Not getting any help and feel so alone.

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StarGirrrrl

StarGirrrrl

Joined
Sep 20, 2010
Messages
2,070
Location
UNITED KINGDOM
Well it's been 9 weeks since I was told I had IBD and not IBS, and 7 weeks since the report was sent to Gastro. I still have not heard anything from them about an appointment and getting iller by the day. I tried a meal tonight (boiled rice and plain naan bread), first time in at least 2 weeks, and nearly passed out from the stomach pains after. Grazing all day seems to suit me better now but by 6pm I am fed up with eating and don't want to do it anymore!

The A&E Dr couldn't get them to give me an appointment when I went there 2weeks ago, have made an official complaint (awaiting outcome), a letter from MP is going out next week and my GP is going to chase but have run out of options. It seems I have no option but to wait and wait and wait and hope they deign to help me. They are the ones who made me so ill and now they will not help. In the meantime I am beyond exhausted, in pain (abdominal and shoulder joint) and not able to eat correctly. Getting out of the house once a week at best, have to have urgent stuff to do and really motivate myself.

To make matters worse, my grandad's great neice who has Crohn's is apparently doing great, 3 months on meds and she's as well as she's ever been and back at work. Well fanbloodytastic for her! I just love hearing about people getting help when i'm not.

Just feel so alone. :(
 
My love, you need to get yourself another GI. I'm so sorry that you are going through this. A really important lesson everyone with IBD learns some way or another is that you have to open your mouth and fight for yourself. If you are going to stand back and wait for stuff to happen you are going to be a very unhappy person.

You sound like you need to get a treatment plan ASAP and a good GI will do that for you. You'll see once you start treatment you'll feel better and you wont be in such a very dark place anymore.

I totally understand where you are coming from though.

Take care...xx
 
What I would do is call everyday and be polite but not hang up until you get satisfaction. If that doesn't work I would go there everyday be polite but persistent and not leave til you have satisfaction. That tactic has worked for me and works even better if people are behind you waiting. Take charge, the only person that can really look out for you is you.

Good Luck
 
Thanks for the advice. Will start calling soon as I don't know where the Gastro clinic is held now and they wouldn't give out that information I think.

Only option I have is to go to the same department (although I have been sent to another GI, not the one who told me I had IBS), I cannot afford private care and I can't travel to another Hospital (who would only say they can't see me due to location rules).

Now they have failed me twice yet I must continue to put my trust in them.

Am just so tired, why is it so hard to get help!
 
I don't really know why it can be so hard to get help. I think most of us on here have been down a similar road as you. What we've learned is to be persistent like Ahumado said by constantly calling (everyday) and asking to be seen as soon as possible. You're only other options would be to ask you GP if there is someone else you can go to (perhaps in emergency type situations the doctors that are further away may be able to accept you as a patient and not send you away because of your location) and use the emergency room when needed.

Stay strong and stay persistent. I know some people on this forum have mentioned that crying helps when talking to someone to get an appointment sooner. Try tugging at their heart strings if they have any left.
 
Hi Stargirrrrl. I was in a similar situation a few months ago. The frustration of not being seen by anyone is so awful. I just kept being sent to the nurse at my GPs surgery who told me to get such things as heartburn tablets (I had no symptoms of this) and each week I saw her she said that she'd make a referral the week after. I got sick of this and saw a new GP who to my luck was fantastic. He did talk about sending me straight to hospital as an in patient to get sorted but decided just to refer me.
Have you seen a GI yet? Ive had a mixed relationship with the 2 GIs I see but finally seem to be getting somewhere.
Do not give up hope. You will get sorted soon I hope. I agree with others and think you should keep phoning up and chasing your appointment. Explain how ill you are too. I think sometimes you just have to keep nagging about how bad you are until some doctors will listen. I was going to my GPs surgery every week and also phoning for advice often. You should not be feeling like this and should not have to deal with this by yourself.
I do hope you feel somewhat better soon if only in your mind for now. Take care
 
Hi Stargirllll,
Hope things start to look up for you! I will be sending any good vibes I can your way! What i've started doing is keeping a list of all the meds i'm taking (the dates I took them), every time I call a Dr. - what they tell me, when my visits are, what happens, etc.. and I take this in a report form with me to my visits now. i'm also frustrated! But when the docs see how much you are keeping record of it seems to help a little anyways.. Oh, and I've been requesting copies of ALL labs now. And I add those in to the ever growing pile of medical info..

