Worried and alone

[Amyj89]

Hi there,

I am so confused and I feel very alone. I have had pain in my right side infrequently for years. It has resulted in two trips to casualty; once on a night out which ended in me being total humiliated by paramedics thinking I was a drunken fool and a doctor giving me morphine without asking and saying 'so besides acting what are you good at?' which had left me too ashamed to ask for help.

The last time I had the pain at its worst, I went to the walk in center and within 10 hours they where taking my appendix out. I thought that it might be the cure but alas here I am! (the pain seems to travel up and down from just below my ribs to my hip)

I have a tendency to ignore the pain as best as I can now because nobody I know seems to believe me/want to know. But now I am scared. For the past few days, there has been blood in my stool and just now I have past what looks like a thumb size lump of flesh! I am freaking out! I am Vegan so there's no chance its meat. I just don't know what to do and I feel so foolish.

Any guidance or similar stories would me much appreciated.

 

[Astra]

Hiya Amy
and welcome

visit your GP and get a referral for a gastroenterologist. Don't be fobbed off by your GP refusing this referral cos it's IBS, you DO NOT bleed with IBS.
Where your pains are, called the lower right quadrant LRQ, may indicate Crohn's. The pain radiates to the ribs, lower back and hip. The gastro will investigate using a colonoscopy or a small bowel scan.
Try not to worry, but make that appt with your GP, only he can refer you. He might also do your bloods too, if there's inflammation in your small intestine, this may show up.
Good luck, don't delay, do it asap
Joan xxx

 

[Amyj89]

Hi Astra,

I hate going to my GP. I feel like I am always there, I have been three times in the past two weeks over tonsillitis that was worsening (its took a month to go!) plus countless other things..I'm 24 and I feel like I'm falling apart!

I have been a few times over this pain and I have been for a few scans on my liver, kidneys, ovaries etc. to no avail. I am truly fed up and am starting to wonder if I am just imagining it. Its no fun at all. I will try this last time and see what happens but I am not expecting much! I was half tempted to pick the sample out but changed my mind.

 

[Agent X20]

Don't worry about seeing the GP too much.. it's his/her job. I nearly took up residence in the GP's waiting room at one point. If you have blood in the stool you really must get it checked out. I'm not putting GPs down (I think mine are excellent, as it happens), but the clue is in the title... GENERAL practitioner... you should be referred to a specialist.

Good luck

 

[lizbeth]

Hi Amy,

I definitely agree with everyone else, go to your GP. You are precious and you need to look after you and if that means constant presence at you GP practice well that's what you should do. I know it can be a slow process to get a diagnosis but keep at it.
Any time you want a vent come back and we will be here for you. Take care, let us know how you get on. :hug:

 

[rollinstone]

Hi Amy, just offering some support, the sooner you go to the doc and get a referral to see a GI the sooner you can be on the road to recovery

 

[Amyj89]

Hey Guys,

So I listened to your advise and went to a rather stern looking GP.
I rather sheepishly explained what had happened the night before and he asked me a whole bunch of questions. He looked stumped and recommended blood work be done.

I asked if there's a chance its Crohn's or something similar and he said that Crohn's ALWAYS has the symptom of urgent diarrhea and 'the blood just gushes out' - is this true?? (which wasn't the case at the time) I was under the impression that Crohn's has different levels of effect on people.

As if on request, I have just had a case of urgent diarrhea with more blood, this is scaring me a lot, I have eaten a very 'sensible' diet today; porridge, a banana, veggi sausage butty, and home made chickpea curry. I feel like giving up and ordering a bloody big mac for all the good my diet seems to be doing!

I am in my final year of uni, my boyfriend has left me and I feel so so alone. I just cant deal with all the stress!! :sign0085: everything seems to happen all at once!

