Introducing myself

:sign0144:

Hello everyone

I'm a newbie on here, in fact a newbie to forums altogether! At my age too, technophobe or what?! :rof:
I was dx'd (is that the right term?) with crohns in 1995 aged 24 but suffered for 3 years prior to that undiagnosed. I was first told my symptoms were pschosematic, that I had a weight problem (I wasn't even overweight) and I was getting abdominal pain because deep down (according to the GP) I was feeling guilty about eating!!! What?!!! :ybatty: The next GP I saw treated me for a stomach ulcer I didn't have, and as a result the medication I was on at the time will have made the crohns worse! I ended up collapsing and being admitted to hospital before it was confirmed crohns. Thankfully I have a good GP now who is on the ball :thumleft
I have spent the last 18 years having the odd flare up which responded very well to short courses of steroids. So in general, since being diagnosed and put on medication to control it, I consider myself lucky not to have suffered too greatly. Reading some of the stories on here breaks my heart!!!
About 4 weeks ago I started with the usual flare up symptoms, abdominal pain (particularly around the illeum), toilet troubles, nausea, dizziness. My GP started me on budesonide (entocort) which I took for 2 weeks and they did nothing to help. I have now been on prednisolone for the last 2 weeks (30mg) and I'm still no better. I am now also getting low back pain and right hip pain. I feel totally drained and just want to lie down all the time. The abdominal pain is there constantly and any sudden movement (cough, sneeze etc) intensifies the pain. It's a burning, pulling, sharp stabbing pain. I feel nauseous before I eat and worse about half an hour after I've eaten. I also feel quite faint after eating too and faint when I'm up and about (Does anyone else get faintness when their crohns flares up?). I've had an ultrasound scan which reads normal although the doctor who did this said she wouldn't be able to tell if there were any strictures using this method. Bloods are reading normal at present too! I go back to my GP on Monday. I have two small children (6 & 7 years old) and a husband who works away during the week and therefore don't have the luxury to just chill and get better. Fortunately I work part-time from home for my husband so that can wait! :lol2: I do sing in a band too but that's had to go on hold for now :mad2:
I'm hoping my GP is going to give me a miracle pill on Monday, but I won't hold my breathe!!!:yfrown:
I also take 800mg of mesalazine (asacol) daily, this is my regular everyday crohn's medication.
Thanks for listening to me and well wishes to everyone.

Paula
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Hi Paula
and welcome fellow Brit

I only popped on for a min, glad I did, I saw you were alone out there, all the others will be asleep!
Keep your eye on your temp Paula, this and vomiting could be a sign of a blockage, the pains you describe, hip and back pain were my first indication that something was wrong, then the projectile vomiting came without warning. I was blocked, but cos I waited too long to go to A&E, I became infected. I was also extremely faint too.
Maybe your doc could up the dose of Pred to about 50 or 60mg to blitz this current inflammation for a few weeks? 30mg might be too low?
Mention all these symptoms to your GP on Monday.
hope you're ok, let us know, take care
lotsa luv
Joan xxx

Welcome Paula! After reading you post, I discovered that we are probably the same age. Like you, I had a time trying to get a correct diagnosis. After several years of not finding anything, I was told that my pain was all in my head. One doctor even said, "I think you are spoiled. I'm sure you were over protected and spoiled by your parents." Oh goodness!

You are in the right spot as there are so many of us that have experienced similar problems before being diagnosed. There are those that are still waiting for a diagnosis. You are among friends, so feel free to post and ask questions.

Hey Paula, welcome xxxx

Welcome Paula!...you will find lots of friendly people and good information as you browse through the forums.....hope your doc gets you straightened out quickly!

Hi Paula! Welcome to the forum.

So glad your doc now seems to have a good handle on your Crohn's. You could be feeling more faint during flare ups because when our intestines are inflamed, we aren't absorbing all the proper nutrients that we normally would get from our food when we are doing alright. All sorts of vitamin deficiencies can leave you feel weak and without energy as well as feeling faint. I had such a hard time with energy before my diagnosis, but I also found out later that I was iron anemic. That probably didn't help! Haha.

