Starting to live with IBS

[Bella33355]

Hi everyone, I am 37 I have osteopenia, IBS, SIBO, gluten, lactose and other food intolerances which resulted in IBS and osteopenia. it's quite hard to escape some of these foods though, but I am trying my best. I had tough IBS symptoms when I was pregnant 9 years ago then the symptoms stopped and restarted in 2020 with eventual cramps, pain, constipation, bloating, etc. beginning from last summer my symptoms got worse when I started to take hormonal medicine to treat a cyst, but eventually, I had to stop taking it because of the heavy abdominal cramps.

I work from home now, but I am planning to change my job soon, and I dread to think of the consequences and how I am gonna deal with the bloated stomach and all the pains and cramps I have to face on a daily basis.

My question is to all of the people who have been having this condition or maybe a bunch of similar conditions like me, how you are trying to deal with it and live with it? What pre/probiotics are you taking?

FYI, I have been taking lots of prescribed medicines to ease my IBS and SIBO symptoms, I usually feel good for a week or two then the symptoms come back severely and I feel into depression.

[LivealittleS]

Dear Bella,

I am sorry to hear this. Living with Ibs is definitely not easy. I am trying to have a routine and it does not fix the problem but at least it makes it easier living with IBS. I am exercising and doing a bit of meditation in the morning, or swimming sometimes. I am also drinking kefir with my lunch meal and I have noticed my symptoms have improved. Please don’t let this disease take you into depression but instead try and find things that work for you ( like certain foods, teas, habits, hobbies) so you can concentrate on them and not on Ibs. I know it is easy day than done but we need to try. All the best for you!

[Misspomfrey]

Try some probiotics which have Inulin and breve added, there's lots on the market so it's not easy to recommend any. Everyone's different. I've recently started to add some Golden Flaxseed to porridge in a morning, porridge is all I can eat, no other cereal. I find there's an improvement in bowel movements as long as it's just a teaspoon full and no more. Flaxseed tends to regulate the bowels. I used to use this years ago but stopped for some reason, can't remember why, but I thought I'd try it again. The golden is better than the brown for me.

[edwangy]

What was the test for SIBO

[Bella33355 in reply to edwangy]

I don’t remember since the results are in my gastroenterologist’s computer I took the test there and she got tge results automatically

[bluejourney]

Try using the AIRE 2 device. It’s not that expensive- much cheaper than getting breath tests - and very simple to use. It tells you the amount of methane and hydrogen in your breath that day. I test first thing in the morning to monitor what’s happening with my methane SIBO, and what’s making it worse.

With constipation you probably have methane SIBO, which is harder to treat, but a combination of courses of Rifaximin and Neomycin, together with a prokinetic to keep your migrating motor complex working are recommended. Often people need multiple courses. Unfortunately there’s no quick fix. I’m still working on my SIBO, but I would say I’m say much improved.

Leaving 4 hours between eating (no snacks) is also helpful, to allow your cleaning waves (MMC) to work and help clear the bacteria out of your small intestine. Look on uTube for videos by Dr Mark Pimmental. He and the team from Mount Sinai Hospital are at the forefront of SIBO research, and I think talk the most sense on the subject. The SIBO diet is also recommended, which is slightly different to the low fodmap diet. If you have methane SIBO, Pimmental says acid makes it worse, eg vinegar. There’s a lot to learn, but there are also a lot of positive things you can do to help yourself so don’t let it get you down. You need to do your own research and know how to manage your SIBO, as, even though SIBO was first discovered in the 1930’s, most doctors nowadays, including gastroenterologists, still don’t seem to have a clue. Good luck with it all.

[Bella33355 in reply to bluejourney]

Thank you for your reply such an insightful comment I have never imagined that I would find a better support and advice than in anywhere else since my health was getting worse because of the doctor who disn’t have clue about my problems they tended to orescribe me Kreon and omeprazole all my life

[Bella33355]

thank you everyone for your advice and great ideas I definitely need to research more instead of falling into depression

[CockeyMoor in reply to Bella33355]

I fell into depression in 1996 when my GP decided my abdominal pain was in my head for 6 months. Luckily a kind Dr at A&E tried me on Ciprofloxacin and my Spastic colon /IBS diagnosed by him was resolved. I received an apology from my GP for suggesting I needed a Psychiatrist!

Please keep researching and learning. You will get on top of things. Also you are still young so hormones play a big part in our emotions and with you saying your IBS was worse when pregnant it may be that a hormonal imbalance is playing a part.