 

[furiousfunker]

oh my, im sorry to hear about everything that is going on and you have definitley come to the right place.

the GP is talking rubbish with 'blood gushing out'.. I have never had that, and even when i was having my worst ever flare up, no gushing blood, it was very minimal.. its rare there's no blood but it can happen.

anyway, now that you have passed blood and urgent diarrhea I think he best start listening to you properly. Demand to see a gastroenterologist, dont be afraid, if he is any good at his job, he will do it and if he doesnt, I personally would go straight to hospital, because you sound in a very bad way.

as for your diet, cut down on fibre as much as your can, that will only make your symptoms worse! Im not sure what a vegan diet usually consists of (sorry for my naivity) but please try and cut down on it

and the stress wont be helping either.. If you boyfriend has left you while you are in this state, he wasnt worth your time anyway, so forget about him (easier said than done, i know) and I never went to uni so I dont know how that works on maybe getting some extensions on your deadlines?


i hope that has helped somewhat, any more questios, dont hesitate to ask!

 

[Amyj89]

Its going to be two weeks before they can fit me in for my bloods, I just don't know what to do. A&E seems extreme and walk-in centers always end in a referral to a waiting list.

vegan diet is everything but animal products. I also tend to stay away from greasy food as it doesn't agree, thank you for the advise about the fibre (I actually thought I needed MORE fibre!) I just feel like if I could take charge of at least one area of my life I'd feel better but I'm turning into a nervous wreck. Luckily I only have a month left on this course and I can stop worrying about one less thing.

Thank you to everyone for your support, I feel relieved when I get an email saying I have a message from someone x

 

[CeeCeeGo]

Hello Amyj89
Just wanted to send you my support and I totally agree with what everyone has said. It is really important that you are seen and for what it is worth I do not think that A&E is extreme. You are feeling poorly at the moment and probably scared, so by going and hopefully getting checked out they can start to treat you and also hopefully give you some reassurance. Crohns is NOT always about raging diarrhoea and bleeding - it seems to have many variations.
Please look after yourself and let us know how you get on. :hug:

 

[Astra]

Hiya Amy

What a tosser, I've never ever bled.
With the best will in the world GPs don't know the ins and outs of specialist areas, that's why it's imperitive you get that referral. I agree about the walk in centres and A&E, don't go.
Phone the GP surgery again, ask for a different doc, get the blood bag, you DO NOT have to wait 2 weeks, that is rubbish.
You can take that blood bag to any clinic or hospital and get it done straight away if they're listed as blood tests within your Primary Care Trust.
Be your own health advocate, insist & persist. Bleeding is a red flag symptom.

Re your diet, check out the low residue diet, here

http://www.hhsc.ca/documents/Patient Education/LowResidueDietFoods-trh.pdf

this will slow down your bowel and rest it.
We're here for you, don't suffer in silence
xxx

 

[furiousfunker]

A&E is definitley not too extreme, if your symptoms get worse or you see some sort of flesh again, I really think you should go!

and I too thought I wasnt getting enough fibre before i was diagnosed, so i was shoveling in as much as i could, not realising i was making myself worse! so dont make that mistake haha

have a look in the diet section of this forum for more adivce

 

[Amyj89]

haha oh my! I will consider going to hospital tomorrow morning and asking for my blood work to be done, I guess there's no harm in asking!

I shall update you when I can and thank you all again very very much

 

[Astra]

I've always mentioned going to A&E in situations that are serious, and yes, yours is, but until you have a firm diagnosis of an IBD, the problem is once you get there and you're seen by a doc, intern, locum, etc, you could be waiting up to 8 hours for a specialist.
If you have a diagnosis then the doc can pull your notes and buzz your gastro/specialist/consultant/surgeon.
This goes for emergency surgery too, via ambulance. I personally wouldn't let a General Surgeon anywhere near my guts, I'd want my Colorectal Surgeon.

 

[Bren52]

Hi Amy. I was only diagnosed with both Crohns and Ulcerative Colitis 2 weeks ago today,the tests took months to complete. I'm not amused at having these but who is! I AM happy that after years of wrong diagnoses that I finally have answers. You need to demand to be sent to a gastro clinic. You end up feeling weary and that no one is listening to you. I hope you get your answers soon x x

 

[Hope345]

Amy,

our daughter bled for several months and never has diarrhea before she was sent to a GI. It does sound like you might have Crohns and have a bad flare going right now. I am sending lots of support and hope you get all the care you need right away.