Just keep after it.. and hopefully you will find someone to take the time and care to make sure YOU have some releif! Best Wishes
((HUGS))
 
Hiya Star

phone these tomorrow and they are very good, they should let you know where gastro dept is being held in the hospital

http://www.pals.nhs.uk/

then go to it, lie down and scream in agony if you have to, milk it, and someone is bound to come to your aid. Have an accident on their floor if you have to!
A&E is ok, but they hardly ever refer. I know, I've been there done that!
You're in the UK, it's your right to choose a hospital of your choice, no matter where you live, this is a new initiative, and your GP HAS to comply!
here's some links

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx
http://www.sheffield.nhs.uk/choice/

Don't let them walk all over you, phone tomorrow! Be assertive and demand, Good Luck and hang on in there
love lots
Joan xxx
 
Not much to add that the others above haven't already said. I just wanted to pipe in and say good luck and hang in there. I hope you get some relief soon!

-Amy
 
I don't respond to many posts here these days, but your's really got to me.

I understand your pain and frustration but sitting and waiting, relying on other people to 'fix' you is making you into a 'victim' of the disease. By saying 'they are the ones who made me sick' you are giving the medical system all of your power and there is no way you can heal when you are thinking like that.

I'd suggest, rather than complaining, following up and being assertive (not angry). I ALWAYS get any needed appointments when I speak up for myself.

Love and light

Shaz
 
I have no idea how it works in the UK but good luck. Sometimes you gotta whoop some ass to get help. Best wishes!
 
shazamataz said:
I don't respond to many posts here these days, but your's really got to me.

I understand your pain and frustration but sitting and waiting, relying on other people to 'fix' you is making you into a 'victim' of the disease. By saying 'they are the ones who made me sick' you are giving the medical system all of your power and there is no way you can heal when you are thinking like that.

I'd suggest, rather than complaining, following up and being assertive (not angry). I ALWAYS get any needed appointments when I speak up for myself.

Love and light

Shaz
Click to expand...

I do appreciate your post, but they are the ones who made me so sick, they misdiagnosed me three years ago with warning signs which should have made them do more tests. So for 4 years now I have had untreated IBD, which IS why I am so sick now.I am not a doctor and when someone qualified tells you you have xx, sadly you believe them, especially when the meds they give you work (up until last year that is)

And I HAVE been following up, please read my post again. MP, GP, emails, official complaint etc have all been done over the past few weeks, and I am intending to start phone calls next week.

With pre exisiting health problems in addition to the IBD I have little energy for getting dressed etc and excuse me if I feel sometimes I just can't cope, after being in constant pain with my shoulder for a year and now abdominal pains.
 
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Star- when I needed a referral to an eye specialist my gp looked it up on the computer and made me an appointment there and then. Can't your doc do the same for a GI referral?
 
StarGirrrrl said:
I do appreciate your post, but they are the ones who made me so sick, they misdiagnosed me three years ago with warning signs which should have made them do more tests. So for 4 years now I have had untreated IBD, which IS why I am so sick now.I am not a doctor and when someone qualified tells you you have xx, sadly you believe them, especially when the meds they give you work (up until last year that is)

And I HAVE been following up, please read my post again. MP, GP, emails, official complaint etc have all been done over the past few weeks, and I am intending to start phone calls next week.

With pre exisiting health problems in addition to the IBD I have little energy for getting dressed etc and excuse me if I feel sometimes I just can't cope, after being in constant pain with my shoulder for a year and now abdominal pains.
Click to expand...

I'm sorry, I don't think she meant any ill feelings toward you. We all have other things that require our attention and none of us really know each other on here so please try not to take it personally.

