Diagnosed just yesterday, have had a painfully... - IBS Network

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Diagnosed just yesterday, have had a painfully distended abdomen for weeks now no change and I’m feeling pretty depressed with it all now!

DreadlockFairy
DreadlockFairy

Hi, I’ll just start with a relatively brief introduction to say ‘hi!’ and give a rough idea of ‘my story’ so to speak.

I’ll write (and respond) to people more ‘personally’ when I get chatting and get to know some of you a bit better.

But for now:

JUST DIAGNOSED YESTERDAY. I have just lost 3stones in weight and whilst not finished losing weight yet was feeling good! Down from a size 22 (the shame!) to a really nicely slim and shapely size 14-16. Then this hit. I have had a SERIOUSLY distended abdomen and pain for weeks now, won’t go. Dr worried it was ovarian cancer, but all checks there ruled that out, thank goodness! And eventually yesterday it was revealed what is happening with me. I received a diagnosis of IBS. I know nothing about IBS really but she told me (and I’m quoting her directly...) “a rare severe form of IBS” whatever that means. So I’ve started medication. Fluoxetine [trade name ‘Prozac’] (apparently it helps?) and Buscopan (x6 tablets a day) but I have to confess I am struggling enormously with this. Not the diagnosis, but what the condition is doing to me. I’m feeling utterly depressed with it all. I would really value any support and will try to give as much back. Thank you. X

15 Replies
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i would do food intolerance test too may be eating something that not agreeing with you that is some extension!

I think you need to be referred to a hospital/ specialist. There are many things it could be other than ovarian cancer. And what checks/ investigations have been done?

IBS covers a lot of things and ideally your doctor should be trying to work out what is causing it. Ask her for the name of this “rare, severe form of IBS”.

Good luck.

Have you had a ct scan? Do you have any rise in body temperature? Back ache? Do you feel 'full' after not eating very much? Do you feel sick at all?

Hidden
Hidden

I used to bloat up like that, even worse actually - and I don't have IBS any more.

I would have a think about the why you got up to 22 stone, because there is a why. Now that you weigh so much less (congrats for doing that!) it's like your body now needs you to bloat up either to appear physically bigger, or to tell you there's an unresolved emotional issue behind the original weight gain.

The Prozac isn’t going to solve it. Yes you should see a GI Consultant to exclude other things. After having excluded those, as you look very bloated, the Low FODMAP diet, in particular in your case, should take care of the bloating . It sometimes but doesn’t always take the pain away but it does get rid of the bloating.

Hey

I feel for you i was diagnosed about 18 months ago after months of test(laparoscopy and colonoscopy) for endo and colitus. Lucky had neither.

I was in such pain all the time everything i ate started it off i never slept as i had stomach ache all night it never stopped... id go between d and c.

I found through a friend a intolerance tester and found out i had a gluten and yeast intolerance.

From that day on i have not touched either and in one week i noticed difference it was amazing. My stomach was flat! I lost two stone( not in a week😂in about 6 months) and i just felt like brain fog had lifted, period got better, skin cleared, nails grew. It was like my body had been being poisoned and i never had a clue.

So mayb u have gained a intolerance? Ur not born with them as ur not allergic but if u eat so much of something after a while ur body will get intolerant and try to tell u it not happy.

So may go gluten free for 2 week? With no bread at all as that was my worst thing bread i cant even stand smell now. See if that helps if it does there ur answer if it doesn’t mayb try dairy i know that can do same?

Hi everybody thank you for your responses! I am going to try to reply to each of you in this reply, if anyone feels I haven’t responded to them personally I apologise I am just trying to reply to all the things brought up in this response.

First thing I want to clarify is I was never 22stones in weight, that would have made several stones heavier than I even was at my start weight before I lost 3stones. I think just a crossed wire, I was a SIZE 22, not 22 stone. I am now a size 16 (albeit with a massive pregnancy looking belly) but it’s fair to say at my start weight (NOT 22stones, quite a lot less than that) that still made me far too overweight. I still am overweight but heading in the right direction. 3stones less now and 3dress sizes down - but that’s not to say I am finished losing weight, I haven’t stopped as I am not a healthy weight yet. But all this nasty abdominal distension aside I am pushing on trying to lose all the remaining weight I need to. Just this makes it so much bloody harder as it’s frankly painful, and from a psychological point of view really depressing, I’d really started to see a small (for me) waist emerging and all my hard work losing the weight was evident to see. Very noticeable. So to have ballooned in the belly is extremely disheartening and has had me crying every day about it. Vanity? Yes, possibly. But why not? I’ve been working so hard to achieve a better and more positive body image (as well as for better health). I’ve hated the skin I’m in all my adult life, it was amazing to start to see myself in a slightly improved way, then this happened. It still shows that Ive lost weight as under my bust (before the distension starts) is noticeably small, much smaller, my arms are much slimmer, I’ve lost it off my face, and my neck too is lots slimmer than it had looked. So it still shows my hard worked for weight loss (if seeing past my swollen belly is even possible!) and it shows me (just enough) that despite the difficulty *this* has thrown up that it is still worth the effort to push on with it. But it’s killing me (metaphorically) working so hard to finally be slimmer at last and well, not being because my stomached gone crazy on me. Sorry that’s really superficial and vain but I can’t lie, it’s what’s distressing me the most. That and the pain. Every bloody day! I’m exhausted feeling so sore without any respite from it ever. I’m sure a lot of you will understand how that feels, and I’m so sorry that you do.

