IBS is ruining my life: I've just joined this... - IBS Network

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IBS is ruining my life

Salh65 profile image
38 Replies

I've just joined this network in the hope that someone can help me to understand how I can control my IBS symptoms better. I have been to several doctors over the years. I've had scans, blood tests and trial medications. The doctors always end up saying that they cant find anything, so it must be just IBS. 'Just' IBS? My IBS is painful, debilitating, depressing and it's destroying my life. I currently only go 2-3 days without a flare up. I've cut out so many trigger foods, but I still only get a few days relief. I live on Immodium and Colpermin to get me through and have to constantly use haemaroid treatments, due to almost permanent diarrhea. Does anyone have any advice, please?

38 Replies
Maureen1958 profile image
Maureen1958

You could check out BAM (Bile Acid Malabsorption), if you haven't already to see if it matches your symptoms. See link below:

gutscharity.org.uk/advice-a...

I didn't quite reach the criteria myself but maybe you will!

Salh65 profile image
Salh65 in reply to Maureen1958

Thank you Mareen1958. I am very grateful for any ideas. I'll look into it.

Pollyboo profile image
Pollyboo in reply to Maureen1958

Hi Maureen, We spoke sometime ago about your SeHCAT test and you not meeting the criteria for Questran. Have thought about you alot since then, and wondered if you have tried to see your GP again with at hope to trying Questran. Have been reading again my book by Professor Peter Whorwell, titled Take Control of Your IBS. I am sure that with all your exellent research you must be familiar with. Take a look at pages115 and 116 where he mentions the test not being always reliable. I knew I had read this somewhere before. I hope you don't mind me messageing you about this but I hope this may be some help. We all need a bit of help on our IBS journey and I for one seem to be struggleing a bit this week.

Take care Pollyboo

,

,

Maureen1958 profile image
Maureen1958 in reply to Pollyboo

Thank you for thinking of me, Pollyboo. Sorry you are struggling this week, I hope it improves again soon.

I was talking about this the other day to my husband and he told me we have Benenden Health Care, which I knew about but hadn't thought about it for IBS! I am thinking of booking a GP consultation over the phone. I was thinking I could get them to give me a prescription for Questran. I would have to pay for the medication but I don't mind that. It would just be nice to give it a try. Then if it did help I could go back to one of our GP's and see what they say about it then!

Pollyboo profile image
Pollyboo in reply to Maureen1958

Anything is worth a try Maureen. Best wishes.

Pollyboo

Flyonawall profile image
Flyonawall

Forgive me if this is a silly question.Do you use a fodmap dietary guide such as the Monash University one?

All the best

Salh65 profile image
Salh65 in reply to Flyonawall

Hi, yes I do, but thsnk you for the reply.

serena-g profile image
serena-g

I'm sorry to hear that. Have you done FODMAP? I found some really surprising triggers through that. I also use Biotiful Kefir and Biocare probiotics. I've strangely gone from very IBSD to more C. I have no idea if this is the Kefir/Probiotics or strange menopause stuff. I hope this helps. Also Biocare offer an excellent phone service - I found the probiotic I was using had one of my triggers(fructose) so changed to another - quite common if fructose is a trigger as fructans are a common prebiotic called froogliosacharides or something similar. Wishing you all the best.

Salh65 profile image
Salh65 in reply to serena-g

Hello, yes I follow a FODMAP app, which is very good at identifying trigger foods. I've tried probiotics in the past, but they didnt really help. Some caused constipation and more gut pain. I've also tried digestive enzymes, which seemed to be working, but then the diarrhoea started again.

Amelia88 profile image
Amelia88

Hi, sorry you are suffering. I was like you, lots of immodium, the only thing that has helped me is a low dose antidepressant, 10mg of citalopram. It's the lowest dose and was prescribed for anxiety, but the effect on my IBS has been incredible. I totally appreciate it's not something everyone would want to start but it has been life changing for me.

Salh65 profile image
Salh65 in reply to Amelia88

That's interesting, as my IBS is definitely worse if I am stressed.

Amelia88 profile image
Amelia88 in reply to Salh65

Just the same for me, and travelling becane an ordeal, but I seem to have broken that cycle and haven't needed immodium for 10 months now. Good luck, it really is miserable living with it.