Lots of people on here have gone undiagnosed and still are and some do get sicker so I can see why one would blame the doctors for not doing enough tests. And saying to go see another doctor is easier said than done. Sure some areas you can commute for hours or to another country for the best doctor out there but for many of us, our insurance prevents such things. You can't see someone outside of your county and in your county there's only one GI and he's flipping patients like a prostitute on a Friday night because there are just soo many people who need to be seen. That's what my last GI was like but thankfully I moved a few months ago and am now seeing a doctor who's better but I don't think he's the best. Sometimes you just have to accept the "meh" doctor you've been given unless you have the funds and feel like moving, but that's not realistic.

What I might suggest for you on top of constantly calling them would be to get help from others around you be it friends or family to help you with everyday tasks or anything you think someone could help you with (washing dishes, filing papers, doing laundry, etc). That will alleviate some of the pressures you have to deal with and make these phone calls to the GI seem like a less daunting task.
 
Seems like you are in such a bad place with this entire situation, thinking of you and sending some vibes your way.

Don't stop hoping... xx
 
Thanks everyone so much. I am veery happy to report the complaint seems to have worked since I was just called and have an appointment for tomorrow. Had my choice of 7 appointment slots so they can't be so busy.
 
Hurray! So glad to hear that you are being seen at long last!!! Please let us all know how it goes. I will be thinking of you
 
Awesome Star....hope the appt. goes well. Don't leave that office until you've been "heard". Good Luck. Hope it brings some relief soon.
 
Thanks everyone :)

I saw a really nice Dr, but he was a locum so probably won't see him again. Basically I had some blood done and he's ordering a colonoscopy with biopsy and then an MRI (in place of barium follow through which he's not keen on due to my age) if that is clear. Also he is asking my GP to take me off buscopan and take something else instead (not sure what).

The great bit is IBS came up again, rather annoyed, but right at the end of the consult he drops in about Crohn's, and why would I have a second test if the first is normal? lol, at least they are finally being through so I will know one way or another at last. He did mention what I know to be the current thinking, that you can have IBS& IBD, but I don't give that much credit and anyway since day one 4 years ago inflammation has been found in my blood tests, so probably never had IBS anyway. Plus, the WBC scan did find hot spots of inflammation in my digestive system, which is the whole reason I was sent back to gastro!

Apparently the blood will give more of an idea if it's crohn's, something to do with platelets and white blood cells. And he said my CRP (which has been 22-25), IS high, since 8 is the accepted norm. And since the where has been found on the WBC anyway.....

Feel much better now I am properly in the system, I know from the past the hard part is getting in and that once you are you always get an appointment when they want to see you again.
 
Thats such good news, i'm so happy for you! Good luck with your scopes and what not and I really hope they find whats wrong with you, and i'm sure they will.

This is the first step in making you feel better!

xxx
 
It's so good to hear that you are being taken care of and tests are being done. Good luck........I will be thinking about you!

Take care, :)
Dusty
 
Just read your post, sorry to hear your having such a hard time. It really does frustrate me that people don't get the help they need and deserve. Sounds like you are finally getting somewhere, cross fingers they get you sorted asap.

xxx
 
Hiya Star

You're right about being in the system tho, once you're in, you're in!
You'll have your answers soon enough, fingers crossed for you!
xxxx
 
Thought I would post an update. No scope date, follow up appointment or blood results (which I always ask for in writing, saves waiting months for something that is freely available) have come through.

Still on the diet of bread, crisps, biscuits and crackers, attempts to add other foods have not been successful! Did manage frozen potato products a few times but after tonight am not eating them again.

Abdominal pains are killing me, Buscopan not working and codene phosphate 30mg for shoulder is not touching it. Gone from occasional, to frequent, and have not gone away since the weekend. Had an attack of D tonight, not very much, but the cramps were so bad I was crying purely from the agony, never happened so bad. Did not feel well yesterday either, in pain, felt dizzy when lying down, bad nausea, waves of it so nearly went to A&E again, and tonight makes me want to go back, but I don't know. Will see how the next few days go.

I really worry although the CRP has been steady (not got latest reading) as to the state of my insides and what this means for the future. I know the colonoscopy is the best way to assess that.