Okay, to address some other things raised, I am already completely gluten and lactose free, so why this should have suddenly started is a complete sodding mystery to me!! I can’t see (IF it’s food related) HOW??? My diet is already very careful for things I might react to. I was also tested for coeliac’s but that was negative. So not coeliac bit already following a strict gluten and lactose free diet left me and my doctor unconvinced it was anything to do with food.

The other thing was ovarian cancer. It was a genuine possibility as I am displaying all the symptoms. Abdominal distension that is extreme and constant. (Ie never goes down, then bloats up again). I need to wee far too regularly. I have pelvic pain (as well as bloated tummy pain). I am frequently vomiting or feeling nauseous. I do feel uncomfortably full after very little food. There has been a notable change in my bowel movements. And the list goes on. Not to mention I am at significantly higher risk of breast cancer as I have string family history and genetic issues that increase my risk of developing the disease so much so I am under the care of a ‘family history and genetic cancer prevention centre’ and I’ve just learnt (since this stomach distension) that being at greater risk of breast cancer puts me also at greater risk of ovarian cancer, as the two are linked apparently. There’s more too, though so far always been benign I have also got a history of tumours myself. Though benign my most serious was a teratoma tumour that grew to the size of a water melon very rapidly and I needed to have emergency open surgery to remove it to save my life! (It was going to rupture my insides) It started at my right ovary. So an ovarian tumour. In that surgery I lost my right ovary and part of my womb as the tumour has grown around them and they could not be saved. So all of that and my symptoms definitely pointed worryingly at ovarian cancer. But I had an ultrasound scan that gave me the all clear, my remaining left ovary appears in good health, as does my womb and all around that area that had concerned us. So it’s not that, thank goodness!! There were no signs of cysts or anything else of that nature either.

Also, I am now strictly following the low FOD-MAP diet to try to rule out any foods (other than gluten or lactose) that I might be reacting to.

As for my doctor calling this “a severe form of IBS” I honestly know absolutely nothing at all about IBS, which is why I’m here to try to learn more about my new diagnosis, but I too am unsure what she means, and will ask her to be more specific when I see her next. From my looking on the internet Ive learnt you have IBS-C, IBS-D and IBS-M (which I’m now feeling I relate to though it was for a long time mite like IBS-C, so I don’t know which I am. Again I’m going to ask my doctor to be much mite detailed and specific next time, I feel I know nothing about what she’s told me I’ve got.)

Also the fluoxetine (Prozac) why won’t that help? It’s in the NICE guidances that amitriptyline is used to treat IBS and my doctor said the fluoxetine is comparable and since I’ve had it in my past with no bad side effects long term or issues she felt happier to give me that again instead of introducing my body to a new unfamiliar drug that I may or may not tolerate well. She said they would do exactly the same job, so made no difference other than just knowing I tolerate fluoxetine well vs amiitriptyline which we of course don’t know if my body would react well to that or not? But this course of treatment for IBS is in the NICE clinical guidelines. So may I ask why, LCat, you feel sure it won’t help? Have you had a bad experience with it yourself? Did it not help you? I’m concerned now if I should ask for amitriptyline instead?? Since that is the one mentioned in the NICE guild lines, this has made me question shouldn’t that be the one I should be on? And was it a mistake her giving me fluoxetine if they are not the same? She said they should do the same *job* though, but now I’m concerned will it not? I may ask to switch since she says either was an option she was happy to prescribe. Please, anything you know that made you tell me that fluoxetine won’t work please can you share with me? Please? I don’t want to be taking pills that ultimately don’t help, what would be the point? I want to be taking (if I have to) what WILL help.

Thank you SO MUCH all of you for your wonderful replies. I so appreciate it!

xxxx

Hey

Sorry could i just ask u if u have been on alot of antibiotics just before this all happened or since?

Only reason i ask is i was and it turned out i had candida/sibo which started all my problems off.

Also may try some peopermint cap, probiotics and digestive enzymes

I don’t think enough tests have been done yet to rule out other causes. An ultrasound won’t show enough things up—you really need a CT scan. Did your doctor do a CA125 test? The thing is, you can have other cancers that behave like ovarian cancer but don’t involve the ovaries—primary peritoneal cancer is one. The fact this has come out of the blue makes it less likely to be IBS. I really would be pushing for a second opinion.

Lulububs you describe exactly how I feel! I feel like my body is poisoned!! Under attack and losing. And the constant pain, can’t sleep because of it, and it never going away. And I go between d and c. Started very much all c, but now very much flipping from c to d. But no change in my distension.