If you doc doesn't mention anymore imaging tests, you could suggest either an MRI or a CT scan, specifically for enterography (which looks at the small intestine). Either of those should be able to spot any sort of strictures or abscesses if you have either.

I agree with Joan about keeping careful watch over your temperature and if the pains worsen before then. Getting blocked is no fun!

Anyway, I am glad you found us here and I hope your doc has a good plan for you on Monday. Keep us updated!

Hi Paula - Welcome to the forum! It is hard to be going thru all this as a parent of small kids, and with your husband away all week too!

Have you had some bloodwork done recently, specifically iron and b12? These could explain your fatigue and lightheadedness.

Good luck with your appt Monday - let us know how it goes!

- Amy

Welcome, Paula! I am sorry to hear this current flare is giving you such trouble! My blood work always come back normal, too, though there is in fact inflammation. So, I agree with Marisa that you should perhaps have a CT scan to see exactly what you're dealing with. I have found that is the most accurate imaging test. I wish you luck on Monday - Please keep us posted!

Hello welcome

Hopefully monday they will be able to help you more. Like Amy said with the iron and B12 to get that checked out. I have a major problem with the iron right now. My iron shows anemic and my ferritin levels (iron storage) are once again almost depleted. I get extremely exhausted, weak, and dizzy...I have many other symptoms also but those are just a few related to the iron and B12. I go for iron infusions and need another 6 to 10 to get me to a level I need to be at. I also just got another B12 shot. I would definetely have them check on that.

As for the nausea and other symptoms like others have mentioned a few ordered tests and a change in meds are most likely necessary.

Good luck with everything...I hope you feel well soon.

Thank you so much for the warm welcome and fantastic support. It really does help to know I'm not alone
Had about 2 hours sleep last, I was in a lot of discomfort and I think getting myself upset didn't help, boo hoo. I feel a bit more positive today, especially after getting so many lovely replies
I'm going to write everything down prior to my GP visit tomorrow so I don't miss anything and I'm going to insist on an MRI or CT. I'll be in touch tomorrow to let you know how I get on. Thank you so much again. Wising you all good health.

Paula
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Hi Paula,

Welcome to the forum, plenty of valuable info here.

Alex

Hi Paula! I'm so glad you found the forum, there are loads of lovely people on here who are very supportive. :hug:

I am very sad to hear you are suffering a flare at the moment, I really hope you are managing and will be feeling better as soon as possible.

Your old GP sounds similar to the treatment I have had. I've been ill for 10 years and have been diagnosed with "Anorexia Nervosa." A lot of people with IBD I think get misdiagnosed and labeled. It totally stinks. But I am so pleased you now have a supportive GP who is clearly behind you.

You take care chick
:ghug:
xxx

Hi Paula!

I'm pleased to hear the responses you've had here on the forum have helped to make you feel more positive, that's the aim! I can empathise with the Pred situation; nasty drug that it is, it used to knock my flares on the head within days, but I'm currently trying to get a flare under control with an immunosuppressant, a biologic AND 40mg of Pred, and I'm not there yet. It's beyond frustrating! It sounds like you haven't tried all of these yet though so hopefully there is something your doctor can try that will help you out. Keep us posted!

Hi there

Went to the GP today, he is referring me back to the Gastroenterologist. Unfortunately because I haven't seen this Specialist for some years now (about 6 years) I have been taken off the "books" which means a wait on the NHS of approx. 3 months! I have decided to pay private in order to see him within the next week or two and he will then put me back on the NHS "books". My GP ordered a CT scan for this week but the radiologist has just refused to do this, saying it would be a waste of time as my bloods are "normal" so nothing would show on this type of scan.

So, I now have to wait to see the Gastroenterologist and he'll decide whether I should have a barium enema or barium meal to get an accurate reading of whats going on. I'm dreading it but need to get to the bottom (pardon the pun) of this!

In the meantime I've been prescribed more of the dreaded prednisolone Oh joy!!!

Fingers crossed I get to see the Gastroenterologist this week.

Well wishes to you all

Paula
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Hi Paula!

Sorry to hear about what you are going through. I hope that your GI has you on the path to health soon.