On top of everything my period is due at the end of the week, lovely! In the past I have always found a D attack while on is really really painful, maybe i'll not eat because if it got any worse than tonight I would pass out!
 
Well I have chased Hospital three times now about my blood results and test date, man they really could not care less about me. The abdominal pains are reaching epic proportions and I am now terrified about the colonoscopy since i've read on here with the pains there is a higher chance of the procedure hurting (i've had flexible sig so know generally what to expect). And not looking forward to the prep (who does I know!) since 3 years ago it knackered me (and that is saying something) and am in a real state these days.

Still on the same diet, I am very grateful to be able to eat after what I went through but I am going to turn into a piece of bread one of these days!

Got to phone GP this week to see if change of tablets has come through, the best time for me to phone is when they are shut so first I forgot and then there hasn't been a good time to call. Buscopan rarely works so good am coming off that but onto what I don't know. I have a sneaking suspicion it's a steroid IBD med which I won't take at this stage (want my condition to show on tests plus they are strong meds which I refuse to take unless I am diagnosed and need to).

Guess things are back to the thread title, so much for once you're in the system you are actually helped!
 
If I were you I would try A and E, they may be able to admit you and get tests done as an inpatient, or upgrade your colonoscopy to 'urgent' (seen within 2 weeks). Can you increase the dosage of codeine to 60mg? And do you take paracetamol at the same time (it enhances the effect).
 
Hi Rebecca :)

My codiene has paracetamol in already so can't take additional, I could speak to my GP about going onto the 60mg but I feel in the past she has not been keen, and neither am I that is a really high dose, I am taking 3-4 (4 being the max wanted by GP) of the 30mg already!

A&E is pretty much the last resort, went once before after being unable to keep food in, and they said some kind of imflammatory process, don't know what, try and drink more. They sent me home after not even they could get me a Gastro appointment (got one after an official complaint over the delay), so knowing I was not being helped they were happy to treat me like that *shrugs* The Nurse could not believe she had to take the cannula out.

I could try and get the test upgraded, but as I said they've had 3 reminders and not at all interested in replying..... they got the latest letter Thursday so maybe I will hear next week. I thought the GI I saw understood I was very ill but not ill enough apparently to be rushed through. Can't see it being done until after Xmas now, barring an emergency dash to the Hospital, which ever comes first!

Will be seeing GP to discuss face to face change in tablets so will see if she can push them as well. Just got to stick it out really I suppose, cannot force them to give me an appointment.

Will email central appointments centre tomorrow to see if there is anything on the books for me (aside from Rheumy followup 14th Feb.... will have to think about contacting my Dr there to put back that one).
 
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I didn't realise you had the codeine + paracetamol tablets, I have codeine on its own so I am allowed 60mg 4 times a day if needed. Have you been in touch with PALS? They might have some advice on speeding it up, or maybe you need to put in another complaint? Can your GP just book you in or refer you herself for a scope? Can you phone the department directly rather than sending letters? I'm afraid I'm running out of ideas!
 
You sure have had a difficult time! I hope you find some answers and get to feeling better soon. Generally speaking, while a flexible sig is done w/out sedation, you'll probably be pretty out of it for the colonoscopy- it may be the best you have felt in a while :)
When I have had bad flares, I've always welcomed the steroids to nudge me back into remission. The puffy face, irritability, and mood swings were a good trade off for the pain. A lot of the meds for severe disease have nasty warnings and/or side effects.... everyone has a different idea of what an acceptable risk is to get the maximum benefit.

Best of luck to you! Have you thought about seeing if there is an IBD support group in your area? Keep us posted!
 
:) Yes there is a local branch of the national charity, they don't meet very often however there is a meeting in a few weeks but as things stand not well enough to go. Do have a penpal request going into the national newsletter next month.

Yes happy I will be out of it for the colonoscopy, in the UK they give relaxing drugs rather than put you to sleep. Glad that will happen but I do have a high drug threshold so will discuss things with the nurse on the day and ask them to give me the max dose. Hoping I will be well relaxed since I know I have to stop shoulder pain relief a few days before, and I have to lay on that side eek!