I agree that you have to be your own advocate. Do you have someone to go with you to the hospital? If not, keep on here and we will be there for you.

write down all your symptoms you have been having, and any questions. Sending my best and keep us informed.

 

[Laura44]

Hi Amy - sorry you are scared and going through all this. Please keep see the dr and get your blood work done - otherwise the stress of worrying isn't going to help matters any. Hang in there! Keep advocating for your own health - insist on getting the help and dr you trust. <3

 

[CeeCeeGo]

Hi Amy
How are things going? Did you manage to get some advice/help?
Take care

 

[Sybil Vane]

I am so sorry that the doctor treated you like that and had the nerve to accuse you of acting. What an asshole! I hope you can see a gastroenterologist soon for a colonoscopy so you can get the diagnosis you need. Your GP is obviously very unknowledgeable about Crohn's disease. I have never gushed blood and have severe Crohn's disease. In fact, I rarely bleed at all and have had three surgeries. It's usually absorbed by the time it hits my colon.

Sending big hugs!!

 

[Jam300]

Hi Amy, how is everything? Did you get seen to in the end?

I've got to agree with everything that Astra has said (the lady knows her stuff). Go back to your GP surgery and demand a referral to a GI, with your recent symptoms this shouldn't be an issue. Despite this, even without diarrhea and blood you still deserve to be seen, i've had CD for around thirteen years now and have been almost symptomless throughout, I still have it. Once you have an official diagnosis, you won't have to bother with a lot of unneeded bureaucracy and mismanagement, both now and in the future.

Please keep us updated, best of luck to you!

 

[Agent X20]

Amy,

our daughter bled for several months and never has diarrhea before she was sent to a GI. It does sound like you might have Crohns and have a bad flare going right now. I am sending lots of support and hope you get all the care you need right away.

I agree that you have to be your own advocate. Do you have someone to go with you to the hospital? If not, keep on here and we will be there for you.

write down all your symptoms you have been having, and any questions. Sending my best and keep us informed.

Two great bits of advice in there:

1) Take someone with you if you can... obviously it would have to be a very close friend or relative. Sometimes they pick up on something you haven't thought about and you won't feel so intimidated

2) Write down as much as you can... symptoms and all the questions you want to ask

 

[Amyj89]

Hey guys so quick update.

The evening after arranging my bloods, The stress of my situation coupled with a bad bleed lead me to ring the NHS direct phone service for advice. A rather sleepy out of hours GP who spoke poor English took my details and then basically said 'well,why are you ringing here if you have blood work booked?wait for that'. AHHH! BECAUSE I'M FREAKING OUT THAT'S WHY YOU STUPID MAN!

Luckily, a good friend of mine came round and comforted me about the various issues i'm facing so I relaxed a bit. However, last night wasn't great. I met with my boyfriend who officially ended it (he said he wanted to marry be in January and then ended it because hes not ready for commitment, serious head fuck) and then as a result I went on a rather silly drinking binge. I woke up this morning, feeling rotten but with bad , achy pains in my side. I went to the toilet twice within 2 hours and there was the blood again. I hadn't eaten very much the day before so I was surprised how much I needed to pass.

I know its a stupid question but I assume alcohol needs to be avoided now? I've had my liver and kidneys checked as part of an on going investigation into what this pain is and have had the all clear so know its not that which is the issue.

I drifted back off to sleep for a few hours but now I've been up for about 4 hours and the pain is steadily getting more uncomfortable. Is it stress? I have quite severe anxiety and I know I can be very emotive so i wonder if its the trigger of my flare ups.

Esh, I wish things where simple, I don't feel strong enough to deal with all this myself. Sorry, Rant over!