I had a natural lack of progesterone when I was 19 and realised that our hormones are so finely tuned that they are so important in our mental health and well-being. After the menopause I am finding IBS/ Diverticular disease to be worse so just pondering whether your hormones are affecting you because you mentioned that when you took hormonal medicine for your cyst your symptoms became worse.

Hope you soon find something to help you to get on the better side of things. I have had years with hardly any symptoms then every so often I get a flare of IBS-C or Diverticulitis. Take care and do yoga to help with relaxation.

[Bella33355 in reply to CockeyMoor]

I appreciate your reply, now I am trying to visit a therapist she is trying to help me to control my mental state which in itself helps me reduce all this pain and cramps, although I know that the symptoms will come and go because of what I eat in a day or I feel, berceuse I am kind of an emotional human being and I found out that lots of my pain becomes worse when I have stress, so I hope this therapist will do her job and my gastroenterologist will try to do her job with her medicine and everything. The things I am learning here are very important and there are sometimes things that I have heard for the first time here and then I go and ask my doctor she gets surprised that I found out smth new or interesting about IBS or osteopenia(I have osteopenia, SIBO,IBS haha all of them are interconnected unfortunately).

[bungi1961]

So Sorry I haven't replied sooner I had Breast Cancer June 2018 had operation in the same month 6 rounds chemo followed with 15 radio sessions ( but that's not for this forum

Well my IBS/Diverticular Disease started during the 1st lock down what with the odd bit of blood in my poop so had to wait for COVID to pass through so crap 2020 as I had to be in Isolation for that year so end of that year I contacted Doc's so had to have clear covid tests don before 1st colonoscopy 6/7 polyps removed during that one Consultant found more but could not be done in that one so had to go back 2 weeks later 4/5 more removed that was when he told me what was wrong

As I had the chemo/radio I am now prone to osteporsis as it has weakened my bones now well I do know that I am a lot older than you ( 62 years old ) so that is to be expected I was still having problems over last Xmas 22 so back and fourth to Doc's yet another Colon investigation all OK this time more tubes up my bum ( BLOODY AWFUL ) I even had a scan like you have for a baby ( glad they didn't find one ha ha ) Yes had 2 have that NASTY Prep stuff that went right through me no bowel control at all even water ( SAY NO MORE ) well all results came back clear ( THANKS ) bit still got IBS/Divert Disease loads of med's loads of pain can't sit stand or walk forever having gnawing nasty scraping in my bum and constant "URGE" 2 poop all the time on& off the toilet most days pants and trousers up& down like a YO-YO forever in fear as to what may come out ETC ( you know what I mean ) It has got 2 the stage now I don't bother trying to go out thank goodness 4 online food shopping ( not that I eat much but hubby does!!! ) he is retired now so I am no fun anymore I even missed my Mum's Funeral this year as she lived 150 mile away and because of my illness I had not seen her the last 4 years before she Died and my name is mud with my 3 older Brothers ( oh there is toilets on the Motorway as if!!) my sister is more understanding hubby not so sure as I never tell him about the pain I get as he doesn't really understand ( To be honest until they walk a day in our shoes ) So yes it is CRAP being like this where you can't eat or drink properly ETC I have got to the point that I am fed up with going Doc's about it now and as for these fod map diets I won't get started on them as you can guess I am Peed right off ( SORRY )

Well take care and sorry 4 ranting on but please take care of yourself & try 2 keep well OK

[Bella33355 in reply to bungi1961]

thank your for sharing with me your struggles, I feel you, yeah this is a shitty condition one that you can explain to all of them and no need to explain, all in all they don't care until, like you said they walk in our shoes

[bungi1961 in reply to Bella33355]

Thank you for your response to me Oh I am sorry for going on so much as I did when you have problems of your own to be coping with but from time 2 time it feels good ((ish) to get things of our chests and even when we do the BLOODY stuff is still there eating ( I wish!!) away at us it's like it is all ways there laying in wait 2 attack us at any given time of the day I just wish you all the best with your problems and things trying to steer your way through this jungle of IBD/IBS or Diverticular Disease I got IBS/ D,Disease and to be honest I think the Doctors don't even know that much about it!!! either all I do know is the sooner some Medical boffin may come up with a cure!!! I bloody hope so please look after yourself as best as you can x

[Sleepymoley]

You've had a lot of good advice already, but I can highly recommend amitriptyline for the pain management. It's been a complete game changer for me and as reduced the constant, debilitating pain I had down to an occasional niggle. It's marvelous ☺️