As I said am happy to take the steroid drugs when I am properly diagnosed, but turned them down in August due to the reasons already stated. Rheumy and GP agreed with me that that was the best choice (now, perhaps they would say different as I have gone really downhill) Anything that will take away the joint pain and improve things in the other area will be warmly welcomed, but only when it is certain I need them!
 
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Hang in there! Thinking of you....

Please keep us updated once you recieve your results and your new meds.
 
Funny how the tactics vary from region to region. I don't want to know what it's like being awake for a colonoscopy but I hope whatever they do give you puts you in the sky with some diamonds. I hope you appreciate that UK themed analogy, I thought it up spur of the moment.

Funny that you're on a pretty much all carb diet right now, but I feel ya. No matter what shape I am in, I never have issued with donuts, biscuits, pastries or crackers. Glad somethings being good to you as it passes through your system. Let us know how things go and I will be sending some magical red haired luck your way.
 
Thankyou all so much (((hugs to all)))

I didn't intend to but ended up from central appointments speaking to my consultants secretary lol. No follow up appointment on system however I am on waiting list for colonoscopy which is about 8 weeks long apparently, so looking at mid to late December. Unless I can get in before the 21st December will be January as from 22nd I am on period and then it's New Years Eve time. Don't ya just love being a girl :)
 
Well I had a call from the locums secretary which has left me very upset. Told not all the bloods were back yet, and no it wasn't a long time even though many patients think so. That is a blatant lie, i've had blood taken loads and it's never longer than 3 weeks which is pushing it even. Surely they should be chasing by now and not just sitting and waiting. Will be sent to GP even though I specifically asked them to be sent to me which has just been ignored.

Also was told "looking at things you should be called for a colonoscopy with the next few months. Maybe she meant January I don't know but I am devastated I was told the wait was currently 8 weeks and I am almost 6/8. So she might have meant a few months from now, not 6 weeks ago. I am just so upset I thought a few more months and things would be looking up but no hope left even of a quick test now. So January it is or even beyond. Wow maybe I will have another birthday (March) I can't celebrate if i'm lucky!!!!!!!!!!!!

Nothing new on last weeks repeat prescription, should have one ready today so if nothing on there will try and get GP Surgery on phone.

I cannot take much more I really can't :( To be frank with you all one of the only things that keeps me going is I want to be diagnosed, to be proved right, and that I thought a few more months and it would be over. They have found the inflammation with the WBC scan so they'll find it again and diagnose, and I don't want to give up but it's harder and harder to push certain thoughts (which I would never act upon but the fact that I have them worries me) away. Online is the only place I can express this, because once I tell a Dr or friend I will be labelled for life and I so don't want that.

On a more positive note I can now eat ham, and am trying cheese soon and giving frozen potato products another go soon!
 
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Geezzz love you just cant seem to catch a break! I'm sooo sorry. It just makes you hate the system so much more. The worst of all is you are suffering and you really need to get this stuff done and no one is willing to help you.

Hang in there, i'm thinking of you.
 
Thanks :)

Forgot to say one of the other things keeping me going is the thought of suing the crap out of them for alot of money, over the misdiagnosis. All this just adds and adds to my case, I can now sue for the misdiagnosis and subsequent neglect! They do not have an adequate defence for either, they can't say all my tests were normal 3 years ago, and they can't say they have fallen over themselves to help me once the misdiagnosis was discovered! And the money would change my life as I have little now.
 
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Thats an awesome motivation though! I'm rooting for you on that one. Oh my, just think how good you will feel if they pay up for screwing you around. It's like getting justice for every sick neglected, misdiagnosed person out there.

You go girl~
 
Hey up,

What you are going through with the hosptial sounds really similar to my experience earlier this year, I know how you feel, the frustration is just unbearable isn't it - and hard to take when you are at your weakest. Keep pushing them, you will get there.

I was admitted into hospital back at the beginning of July, they gave me an endoscopy which showed nothing - waste of time, I new the pain was in my gut, they were then supposed to give me a colonoscopy but this got cancelled. As it was a Friday, and they could not do any tests over the weekend they discharged me and said that a colonoscopy would be arranged as an outpatient appointment, this never materialised and neither did my discharge letter, I practically disappeared off the system.