Salh65 profile image
Salh65 in reply to Amelia88

That's good to hear and at least it gives ne hope!

BabsyWabsy profile image
BabsyWabsy in reply to Salh65

Mine is if I am anxious. Sometimes I don't feel consciously anxious, but my gut always knows better.

xjrs profile image
xjrs

If you don't have BAM as Maureen1958 suggested, try Alflorex probiotic which has been scientifically studied for IBS. It could be your IBS is due to a gut bacterial imbalance.

grumpyold profile image
grumpyold

I agree with xjrs. It could be due to bacterial gut imbalance.

I had IBS C for years, then a year of IBS D and then back to IBS C more recently. Breath tests showed that I have SIBO. I had never heard of this, but IBS and SIBO do share common symptoms.

Doctors have no idea how debilitating this is....."JUST ibs" !!!!😡

BabsyWabsy profile image
BabsyWabsy in reply to grumpyold

I wonder why doctors never seem to get 'just IBS'.

Salh65 profile image
Salh65 in reply to BabsyWabsy

I think it's because it's not life threatening. But to many of us, it's life changing. There really needs to be more study in this area. I'm starting a new job tomorrow and I'm having a flare up, so that is making me anxious, which makes my symptoms worse. I can't win 😔

grumpyold profile image
grumpyold in reply to BabsyWabsy

I know! "Walk a mile in our shoes" eh.😫

Salh65 profile image
Salh65 in reply to grumpyold

Thank you. I'll look into this. I just feel like a nuisance, if i keep going to the doctors. They dont have many ideas beyond what i can get in the chemist and have already tried.

grumpyold profile image
grumpyold in reply to Salh65

As BabsyWasby says, maybe if doctors suffered from it themselves, they would be a bit more motivated to help.

If you can afford it, there are private breath tests available for SIBO.

Salh65 profile image
Salh65 in reply to grumpyold

Thank you. I'll look into the costs and availability.

Salh65 profile image
Salh65 in reply to grumpyold

I'll see if I can get tested for SIBO. Thank you.

behj profile image
behj in reply to grumpyold

hi grumpy old- I too am grumpy old- due primarily to the gut probs. This folly of my reply to other members : I so understand and hate it for you! I am 71 and have had INS ( and whatever else unidentified functional bowel disorder or enzyme malfunction ) for my whole life. About 3 years ago I began to get periods of relief from staying on FODMAP diet, taking Linzess , senna, adding Fodzyme to to trigger foods, adding fiber ( in Fodmap approved sources, drinking more water, taking peppermint w each meal , and daily miralax AND metamucil ). To finally gain some bit of symptom control is such a relief. Periodically, I still have “attacks) yet have some relief from daily “hell” of the bloat , constipation, abdominal pain. No Doctor has ever provided one bit of help. I read and researched  for many, many hours to get this far. FODMAP diet parameters are on You Tube. I wish you to the best! Don’t give up-sincerely BEH 

grumpyold profile image
grumpyold in reply to behj

Thankyou for replying and for all the very helpful information. You won't believe this, but I am actually drinking a peppermint tea atm.

I will try what you suggest. This morning I actually booked a colonic hydrotherapy session out of desperation. Have the stuck stuff sucked out of me 😂. Reviewers with my problem say it definitely helps. So I'm attacking on all fronts. 🤞

Winke profile image
Winke

I dont now if this might help you but when my pains get very bad i have a magnetic belt that i use it dose not cure it but it gives me some releave from the pain i have had problems for over 62 years with my stomach.All the best

Salh65 profile image
Salh65 in reply to Winke

Thank you.

SunMoonStarz profile image
SunMoonStarz

Have you tried taking probiotic tablets? Not sure what country you are in but I get mine from Holland and Barrett (I don’t work for them). I have found my flare ups now are much much less and shorter lived. So sorry you are suffering like this, it’s so debilitating. Lots of great supportive people on here with great suggestions. Hope you soon find your symptoms ease.

Salh65 profile image
Salh65 in reply to SunMoonStarz

Hi, I'm in UK, so do use Holland & Barrett. Actually my step daughter is a store manager for them. I have tried probiotics, but the ones I tried didnt work, they actually caused constipation and more pain. Alflorex has been suggested, so going to give them a try.

sg25 profile image
sg25 in reply to Salh65

Alflorex have added calcium to their products apart from the chewable version! They had a very bad constipating effect on me.

