Long term IBS sufferer being referred to rapid dignostic clinic

[Metallimel]

Hi,

I have had IBS(C) for over 30 years following surgery for Appendicitis aged 10 (which nobody believed me about and I had it for 1.5 years with everyone saying I was a time waster/attention seeker, until I nearly died).

I get horrific pain, bloating, all the usual stuff, but also I can become so unwell during an attack that I can pass out. I've been managing it myself for decades as doctors are just not interested. I gave up on them years ago. It took me 10 years to persuade them that my periods weren't normal, before they relented and gave me a hysterectomy "to shut me up". Turns out I had severe Adenomyosis. Major red faces all round in my GP surgery. So I don't generally bother with the docs. I am on low dose painkillers for a long term back injury, but they won't investigate that either, so i take my script and ignore them.

Now I've been quite ill recently. I've started having lots of issues, including being so tired I'm exhausted all the time, my balance is off, and I've lost over a stone in weight for no reason. My usual weight is only about 53kg so I don't have extra to lose. I'm now 44kg.

I figured I'd have to bite the bullet and see my doc. I was very shocked to be taken seriously. Bloods done immediately, which showed I have a folic acid deficiency. Now I have to do a FIT test, go to the rapid diagnostic clinic for a scan, and whilst they haven't directly said what they are looking for, I am guessing it's bowel cancer.

My IBS would mask every single one of bowel cancer symptoms, so I can't go by my bowel habits. What i don't understand is why I have a folic acid deficiency. I eat pretty well, I've always enjoyed leafy veg/salad, and I eat liver a lot (one of my faves!). All this means that I am pretty worried about the cause of my recent issues. If anyone can relate I would love to hear your stories (positive or negative!). I suppose I'd just like to have some people to talk too.

[bantam12]

Well I can certainly relate to being ignored by all the Drs ! Sadly there is huge gender bias in the medical profession so being female we are automatically seen as hormonal hypochondriacs 😠

It took about 30 years of being fobbed off despite 2 emergency admissions and surgery for peritonitis to finally see a Dr who took notice and diagnosed me with ulcerative colitis. Likewise with my heart problems, for several years told it was all anxiety so go away 😠 then oh yes you do have heart disease and need a pacemaker ! still got discharged with no follow up afterwards ! My late husband had lots of medical issues and I could see how differently he was treated being a man, even by the same Drs we both saw !

So after that minor rant and that’s the shortened version 😆 back to your problems.

Folic acid deficiency is very common, mine was rock bottom and probably still is as I’m intolerant of all supplements but hey ho. As for your other issues, they definitely need investigation but it sounds like your Dr is on the case and things are going to happen, easy for me to say but try not to stress about the possible scenarios, worrying and overthinking won’t achieve or change anything, wait and see 🤞 I learnt a long way back that being proactive is the only way to get things done especially now when the hospital system is in tatters, so if you need to stamp your foot or pester for results and appts then do it. Keep us posted and good luck 😉

[Metallimel in reply to bantam12]

Hi! You are absolutely right about medical bias against women. It's still horrendous out there.

Thank you for the kind words. You are right that I shouldn't stress. I'm not usually a "stress when there is nothing I can do about it" kind of person. I only stress about the things I can influence usually. Things tend to sort themselves out in the end. This is a bit different for me, but I'm trying to stay my usual self.

Hopefully it'll be OK and I can go back to normal. Most of the time I'm fine, not worried, rationalising that the odds are forever in my favour and with some supplements I'll be normal again, for a given measure of normal. Every so often though I get this horrible fear and I'm convinced I'm going to die. I suppose that is probably normal, given the circumstances, but that is the bit I really don't like. I don't care about pain, I have been living with it for years. I'm not worried about the possibility of treatment either really. I just get this heart-stopping, paralysing fear of not being there for my kids and hubby anymore. The human brain is a treacherous organ and I wish it would shut up.

Thanks for reading my rambling posts though. Just getting to write things down and knowing another human being has read it and gets it is invaluable therapy. <3

[bantam12 in reply to Metallimel]

I know about the fear 🫤 I have a splenic aneurysm which the Drs are of course as usual dismissing because I’m a menopausal hypochondriac and not worth wasting their time on 🤦🏻‍♀️ but I’m scared it’s going to go bang one day and that will be it very quickly! I’m now on my own as my hubby died 3 years ago and my daughters are all some distance away so nobody around to know I’ve dropped dead and the dogs need a walk and a wee 🥴

But on a more positive note my Mum had bowel cancer and she had one op which sorted it and she lived another 30+ years to the rip old age of 95 so it’s not necessarily the end of the road. Life is a challenge and keeps throwing curve balls, we just have to keep dodging them best we can.