So, I went back got another appointment for a months time, this time they cancelled it again, so I go another appointment for 2 weeks after that - they didn't send me through any prep and when I phoned up to check, they had 10 people booked in for the same appointment. By this point I was ready to jack it all in, I have never cried on so many rude receptionists!

On top of this I have blood tests go missing and kept recieving letters about appointments I had not made.

I kept going back to my GP (who is now on my christmas card list), who kept chasing the hospital, in the end he sent me back through to A&E with a letter of recommendation. Hallelujah, this time they got me on the emergency appointment list and 3 days later I got my colonoscopy.

As for worrying about having a colonoscopy when you are feeling so sore, if you are anything like me you will be so relieved to be finally having the proceedure that you don't think about the discomfort - I think I smiled most of the way through! (copious amounts of gas and air may have helped!!!).

My story has a happy ending as they go, and I am sure yours will too. Sure enough the colonoscopy found the problem and got me my diagnosis - I hope this is the case for you to. I am now tapering of pred and trying Azathioprine. Compared to 4 months ago I feel amazing. You will get there to. Don't give up on hassling them, try and see if your GP will send you to A&E with a letter like they did for me.

Will keep my fingers crossed for you, let us know how you get on.

C x
 
Hi there, I had the same type of problems as you. Maybe it's a UK thing (lol).

My doctor was convinced i had a gyno problem for months; but i knew it was an IBD - even though i dont get the diahhorea as much as others, mine is more to do with pain/mucus/etc. It started to really anger me that it seemed like they didn't care and were misdiagnosing me; however i learnt theres no point getting angry, it doesn't actually help anything, the stress probably just makes our health worse!

My colonoscopy was meant to be after about 2 months, but i asked my doc to check other hospitals even if they were further. So i got one within two weeks even though i had to travel an hour to get to the hospital. Definately worth a try maybe?

Dont let the IBS/IBD control your life; iknow its easier said than done, for months i felt derpressed mostly because i had not been diagnosed therefore couldn't start any treatment to make me better!! But you really need to try and keep your chin up; you'll be surprised at how fast the time will go by, and remember that there are people who have been in your situation here if you need to talk!

Kels
 
Oh my, I can't imagine having to wait so long for a diagnostic test. That's just crazy! I hope you find a way to get the colonoscopy quicker and get a diagnosis even quicker. Then you can be on your road to recovery. Good luck to you!
 
Thanks guys, I haven't actually told any of my family about this call because we are all so stressed already!

One outcome I am hoping for is an emergency rush to the Hospital to get some help finally, honestly.

I would lay money on being contacted soon and told that the bloods are lost and can I do them again. No way do they take that long and i've been told my first outright lie, just a shame it isn't in writing lol. Also I had assumed they were back and nothing except raised CRP which is normally all they find, maybe this time they will find something else which is a positive.

One thing this wait is doing is slowly taking away my fear that it will hurt alot. Mainly now I just want to have the test and damn how it feels!
 
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Which test? a colonoscopy? If it's possible, ask for general anesthesia, it's just so much better.

I can not believe they lost your blood!
 
Hi Dras, well I haven't been told the blood is lost, but since it's been like 6 weeks since it was taken that is what I think is happened! Was told on the phone the NHS tests do take that long but I know from experience that is false, I have had blood taken dozens of times.
 
Most blood tests are done overnight and even special ones that get sent away only took a week to get back - when I went on to Humira they do a raft of Hep/TB/etc at an external lab.

Given you say stomach pains, then they should be looking from both ends so gastroscopy as well as colonoscopy.

Remember that a short course of pred is a useful diagnostic tool in itself - take pred, get better = IBD/gallbladderetc. Not get better = IBS/whatever/etc. And it wont fix long standing ulceration as they can/should be able to see that in the biopsies.

Whilst you do have to fight your corner the method of approach is also important, doctors are only human after all, and gentle guiding of the conversation with the odd pertinent question thrown in can work wonders, IME.
 
