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My story - where do I go from here?

Hi everyone :cheers: My name is Helen, I am 43 and I live in the UK this is my story so far any advice would be great.
I have always had problems with bowel movements, I used to go about 10+ times a day, always with urgency. Since September this has changed. I started having no appetite and feeling really bloated. After a sandwich it felt like I had ate 10 Christmas dinners and I started having really bad night sweats.
My bowel movements changed from being easy to go to struggling to go. It was still loose but just hard to get out. Then I started bleeding not just a few spots, a lot. My rectum was extremely sore so I went to my doctors. She examined me and said I looked very sore and had fissures. She referred me to consultant and said I should probably pay to get seen quickly.
So I went privately and saw the consultant. I was in there 5 minutes and he said he knew what I had before examining me, he looked at my bottom and couldn't examine me properly because it was spasming too much but he said he knew problem was fissure and sent me away with some rectolgesic gel and stool softener, didn't listen to any of my symptoms.
My blood tests came back normal, the gel didn't make things any better so I went back to dr and she referred me on NHS. I ended up seeing same consultant. He still said the same thing and didn't listen to my symptoms (I had written a long list) but referred me for a sigmoidoscopy ( to dot the i's and cross the t's in his words).
10 weeks later (last Friday) I had this done. (it took 6 minutes) He said my bowels are fine, I said what about the bleeding, change in bowel movements, night sweats, bloating and abdominal pain. He said I can't answer that but your bowels are clear.
I also have hidradentitis supportiva which I know can be linked and I have been diagnosed with arthritis in my knees in the last year. I have been tested for menopause( because of night sweats) and it is not that.

So I just wondered has anyone got any advice where I go from here? I am in so much pain going to the toilet, all I want to do is sleep but waking up with a dripping bed isn't much fun. Thanks everyone for listening I know it is long and you all got your own problems going on.
 
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I may not be of much help here, as I'm not sure on any of this, but taking a shot. It could be that you have internal hemorrhoids? This would explain the bleeding, pain, and inability to pass stool (as they would be blocking the exit, so to speak) and then that would cause your bloating and stomach pain. The inability to pass stool, despite it still being loose, could also be caused by rectal muscles malfunctioning and tightening when they shouldn't be. I have that problem, and it took 6 years for them to figure it out. They said it was likely caused by having frequent loose stools and forcing my muscles to tighten so I could hold it (hey, it's not always convenient to go), which confused/damaged my muscles, making the levator muscle (one of the inner bowel/pelvic floor muscles) tighten and spasm. I now take medicine for the spasms and do physical therapy to try to strengthen and retrain the muscle, as from all the tightening, it has become very weak, and can't support things the way it should. I hope some of this makes sense.

Anyway, the muscle issue could account for your difficulty in going, and the pain, but not account for the bleeding. So I'm uncertain. These are perhaps just things to mention. You have to really advocate for yourself- if you feel the doctors aren't listening, tell them as politely, but bluntly, as possible. Make yourself heard. If they refuse to hear you out, then seek another doctor.

If you aren't a member already, there's a great group on facebook called 'Get your belly out'. Most of its members are in the UK, and there are a lot of members, and a lot of activity, so perhaps join the group, let them know what's going on, and maybe someone there can help shine some light on your problems, or at least refer you to a good doctor if you happen to be in the same area as another/other members. Just do a facebook search for "get your belly out" and it should pop up as a closed group, just request to join, and then post away. The group is awesome and very supportive. I hope this helps!
-Autumn
 
Thanks Autumn, I will look into that group. Not sure about the internal haemmoroids as no one so far has said I got them - but perhaps they just didn't bother to let me know lol. Thanks for taking the time to reply. :)
 
Hi Charmed, I'm sorry you are going through this and that all the help you got was a referral to this doctor because he doesn't sound either caring or interested in his patients or (very importantly!) competent. He really hasn't investigated the cause of your symptoms or the cause of the fissure. A sigmoidoscopy only looks at the end of your bowel and so even if they see nothing unusual with that it tells them absolutely nothing about the rest of the bowel which they are not looking at!

I'm in the UK and I have seen some seriously bad doctors but I would whole heartedly recommend Guy's and St Thomas' where I currently am a patient. I don't know how far away from you that is but many people do travel a long way to be seen there. I'm sure there are others here who can recommend their doctors and hospitals in the UK too if you are looking for something closer. You can ask for a referral from your GP. I would make it very clear that the doctor you saw did not thoroughly investigate your symptoms and I would make a complaint about this if you feel able to. I think it sounds like there are quite a few causes that he did not rule out and that he is actually negligent.
 