Im glad you’ve found something out for yourself that helps you avoid the triggers! I’m sure that doesn’t mean it’s all no problem for you anymore, but it must be a relief to know exactly what to avoid? I’m glad for you. (I too never ever touch bread! Nasty stuff!!) I cut bread out years ago now, it was the first thing I started to notice my body really rejected badly, I had such problems digesting bread. But the bloat was only ever temporary, few hours then gone. But never eaten it since I finally decided to cut it out permanently. I have also since gone completely gluten free and lactose free. I was reacting to both. But that was quite some time ago, long before this episode of abdominal distension and now my new IBS diagnosis. So what the hell is causing my episode now I’m flipping clueless about!!!??? But I am seeing a dietitian (about my IBS) soon, I’ll ask her if they can screen for other things? Also I’m doing the low FOD-MAP diet, so that might shed some light on what my body will and won’t tolerate?

Thanks for your response!! Really appreciate it! xxx

I wander if u may have a case of candida /sibo. It wasnt till i got diagnosed with that and i had to detox for 6 weeks( hard work) that i really noticed the difference in my symptoms.

It when u have a bad gut bacteria can b due to tablets or painkiller the pill or mostly antibiotics.

Mine was antibiotics ... it literally killed all my good gut bacteria and what grows instead is a yeasty bad bacteria and it kills ur digestive system.

I was so ill.

I detoxed for 6 weeks after diagnosed and u actually see it dying of in ur 💩. It not nice but it easily killed off then u have to overload with good bacteria to make ur gut healthy again. Ie probiotics, live yoghurt, digestive enzymes.

After all that i just make sure i keep a healthy gut it generally keep it all in check with the gluten lactose and yeast free to.

Plus weight just drops off

Jay5106
Jay5106
in reply to Lulububs

Hey i was diagnosed with sibo aswell how exactly did u detox to get rid of it if u dnt mind me asking? I started a colon cleanse but it just causing alot of diarreah making me feel weak from all the weight being lost and i was wondering if that was a die off sign? Doc wants me on antibiotic but knowing thats wat causes it has me not wanting it. They dont care about that. Please any help would be appreciated

Lulububs
Lulububs
in reply to Jay5106

Yes i got diagnosed three years ago roughly.. it not really a recognised thing but they are beginning to realise without gut health this is where alot of probs in body stem from....

I had constant antibiotics through life as i suffered with sinus problems.

Always had stomach pains..

3 year ago it went mental.

Got really bad tooth infection and then did my back in so got naproxen...

IBS went through roof ... literally went from 9st to 7 in 3 Months

Ended up calling ambulance one night which was good as i got a outpatient app with a gastro.

Luckily one that recognised it was symptoms of bad gut health brought on by to many pills basically!

So i got a 6-8 week food plan it not easy... but it 6-8 weeks and once u do it u wont look back.. i not had any ibs ... dermatitis... sinus infections... colds anything since...

1. No bread.... no beer ... anything with yeast in. (Feeds bad bacteria)

2. No alcohol

3. No sugar( or as little as u can do)i did none

4. No red meat.u cannot digest it make u stomach work harder.

5. Eat healthy!!!!!

Then u need supplement to kill the bad bacteria and replenish with good.

1. A good probiotic( it may make u poop more at first but it ut gut fighting it)

2. Peppermint oil capsules.

3. Good digestive enzyme.

4. DIDA... it a tablet that actually has all things that bad bacteria hates in it.. still use all these to date , 3 years on.

That what i did...

it hard but within 3 weeks i could eat abit without running to toilet, the pain was down 50% by time i went back 8 weeks later i was a stone heavier and had no ibs problems at all...

I still stick to some.. ie no red meat... alcohol on rare occasion and NO BREAD.. urgh it make

Me feel Sick just thinking about it.

It hard but works...

So if u need any pointers food related ideas Get in touch

Lulububs, no antibiotics, no. But I am definitely going to try the probiotics!!!! Have you tried them? Which? How do you find them? Do they help? I feel certain that must help! Particularly with being sick so frequently and for weeks and weeks now, my stomach must be stripped bare of all the good bacteria it needs. So Ive felt certain that was going to something I tried, so you’ve confirmed for me that’s not a bad plan. Thank you! xxx

I use holland and barratt dairy free probiotics or bioglan gut flora it good to keep changing them as some have different strains of bacteria. So never keep to same as ur body can get used to them. Also optibac are good! I took double recommended amount at first so it really got in system and fought the bad bacteria. Some people find at first they can get abit upset with it as it doesnt like it but mine seemed to want it...

So b aware just stick with it for couple weeks. U may get D as it may try to empty u of bad toxins.

I also take a good digestive enzyme half hour before i eat it breaks down fat and helps u digest easily. Also a good peppermint capsule aswell it stops indigestion and wind💨.

It a balancing act really with me... as mine seems to go between. C &D.

Im not saying im healed as i still have bad days but there about once every couple months now for a day then it seems to just go.

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