I’m also sorry you are on the dreaded Pred, but I hope it helps. Have you thought about trying Remicade? It works wonders for many of us!

Hi Paula,

Sorry to hear you've had to pay out but 3 months is way too long so it's a good call, I'm glad you'll be seeing your GI soon Pred is rubbish, I know, but it usually works wonders too so I hope it gives you the releif from your symptoms, makes the negative side effects easier to take!

Thank you Ian, anyway enough about me, how are you feeling now?

Paula
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does anyone else get faintness when their crohns flares up?

YES! When I'm having a Crohn's flare up and I have to go out for some reason, I feel like I'm floating and could collapse at any second from the dizziness.
I also get numbness of my legs/feet when I'm having sharp stomach cramps. does anyone else get this?

I feel for you with your children, my mum has ulcerative colitis and my best friends mum has crohn's disease and I can see that they put on a "front" even when they feel terrible, so make sure you get some time to get better if you can

Also, i was on mezallazine for 6 years until I finally went on azathioprine. I got told by a doctor that mezallazine is basically strong paracetamol! :/ that was pentasa though. my mum is on asacol but she is also on azathioprine to treat her UC.

hope you feel better soon
xxxxxxx

Thanks Vicky
At the moment I feel like I'm going to keel over at any time with this dizziness, it's a bit scary really especially when taking the kids to school, fortunately it's not too far to go and I'm just taking it very easy. When I mentioned the dizziness to the doctor he looked at me as if I had two heads mind you. He says he's probably the steriods doing that but I had it before he put me on the steriods!!! I'm not knocking him though he is a great doctor, I have a lot of respect for him
I don't get numbness though, that's pretty scary!
I was put on azathioprine when I was initially diagnosed but asked to be weaned off it several years later, I was worried about complications with the liver/kidneys and I wanted to start a family too so was put on mesalazine and I've been great (all but the odd day or two of flare) for the last 6 years plus. Maybe it's just progressed a bit now, dunno.
I got a phone call today to say I would be getting my private appt in the post with the Gastro Guy imminently, yayy. So I'm feeling more positive I'm also chilling out when the kids are at school and to hell with the housework!!! Hahaha
Hope you and your family stay well

Paula
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I get the dizziness as well when I flare up. I'm still undiagnosed, and one of the few "positive" test results that I've had is that my sodium levels are low. Because of that, I've found that when I get the dizzies, eating something salty seems to really help - and if I can't stomach actual food, a teaspoon or two of soy sauce does the trick (it's very high in sodium). Give it a try and see if it helps you any.

Good luck at the GI - I hope he can get you some relief and get your flare under control!

Thank you Cat-a-Tonic, I'll try that

Paula
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Hi Paula

When I had my first episode I had a lot of dizziness and nausea. None of the doctors could explain the dizziness, not in relation to the IBD anyway, but maybe it could be as simple as a sugar level in-balance with eating habits being irregular

As for the nausea I have found 2 possible causes, a reaction to the pain and the possibility of some constipation even though, as you will know, we are usually going far too much! I gather some can get stuck at the bend of the sigmoid toward the rectum. I can get intense pain in that region and neither the specialist of GP seem to be able to explain it

Thanks Jet. I had a bad episode of dizziness and feeling nauseous (but not actually being sick) today and it was after I'd very painfully been to the loo (I hadn't been for 48hrs and was starting to worry about that). So the pain is likely to be a big factor. I had to lie down for a couple of hours after going to the loo today, phew!

Paula
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KWud said:

Thanks Jet. I had a bad episode of dizziness and feeling nauseous (but not actually being sick) today and it was after I'd very painfully been to the loo (I hadn't been for 48hrs and was starting to worry about that). So the pain is likely to be a big factor. I had to lie down for a couple of hours after going to the loo today, phew!

Paula
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Click to expand...

Oh, I know what that is like!
Has your GP offered you movicol? It's very gentle. I don't use it often as mostly I go but then sometimes it completely goes the other way and I then I take a couple of movicol sachets in a day which seem to help.

I have never vomitted with the nausea, but then I think I have a big aversion to throwing up. I've had seasickness and still never managed to be sick !