Hi 24601 thanks for the reply. I am in Wales so I am not sure if they would see me in England because of NHS being different here (not for the better free prescriptions come at a price -longer waiting lists, less available drugs). I would travel if I was able to seen there as I can't go on living like this, I have 2 children with aspergers to look after and my poor husband is having to do more than his fair share of stuff as well as working in a very difficult job. Thanks for taking the time to reply to me I really appreciate it. I can only manage 1 meal a day and sometimes that is just a sandwich so I'm sure there is more going on than the fissure the consultant is so obsessed with.
 
Charmed, I sent you a PM. I hope that was ok! I definitely think there is more going on than the fissure and certainly more investigations should be done to rule out other causes and explain your symptoms. It's not reasonable to expect you to live with them and it is my concern that things will only get worse without identifying the true cause and having proper treatment.

I have met patients from Scotland who have travelled to St Thomas' so think this may well be possible for you too.

Keep us updated!
 
You shouldn't be needing to go private or consider travelling long distances, it's ridiculous that you've been made to.

I would question a GP who advised you to go private. If the GP really thought you needed to be seen quickly, she should have referred you for an urgent appointment on the NHS. The urgency of the situation is a big factor in NHS waiting times.

Haemorrhoids should have been detected with the sigmoidoscopy. If you think the doctor may just have neglected to tell you, a GP should be able to do a digital-rectal examination which can sometimes identify haemorrhoids and other rectal abnormalities.

What exactly does the consultant say about the fissure and what may have caused it? Have you had a stool test to check for blood, or is the consultant assuming any blood is coming from the fissure? Though it's odd if he knows you have a fissure but doesn't think that explains the bleeding. Or have I misunderstood?

Did you ever see a doctor about your bowel problems in the past? Going so often, you must have known something hasn't been right for a while.

I would try a new GP if you have any doubts about your current one, and ask to be referred for a second opinion from another consultant. You deserve answers and proper treatment.
 
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I had all the symptoms you mention, before I was diagnosed with Crohns via a colonoscopy. (Although my BMs went from normal to soft to pudding to liquid to 15/day over a 6 month time span, and I lost 1/3 of my body weight.)

I suggest that your next step is to have a colonoscopy to check your entire colon and the end of your small intestine (terminal ileum) for suspected-Crohns. If your colonoscopy is clear, then I suggest your following step is to have a CT scan of your abdomen to check for suspected-Crohns in your small intestine.

These tests can also diagnose other conditions which might be causing your symptoms such as gallstones, stomach ulcers, cancer, etc. If you can't convince the NHS to do these expensive tests, then you might want to consider looking online for a private clinic to do the tests (if you can afford that option).
 
Thanks UnXmas and BlindLogic for the replies.I have been to doctor about it in the past and they have just said IBS probably and when I've bled probably haemorroids and sort of not took much notice. Yes I do think he thinks the blood is coming from the fissure because that is all he talks about the fissure. He just dismisses anything else. The doctor did refer me urgently on the NHS after I intially saw him privately and I ended up seeing the same 1 on the NHS, so had same examination (the private one he actually talked to me first before getting his finger up !!!) I saw him about 6 to 8 weeks later on NHS, he didn't remember me, although I suppose one bum is much like another as he didn't really look at my face on the NHS appointment! He is a colerectal surgeon and I wonder should my doctor have referred me to a Gastroenterologist instead. But from what I understand after the sigmoidocscopy he just felt it was a fissure and wasn't interested in other symptoms and that was it, no future appointments or follow ups so if I want more investigating I have to go back on waiting list. I am sure everyone in my life is sick of hearing about my bum, poo, stomach and sweats because I am boring myself about it.:shifty-t: Again I really appreciate you both taking the time to replay.
 
Bless you, could see you were up so early! If not child related than bowel related :-( everyone's advice regarding getting your GP to push, and being blunt is unfortunately correct. I am lucky this time round, my GP is pushing with me but I haven't pushed before and it has meant years of unknown symptoms (which I've gotten great at ignoring and excusing).

Keep calling you GP (I do) pushing for tests, for example faecal cal protection (if already not had). Get your GP to refer you to another consultant at the same hospital, and if you have the time complain to PALS (you can do this by email). Call the hospital and see if the have any cancellations, it's a lot of leg work, especially with children but it does work (as I am finding out- my little girl is 16months and thankfully my family are helping and pushing me to push).