Having read your posts starrrrgirl - i can relate to every word you have said.
I had to battle/argue/fight/refuse to go home from my local hospital 12 years ago until i finally got diagnosed with CD.
And i was a patient who had a previous history of 2 anal fistula,5 abcecess all removed by surgery at the same hospital! 8-10 years before.They said their was 'no reason' why i kept getting all these problems. Huh!!!
Within 5 days of the diagnosis i underwent a right side hemi colectomy - my bowel was perforated in 3 sections - 1 was in hospital for 3 weeks - it then took me months to get back on my feet.
Despite being on drugs 10 years later i faced another resection - that followed 2 years of arguing with every Dr i saw - AGAIN they were wrong.
They just never accepted what i said - one Dr told me to take anti depressants after i finally snapped - he just could not see that i was so angry & fed up with them getting it wrong!!!
Please don't let that happen to you.

E13 boy Serovera AMP,Loperamide(due to short bowel)
 
I am so sad reading everyone's stories, IBD is a serious illness, why don't even the GI's seem to realise this, and take us the patients seriously. :(

Got my scope in 3 weeks so that's good, spoke to receptionist at Surgery today who couldn't see anything about a medication change request in the information she has access to, and as she said those are usually processed straight away. So she gave me an appointment to see GP next week to see if she know's anything.
 
No I can definitely promise you they lost your blood. darn...

You know why doctors don't take us seriously?
It's because they dont have this disease! They've never had to deal with the stuff we go through EVERY SINGLE DAY!

urgh~! Makes me mad!
 
Wow. That sucks. I hope you can get a diagnosis soon. Gees. Yeah, I've been tossed aside a lot and boy did I pay for it--surgery and secondary infections, etc, etc. It all came up so fast for me that I wasn't even aware of how severe my condition was until it was too late. My doctor was very arrogant and that just made things a lot worse. Well, I don't want to scare you but I think its best to be assertive and demand the medical attention you need. They are getting paid the big bucks and nobody should have to "wait" during an urgent medical situation. It comes too close to being an emergency and the whole point of getting in right away, is to prevent a serious complication.

I don't blame you at all for being angry. I'm still angry as heck at what happened to me.

Anyhow, just hang in there and eat things that you know doesn't send you over the edge. I had lots of success with my treatment (currently homeopathic) and it has reduced my disease from severe to mild. I still may need meds soon due to rheumatic-like symptoms but at least I have the added benefit of natural antiinflammatories.

Take care,
Mary
 
e13 boy said:
Having read your posts starrrrgirl - i can relate to every word you have said.
I had to battle/argue/fight/refuse to go home from my local hospital 12 years ago until i finally got diagnosed with CD.
And i was a patient who had a previous history of 2 anal fistula,5 abcecess all removed by surgery at the same hospital! 8-10 years before.They said their was 'no reason' why i kept getting all these problems. Huh!!!
Within 5 days of the diagnosis i underwent a right side hemi colectomy - my bowel was perforated in 3 sections - 1 was in hospital for 3 weeks - it then took me months to get back on my feet.
Despite being on drugs 10 years later i faced another resection - that followed 2 years of arguing with every Dr i saw - AGAIN they were wrong.
They just never accepted what i said - one Dr told me to take anti depressants after i finally snapped - he just could not see that i was so angry & fed up with them getting it wrong!!!
Please don't let that happen to you.

E13 boy Serovera AMP,Loperamide(due to short bowel)
Click to expand...

Oh my gosh!!! And, I thought I had it bad!:blush: How are you doing now? Did you have trouble gaining weight?

-Mary
 
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Hi Mary - if you click on my name and go to one of my first posts -21 years of crohn's -
you can read my full story.
I can 100% understand people being sceptical of what has happened to me.
I am not a salesman & i do not say i have found 'the cure' for every CD patient,but i have had life changing success with Serovera.If my experience saves just one person on this forum from the agony i went through i would be chuffed.
I would NEVER put this on a crohn's forum if it was not true - i was pushed to breaking point by CD as many on here will understand better than any Dr.

e13 boy Serovera AMP Loperamide(due to short bowel)
 

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