that I did. I would suggest that you speak to your GP about being tested for Bile Acid Malabsorption, and have you had your gallbladder checked?