Whilst doing this stay ahead of them by keeping food and symptom diary and also maybe ask to also be referred to see a dietitian to see if there is any trigger foods (low FODMAPS is gaining a lot of ground). For example maybe bread or dairy is upsetting you (very doubtful but if you show you are trying everything then they will have to look at other areas). It is so frustrating, I really know- I am going through this right now, I am also a dietitian and have been told my symptoms are probably ibs and they are goin to refer me to a dietitian for low FODMAPS (but also I am having a video capsule endoscopy on Tuesday- I was insulted when they said the low FODMAPS thing as I have tried all dietary and lifestyle measures). Unfortunately the consultant doesn't know you and makes a quick judgement in a short space of time, for my next appointment I will keep a food and symtoms diary and hopefully avoid the shame of being referred to a dietitian (being that I'm qualified).

Good luck, if you need any advice PM me- right now my stomach is keeping me up :ywow:

Edit: just wanted to add there is nothing wrong with being referred to a dietitian, it's just it would be frustrating for them and I, as for IBS I am trained. If I do in fact have IBD I am not (specialised field). Sorry don't want to sound arrogant
 
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Hi Sarah,
You didn't sound arrogant at all I knew what you meant:) (My health visitor referred me to paed for youngest because of signs of autism when he was 3 and his older brother had it. The paed suggested parenting classes. I was a teacher, primary and nursery I was so insulted I went to GP and asked for 2nd opinion.) It seems much easier to fight for your children than yourself. It must be really hard for you to deal with your problems, having a 16 month old. I am struggling with my 2 boys, especially the younger 1 who needs a lot of attention and emotional support. The older one is doing his a levels this year so also needs a fair amount of support and I am just struggling to do anything even cook for them. It is so hard to cook (and I love cooking) when you just don't have an appetite. On a positive note I have had a fringe cut into my hair the first since I was 18 and I'm sure if I like it so it has given me a distraction from thinking about my bum lol. Thanks for replying it really means a lot.
 
I know exactly what you mean regarding pushing for your children, and also not wanting to cook when you've no appetite (I quite often feel like I can't do anything and all of a sudden my little girl wants something and I'm superwoman). It really sucks to have to do all this legwork/pushing especially when everything is already much harder as your not well.
 
I'm not a parent, but I think by pushing for medical care for yourself, you are doing so on behalf of your children as well - they want their mum to be healthy if possible.

He is a colerectal surgeon and I wonder should my doctor have referred me to a Gastroenterologist instead.
I think a colorectal surgeon is the right person to deal with the fissure (though not the particular colorectal surgeon you happened to get). I've had a lot of rectal problems and have always seen a colorectal surgeon for my rectal problems and a gastroenterologist for the rest of my digestive system. Though while I found a wonderful colorectal surgeon who has seen me through several years and about ten surgeries, I still don't have a regular gastroenterologist, as I've only ever found bad ones, despite seeing so many, so I've never stuck with the same one for very long. Now I've even managed to find a second wonderful surgeon, as I needed emergency surgery so it just came down to luck that she operated on me. With two surgeons and a very good GP treating my digestive system, I'm not bothered about finding a gastroenterologist too, but my GP is very insistent I keep going to them.

Finding the right doctor can be a challenge, but there are good ones out there. You're entitled to see a different specialist for each medical problem you have, so if your consultant is saying your other symptoms don't have anything to do with the fissure, your GP should be able to refer you to a gastroenterologist or other relevant specialist for your other symptoms.

A fissure doesn't necessarily mean Crohn's, and there are many possible causes for your symptoms, but if you can get to see a gastroenterologist they may be able to work out how the fissure relates to your other symptoms. I have very complex medical conditions (plural!), and have found some consultants like to focus on their area of expertise only, but a fissure is something a gastroenterologist should know about as well.

I suggest that your next step is to have a colonoscopy to check your entire colon and the end of your small intestine (terminal ileum) for suspected-Crohns. If your colonoscopy is clear, then I suggest your following step is to have a CT scan of your abdomen to check for suspected-Crohns in your small intestine.

These tests can also diagnose other conditions which might be causing your symptoms such as gallstones, stomach ulcers, cancer, etc. If you can't convince the NHS to do these expensive tests, then you might want to consider looking online for a private clinic to do the tests (if you can afford that o
Hi BlindLogic, unfortunately, you'd need to be very, very well off to afford tests. But it isn't necessary, there's no reason Charmed can't have them on the NHS. In the UK, to have tests done privately, or even to have an appointment privately, the doctor has to justify it medically, exactly the same as they have to justify medical need on the NHS. E g. for a GP to refer a patient to a gastroenterologist, the GP has to identify symptoms and/or test results that warrant a gastroenterologist. And for a doctor to order a test for a patient, they have to identify symptoms and/or other test results that warrant the test. It makes no difference if the patient is private, the doctor still has to provide a medical reason, and if they can provide a medical reason, then they can make the referral or order the test on the NHS.