BlackIsleGirl profile image
BlackIsleGirl

So sorry to hear that you're having such a hard time and that you are getting so little support. Sadly, too many people have a similar story. The "just IBS" response makes me want to scream!

IBS is debilitating, life destroying. It is physical, mental and emotional torture and there is a huge lack of support and understanding. Part of the problem is people self diagnosing an upset stomach as IBS (it takes all my self control not to say/do something I really shouldn't around these people) as this leads to the notion that its a mild thing that goes away. Anyway that's my rant for the day!

Loads of people have mentioned the FODMAP diet which I've found really effective. You could also look at the mental and emotional side of things. Stress and anxiety can be big triggers for loads of people so looking at ways to reduce these things can really help. Yoga, meditation and mindfulness can help but whatever you find calming is good. I have to say the stress of not getting effective support from medical professionals doesn't help!

Personal I found that having somewhere to vent the frustrations and moan about the symptoms was a big help. This forum has really helped with all that. At least people here get it!

Not sure if that's any help at all but im glad you've found us

Salh65 profile image
Salh65 in reply to BlackIsleGirl

Hi, yes I do use a FODMAP app as guidance for trigger foods to avoid. I zgree that dtress can have a big effect on my IBS, I also have high blood pressure and I think that has a bearing too.

BlackIsleGirl profile image
BlackIsleGirl in reply to Salh65

I can see that high blood pressure might affect things. Sometimes dealing with other stuff like stress etc can make a big difference to your symptoms. Hope you find some relief

behj profile image
behj

Hi Sall, this is a copy of my post reply to M. I so understand and hate it for you! I am 71 and have had INS ( and whatever else unidentified functional bowel disorder or enzyme malfunction ) for my whole life. About 3 years ago I began to get periods of relief from staying on FODMAP diet, taking Linzess , senna, adding Fodzyme to to trigger foods, adding fiber ( in Fodmap approved sources, drinking more water, taking peppermint w each meal , and daily miralax AND metamucil ). To finally gain some bit of symptom control is such a relief. Periodically, I still have “attacks) yet have some relief from daily “hell” of the bloat , constipation, abdominal pain. No Doctor has ever provided one bit of help. I read and researched  for many, many hours to get this far. FODMAP diet parameters are on You Tube. I wish you to the best! Don’t give up-sincerely BEH 

Coco69 profile image
Coco69 in reply to behj

I have felt totally alone researching so many dead ends of possible causes. It’s such a lonely condition

behj profile image
behj

Suggest you research medically reviewed articles Re colonic therapy. Google “.scholarly articles on colonic therapy”. I get peppermint capsules “Regiment”. 877-877-4059. Beh

bburzycki profile image
bburzycki

I can only say as someone that does not get the 2-3 day breaks any longer that I too have heard al those excuses from the Dr's. or my favorite "It's just in your head". While I do not disagree that some of it is in all of our heads there are usually symptoms that place it in your head.

It seems as thou you are on multiple medications and treatments. What happens when you stop doing those? I found that my symptoms were much worse with the medications, but I had to give it a try and it is never easy, as it can take weeks for some medications to get out of your system. It is hard to know where you stand if the medications you are taking are just layering side effects on side effects. It seems this is the new normal, where Dr's like to prescribe meds to cover up other meds. It is nice to have a baseline to start or restart from, when I did this I found my baseline was better on way fewer treatments and medications.

Also not knowing your eating habits and exercise habits makes this a bit tougher to know as without those two IBS or whatever the new Dr. excuse might be is much harder to understand potential solutions for.

You are not alone many of us deal with this daily and we all want solutions. For me it has been over 25 years of it interfering with my life daily. No answers, just people telling me there is nothing wrong.

Coco69 profile image
Coco69

I hear you, only ibs. I’ve been on the same journey, was housebound for 6 months. Had a mix of vomiting/ diarrhoea whatever I ate. Was on low Fodmaps, gluten free and dairy free simultaneously at one point and still had symptoms.

The only two foods that do seem to trigger, but not every time, are eggs and peanuts.

I now take Fexofenadine - an anti histamine which seems to have reduced the number of episodes.

It’s a really terrible condition, keep going to the dr and I hope you get some relief soon

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