 

[CeeCeeGo]

Hi Amy
Have you got a friend or family that could come over? I am sure that your stress is not helping your situation.
Have you taken any pain killers? Probably a good idea to avoid aspirin and ibuprofen as these can aggravate your tummy. If you are taking painkillers and they are not helping then it might be worth thinking about going to A&E. I know Astra rightly said that when you know what you have, it is easier for A&E to help you - but I am just concerned that you have felt bad for a few days now and I want you to get some help. It can be hard to ask for help, especially when you are feeling ill, but I am hopeful that maybe a friend can help you or even go with you, if you decide to go to A&E.
You must do what you feel is comfortable for you.
Take care and let us know how things are going. :hug:

 

[Amyj89]

Hi Ceecee,

I was going to avoid taking anything to be honest. I've just finished a three week course of antibiotics to get rid of tonsilitus and after last night, I felt like my body would appreciate a break!

I don't think I can face A&E. I don't feel strong enough even with support. Its such a horrible,degrading environment. However, if this pain doesn't ease up I might find its my only option.

The Saga continues

 

[CeeCeeGo]

Hi Amy
I am so sorry that you are going through this but please only do what you feel comfortable doing. You are probably right to try and avoid all meds and give your body a rest - but please do not suffer pain.
Have a good rest today and try to chill out and look after yourself.
Take care and lots of hugs

 

[Astra]

Hiya Amy

no wonder you're feeling rough, anti biotics always flare me, they're good, but they strip the gut's good flora too.
You could try some probiotics, yoghurts. Also stick to a low residue diet til you get seen to. No more alcohol, this will hurt. It's ok, in moderation, depending on what you drank. I personally stick to vodka, pure with no crap added. I avoid lager, wine etc (coloured drinks)
Also, you could try codeine (co-codamol) go to Boots, speak to the pharmacist. Dose up, get a heat pad and REST! Stress is a killer, chillax and avoid that boyf!
And on Monday, get to the GP, and don't move from his side til he refers you to a gastro!
I'd also avoid A&E, especially on a Saturday night in Manchester! But if you start vomiting, then phone an ambulance.
Good luck and let us know how you are xxx

 

[Amyj89]

I will be giving the drink a miss because I just end up feeling sad after it anyway! Back to the gym and water! codine is great but I have to work tonight :/

I have just stepped on the scales and I've lost about 5 pound this week. I am a bit overweight so it was good news but I am a little concerned about why I have dropped it because I haven't exactly been trying plus last nights boozy session should have piled more on if anything!

Feeling a bit less upset after walking the dog in the fresh air but the pain is still very much there, I wonder if its possible to get a referral via the walk in center?? Then I wouldn't have to face the same GP!!

 

[rollinstone]

Hey amy sorry you're still feelin crap, defs avoid alcohol, I used to love the Booze very much (I'm 24) so it sucks when all your friends are drinkin but it's worth avoiding it, marijuana on the other hand is great for crohn's and got rid of my symptoms almost immediately, however don't use nicotine to spin it! Bottom line is though the sooner you see a GI the sooner you can get on the mend! Stay strong

 

[Amyj89]

So, its been a rather odd few days. I have had zero appetite which is not like me at all. I managed to eat some fruit at about 8pm at work and this pain is now radiating into my back. Just jumped on the scales again and my weights dropped by another pound since yesterday. The pain is also now much more pronounced
this morning and is preventing me going back to sleep.

I feel completely heartbroken which probably isn't helping matters; constantly crying, panic attacks etc. Still, glad I managed not to drink after I got home last night. My head is is pieces, I ran a red light by mistake and had to do an emergency stop, I have NEVER done that and it totally freaked me out! I don't really have much reason for this post other than I feel very lonely. I have a few friends who have been supportive but I really don't want to keep crying and boring them. I defiantly think anxiety is a trigger for my flare ups.

Couple more months until graduation and I can breath again... I hope! x

 

[furiousfunker]

Hey Amy, I'm sorry things haven't improved yet

Stress and anxiety are definitely known causes for flare ups, so that ass of an ex boyfriend really couldnt have picked a worse time to do what he did.

The fruit may also have contributed to the pain getting worse, avoid the skins and seeds as best as you can.. have a look in the juicing subforum on here about it, it will probably benefit you a lot

And finally, you're never alone on this forum, everyone is friendly and will help you, even if its just a chat to take your mind off things... There is always someone here