Jet x

Haha Jet, you're like me, I'd rather be in agony than throw up, it scares me, I always think I'm gonna choke!
I normally go to the loo no problems but if I keep having a struggle with that I'll see the GP about getting something to help.
Thanks for your support hunny.

Paula
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Hi Paula, I posted a thread that mentions my fear of throwing-up. I hate that it can come with the Crohn's Disease. It's nasty and I hate it. I'm trying to view it differently now, just in case I feel so sick and it's the only way for me to feel better.

Embarrassing and Disgusting the name of my thread.

Hi Paula,
Welcome to the forum! Re. the dizziness thing: I have had massive problems with dizziness ever since I started getting symptoms 7 months ago (I am flaring atm). I have even fainted from it twice, and there have been several other close calls. My blood test results were always normal too, except for the last one which showed my potassium to be low (as a result of the prednisolone I've been on). My GP gave me these potassium supps to take for 7 days, and I must say I have felt a lot less dizzy after taking those. Perhaps your bloods are normal, but your potassium could be at the low end of the scale. I reckon that was what was happening with me. The threshold for a potassium deficiency could be say 3.8 and yours could be 3.9. It's still low but it's not low enough for it to register on the doctor's computer as a deficiency.
That said, I have no idea why I'm feeling less dizzy - it could have nothing to do with the supps.Thought it was worth a mention.

Hope you feel better soon. Doctors suck.

Oh and (sorry I just read your other post), that radiologist is a twat! All my bloods have been completely normal and my CT scan showed thickening in my terminal ileum. If I hadn't have had this CT as evidence that something was up no doctor would have taken me seriously and I never would have been diagnosed. Is there another pathology you could have the CT done at? Don't let them mess you around!

Hello again Andi, we seem to have a lot in common Vomitting sucks!!! I'll have a look at your thread hunny, thank you

Hi there Anna - thanks for the info, it really helps to know that dizziness is a common theme and it's not just that I'm blonde, hahaha. I too have gone out cold when having a little espisode, I usually go into cold sweat, throw up, s**t myself and faint at the same time, how delightful ehh?! This happens if I've eaten something I shouldn't have and it's aggrivated the crohns. Once I've expelled everything and had I sleep I feel much better.
The dizziness with this flare up though is a constant thing so probably due to the pain or like you say a deficiency. I will push the Specialist for answers when I get my appt, I'm watching the postbox!!!

Stay well girls

Paula
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An update

I've just had a phone call to say I've got an appt to see the Gastroenterologist via the private route in 2 days time (friday). I'm very happy

It's pretty bad though that I would have had 3 months wait on the NHS. I've only had days to wait for a private appt and will be £160 down, eek!!! It'll be worth it though to feel well again

Paula
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I'm feeling a bit better thanks, but to be fair I wasn't feeling all that bad in the first place - I'm not very symptomatic this time, but a flexi-sig showed that I was very inflamed I think the amount of blood and mucus (only real symptom) I'm passing has decreased, but it's still happening and I'm on maximum drug therapy so even though I feel quite well I'm not sure what's going to happen - may have to have surgery as they're not just going to let me keep inflamed, bleeding bowel inside me forever, even if it's not making me feel sick. Like you my appointment is Fri so should have some answers soon

Glad to hear you got an appointment so quickly (even though you had to pay for it!), hopefully you'll be on the mend before you know it! And I agree with Anna, that radiologist deserves a f*****g slap!

Oh thanks Ian. I'm glad to hear you're feeling well even though something is just not quite right. Hopefully we'll both get answers on friday

Radiologists eh?! To be honest since deleveloping crohns they've been the only people in the medical proffession to get arsey with me. Having a barium meal was an awful experience years ago, they confirmed I had crohns from that test but it was hellish! I was feeling like I could throw up any minute and had to swallow what seemed like a pint of sick so as you can imagine I was struggling somewhat and the radiologer got really nasty with me telling me to "hurry up" and "if you don't drink that in the next 5 minutes I'm sending you away and we'll have to go through all this again, you're wasting my time!!!" I bet it's the same guy who's working there now! Grrrrrrrr I'm much older now and will not take that s**t, he'll get as much back if I see him again!!