But the vast majority of people are not private, and there's no reason Charmed should have to be either.

I hope you get things sorted very soon, Charmed.
 
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Hi everyone,

An update to my story. I saw my G.P. this week who said as my sigmoidoscopy didn't show anything and my blood tests haven't that I definitely don't have IBD. She said the bleeding is from the fissure , the bloating, pain, diarrhea and constipation are probably IBS. She also said my lack of appetite and stomach pains are probably depression? She is sending me for chest xray to rule out lymphoma as she couldn't explain night sweats. I asked her if there could be a problem further up than sigmoidoscopy could see and she said no because I am bleeding fresh blood. But surely if the fissure is bleeding fresh blood the other symptoms could be further up. I also don't think I am depressed just fed up of the pain. So the saga continues.
 
I'm sorry you got such an unhelpful doctor. I hate it when doctors try to tell you how you're feeling and dismiss physical symptoms. I guess she's correct so far as saying frresh blood (bright red blood) wouldn't come from further up the digestive tract, but that doesn't mean there aren't other things further up that aren't right. Not that I'm a medical professional or anything, but it seems a bit of a coincidence for you to have a fissure, and IBS symptoms, and digestive problems caused by depression.

Are you going to try another GP or ask for a second opinion from another consultant? I know how tiring it is when doctors make you feel like you're asking for more help/investigations than you need. You're not. Sometimes you may have to just ignore one doctor's reaction when you ask for another referral, and hopefully you'll get to see one who listens to you.
 
Hi UnXmas,

It is strange because she is usually a good doctor and is very nice but last time I went she said that she was concerned I was overly anxious about my health. She just seems to think because the blood tests don't show anything I haven't got anything but surely if things were easy to diagnose with a blood test none of us would need any other tests? She also suggested doing the fodmaps diet so I have bought the books and will try that as it can only help. She gave me Amitriptyline 10mg for pain relief. It is just worrying as you hear all these stories about people who went to drs lots of times and weren't taken seriously until it was too late. Thanks for listening.
 
Ok, well maybe if you give her another try she'll come up with some better ideas.

Some people do go through a difficult time getting diagnosed. Basic tests like blood tests usually give a doctor a general idea of your state of health, so they can indicate that nothing immediately serious is likely to be going on, but people can have awful symptoms which interfere with their quality of life while test results show them to be "healthy" - e.g. normal blood tests can rule out severe inflammation, infection, nutritional deficiencies, etc. So with normal blood tests doctors have less reason to order more invasive tests to try to find a diagnosis. So if your symptoms are affecting your life, you may find doctors need a bit of convincing to investigate further and/or help you with symptom management. And if you are concerned that something serious has been missed, you're entitled to make that clear to your doctors too - you need to be sure, even if it's just to give you peace of mind.

The forum has a support group for Amitriptyline, if you're interested in finding out more about it: http://www.crohnsforum.com/showthread.php?t=47926
 
For me this GP would get a red card based on her spurious 'depression' diagnosis. Even if you were depressed it would be silly to think that the pain and illness hadn't come first and caused the depression.

She may be nice and all that but right now she doesn't seem to be giving you good treatment. I admit I'm influenced by the bad non-diagnoses I got from GPs who were otherwise nice but I think I'd kick her to the curb on this one as what you need is a doctor who listens to you when you say your symptoms are not from depression and makes sure they find an explanation for all the symptoms. And not some complicated set of largely unsubstantiated diagnoses like IBS + a fissure + depression related GI symptoms. As UnXmas so rightly said that does seem like a bit too much of a coincidence.

Edit to say: telling you that you're 'over anxious about your health' is completely unreasonable. You have symptoms that could signify something extremely serious - she's even acknowledged that potential for night sweats indicating lymphoma. You have a right to ask for these serious causes to be ruled out for yourself and your children and everyone who cares about you. There is no justification for her saying that you are over anxious.
 
The other thing I forgot to mention talking about coincidences is that I have quite large a visible swelling where my stomach organ is, which is the same shape as the stomach organ. This has developed since all the other stuff has started. The doctor and consultant both have said its just a lipoma and nothing to worry about. The ultrasound didn't show anything.
 
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