🌻

[Metallimel in reply to bantam12]

That sucks. Being dismissed like that with what can be a life-threatening issue is awful. I really hope you can find someone who take you seriously. I feel quite lucky that I have found a GP who took me seriously straight away. I'm not sure if it was the symptoms or her being good at her job, but for the first time I feel like someone listened to me and treated me like a person rather than a nuisance.

Finding a doctor like that shouldn't be this hard. Being a woman shouldn't be a barrier to good health care. I hope you can find someone to take you seriously. <3

[GCCA-Survivor Administrator in reply to bantam12]

Thank you for your input on Colon Cancer Connected. It is very helpful and sympathetic. It's always good to hear from others that have had similar situations and can share their journey. I do find it concerning about the treatment of women inside the UK healthcare system. It seems like you have to get louder to be heard. A squeaky wheel gets the grease, but it's sad that this is dealing with a healthcare system.

I am happy to see your mom's track record having had bowel cancer. I am sorry she has passed away, but I hope I do as well as she did in longevity.

What can be done about a “splenic aneurysm?” Is it a surgical procedure that the doctors are ignoring? I hate you feel that this is being ignored for you.

Tom

[bantam12 in reply to GCCA-Survivor]

Hi Tom

Thanks for your message. Yes the aneurysm needs surgery but the last Vascular Dr dismissed it without even seeing my CT scan images or report which is about what we have to deal with !

I’m waiting for an appt with a different Vascular Dr but I don’t hold out much hope it will go any better. Sadly our medical system is in a mess right now and getting anything done is even more of a challenge but all we can do is keep pushing for answers.

Stay well and take care

🙂

[GCCA-Survivor Administrator]

Hi Metallimel,

Thank you for posting on colon cancer connected. I hate that you're having to experience all of this. You; and as I can see others, are not only dealing with your personal health issues but you're also having issues dealing with the health care system. I'm a big advocate that the symptoms need to be evaluated no matter what stage of life you are in. It shouldn't matter if you're male or female, it's the symptoms that need to be focused on.

When I was going through my cancer fight, I found that I was in a good area to deal with cancer. I didn't realize it at the time, but there are three Cancer Research hospitals within 60 miles of my house. The local cancer centers were very good as well. I started out at a local Cancer Center and after two years ended up in one of the research hospitals doing a clinical trial. That clinical trial ended up saving my life. Since cancer entered my life, I can see that others in a cancer fight have not had the same experience that I had. Where you live shouldn't determine if you live. I'm a big advocate for early detection and patient’s rights. No diagnosis should be based on age or gender.

You did state that the symptoms you're experiencing may be masking all of those that may point to your issue being bowel cancer. That could possibly be true. You are aware that what you are experiencing could be caused by many different things and it's good to be aware of that. And I see that you just want the testing done to figure out what is going on and get you some good answers. I hate to see that the healthcare system that you have to deal with is not giving you many reasons to be confident. I also see this from some of the responses to your post indicate you're not the only one. And I must admit I do see others as well in other posts having to deal with some of the same issues. Women are not “hormonal hypochondriacs” and should not be treated as such. For a patient to conclude that they were treated like that is very concerning. And from the looks of things, you are not alone. I am glad that you finally found the GP that is taking you seriously and hopefully will guide you to the answers you're looking for.

The medical bias you are seeing against women needs to be addressed. I know since it is nationalized healthcare it may be difficult to do. Some information you may want to share is how you managed to find a GP that would take you seriously. That type of information alone may be helpful to others on this site. I am curious on how you did that. I see a lot of people that feel they are locked into a certain “assigned” doctor that they must deal with inside the healthcare system. I am in the states, so I am not sure how flexible the NHS is and allowing the second opinion. No doctor should be against getting a second opinion. You did say “finding a doctor like that shouldn't be hard,” yet you managed to get this done. How you did that I think would be useful information. I do know that sometimes taking your health care private is a way around the nationalized system. But I would hope that there's a way to deal with things inside the “system” that is supposed to be a healthcare umbrella.

It looks like you've been in a health care battle for a long time. I hope that what you're experiencing now with the GP that is taking you seriously will lead you to some good answers. I do hope that that gets you on a path to be well. Please do let us know what you find out because it's information like that that could be helpful to others on this site. I'm glad you are being taken seriously and that you feel that way as well👍❤️. This should lead to positive things.

We do wish you all the best. We hope that your navigation of the healthcare system improves, and you don't feel like your issues are just being pushed down the road. You and bantam12 have said a lot in this post. I hope you will not experience any more of those difficulties in the future. 👏❤️

Thank you,

~Tom, GCCA Survivor - Colon Cancer Connected Site Administrator.

Just a reminder - this group is here to offer support, share experiences, and offer our thoughts - but this is not medical advice, and you should always consult your medical professional(s). Additionally, for all emergencies, seek urgent medical care, never delay.