Paula
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Just an update

I went to see the Gastroenterologist today. He was brilliant very informative and very thorough I've got to have an MRI Scan and an Endoscopy (to check if the acid reflux problems are linked). Best case scenario is a crohns flare up which he will endeavour to control with medication, worst case senario is that it's a stricture and scar tissue causing the problems and he would be looking at surgery to correct that. I'm pretty calm about the whole thing surprisingly and not being my usual melodramatic self At least I got answers today and a way forward. In the meantime my prednisolone needs increased to 40g daily, bugger ehh!!??

Well wishes to all.

Paula
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"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around"

Well done remaining calm Paula

about 7 years ago I had surgery ( fundoplication) to repair a hiatus hernia I had since my late teens. The reason I had waited so long was because of the scale of the surgery when I was first diagnosed but they can now repair them with keyhole surgery.
Does the same apply for your condition ?
Keyhole surgery is a wonderful advancement

Hey Jet, I don't really know much about surgery, haven't had any on my bowel before, so not sure whether anything can be done via keyhole but I will look into it if surgery is required. I'm hoping it won't come to that and a cocktail of drugs will do the trick instead I'll know more when I get the tests done. In the meantime I'll keep my rose tinted glasses on

Hope you're feeling well Jet?! You must have suffered all those years with that hiatus hernia, god love you. Surgery is scary though. I can understand why you waited.

Paula
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I'm not great, what with having to field the work stuff, but I shall work very hard on enjoying myself for the weekend :thumright: I hope you, and everyone else here, enjoy it too

The surgery wasn't nice but, as usual, it's the recovery that is hard work and keyhole makes a big difference to that. I hope it will be a simple solution for you but I'm sure there will be a lot of support here if you do need surgery :ghug:

Hey Paula!

I just wanted to pop in and say I hope you get some answers with the GI doc! I agree with Anna about that radiologist. My blood levels are usually normal as well and my CTs always show thickening/partial obstructions. I am tired and dizzy a lot but mine is due to anemia and B12 levels. I am assuming this was included in your bloodwork? Sometimes when I am having bad stomach pains I get cold sweats, nausea, and dizziness as well. Just don't let any of the docs make you feel like it isn't a big deal or isn't that serious. Sometimes all those tests don't even show what's really going on! Hope you get to feeling better soon

Beth

Thanks Beth Saw the GI today, he was great and very supportive, I'm lucky! I have to have an MRI Scan and an Endoscopy (because of acid reflux problems which could be llinked) and once we get the results of those he'll decide what he's going to do. He didn't beat about the bush and informed me that if I have a stricture with scarring he would be looking at surgery to improve that. So I'll just have to have the tests and see. I'm ok though, still feel ill, steroids have been increased today to 40mg daily, then I have to taper off 5mg weekly after 1 week of 40mg. I need to take calcium too. Feeling positive because I have a way forward Hoping you feel well Beth. Noticed your album pics today, they are lovely photos

Hugs

Paula
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That's great! He sounds like a great doctor. I know most doctors try to avoid surgery at all costs, but sometimes that is the only option. I battled the strictures/scarring for 2 years before I was forced into surgery after a perf. I know the docs were just trying to keep me from having surgery but no meds were working and I was miserable! So far I am glad it happened. Hopefully yours will be a quicker/easier fix than surgery though bc I know there's a 50/50 chance it will come back! Yikes!

Anyways sounds like you are in good spirits and I hope you have a nice weekend!

Beth

Thanks Beth, it's lovely to get your support. You have a great weekend too hunny and stay well

Paula
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Hi Paula - Good luck with the MRI and Endoscopy. And I hope that stricture doesn't need surgery. But if it does, hopefully it will just be in and out and they don't have to take too much out!

Nice to see you posting so much around the forum! We have so many great new members on here lately!

- Amy

Thanks Amy I'm staying positive, you guys have certainly inspired me to be upbeat and I'm so grateful Hoping you are feeling well and having a lovely weekend

Hugs

Paula
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