Ive baffled my doctors - please help

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bozzylozzy

bozzylozzy

Joined
Oct 4, 2011
Messages
738
Location
Sheffield, UK
ive baffled my doctors - please help

Please help.. im in limbo at the moment and feeling really low

my doctors are stumped as to whats wrong with me.
they are querying crohn's disease. my symptoms are:

Abdominal pain (lower right side) but also have "patchy"pain elsewhere in my abdomen too
diahrroea for years - currently having normal stools on low residue diet
feeling tired and "not with it/confused"
I had inflammation in my blood count which disappeared with IV steroids and antibiotics
i dont have any weight. loss.
my stomach pain has come back
my ultrasound scan was negative and my blood tests are fine too

Please help, has anyone had similar experience?
 
:welcome: to the forum. Yes, I have had a years worth of tests, colonscopies, scans, xrays, small bowel follow throughs, you name it did it, so many times it was a year for full diagnosis. I had it so severe, and how it was missed I will never know. Even when I was flaring many years after diagnosing a ding dong doctor missed it. One thing I do know is being on prednisone while being tested is a waste of time. Getting the biopsy in the perfect spot needs to be done or many biopsies. I know :stinks: and if you are not in Canada or UK chances or no insurance you are going to spend alot of money. Colonoscopies are still (in my opinion) the best way of detecting with biopsies, good luck keep us posted.
 
Thankyou for replying, im in the uk. And hopefully when i speak to my gastro tomorrow he will refer for a colonoscopy. im definitely asking for one! Lol
I guess im just concerned my depression will come back- i think the prednisolone is giving me terrible mood swings now :-(
 
Hi there and welcome :)

I'm sorry you're having trouble. My thoughts:

1. Demand, at the very least, a colonoscopy with biopsies.
2. If they agree to the colonoscopy, have them do an immunohistochemical analysis for mast cell tryptase (MCT) on the biopsies to rule out mastocytic enterocolitis. Most GIs aren't doing this as it's quite new.
3. Ask to have your vitamin B12 levels checked.

Best of luck to you and keep us updated!
 
Hi and welcome! I agree with my friends above, you need a colonoscopy with biopsies. All of my bloods and image tests have come back normal; my inflammation and ulcers have only been seen through colonoscopies. In my opinion, it is the most reliable test, since it will allow your GI to see exactly what is going on in there.

Good luck!
 
If the colonoscopy doesn't show up anything then don't be fobbed off with IBS at that stage. The small bowel would also be needing to be tested as Crohn's can occur from mouth to anus.
 
Thanks for all your advice-ill definitely keep you posted

i was beginning to think i was going mad!
When i was in hospital 3wks ago, when the pain was really bad - my. knees hurt. im almost convinced ive got an IBd
 
Hi it does sound like IBD unfortunately but it's usually a combination of tests then the docs come to a conclusion it can be a slow process. Ultrasound is useless, def request colonoscopy, small bowel series and possibly CT scan. Your doc sounds like he's on the ball though and for them to have already given you steroids they must be pretty convinced it's crohns or the like. Good luck with the tests
 
Pred causes my knees to hurt suddenly and 60 seconds it goes away NO ONE like Pred, it is the "wonder drug" but wonder more about the side effects. Moodiness was my worst!
 
When i was first admitted to hospital they did a ct scan.
they said they could see "something" but was unsure if it was my appendix or IBD.
the steroids and antibiotics stopped pain and inflammation levels. then went home

they got another doc to look at ct scan.. and he said it was my appendix.
Thats when i had ultrasound - which showed my appendix to be normal
Then after 2wks at home, my pain started to return. along with a bout of diarrhoea.
so now im back in hosp :-(

I see my gastro today, so ill let u know how it goes

im definitely lucky - the hospital in my city is one of the leading hospitals for gastro in england
 
Hi Bozzy, I'm just wondering where u are? My surgeon said he was the best in the country. Are you in the Northwest? I hope you get an answer soon. It is a nightmare being fobbed off.

Kaz xxx
 
Im at sheffield hallamshire - its got a gastro investigations unit. so other hosps refer to here
i dont know if my gastro is a top doc - just good hosp for investigations.

I dont think im being fobbed off... yet. The ward doctor said theyre confused about me
and they seem reluctant to do anything further. just hoping they'll do more tests now.. rather than later

im so impatient! Lol!
 
I was in Fazakerley hospital. The consultant and surgeon were great. I had a sigmoidoscopy that showed up IBD initially, then a CT scan showed the extent of the disease. Good luck Bozzy xxx
 
The doctors have just been and want me to have an MRI scan
i asked about a colonoscopy, and they said they will do one - but further down the line.
so fingers crossed that shed some light on the matter :)
 
Good luck, hope it shows something. Maybe having that maybe showing something means no ct scan. More invasive than MRI...I have had so many ct scans I should be glowing by now, so now they tell us not to have them. :yfaint:
 
Hi everyone! Theyve decided against an MRI .. and theyre going to do laporascopic surgery instead to take a look inside and probably remove my appendix at the same time.
they're discussing the options of what to do if they find any crohns - whether they remove the damaged parts or close me up and try drugs instead.

Ill keep u guys posted
 
Your doctors are right to do this! They took out my appendix because it was "microscopically leaking" guess we will never know for sure but after getting them out the pain came back 10, so they were wrong and who wants uneccary surgery?

It is a good idea because they can see right up close and no guess work. I know you wont like this but if it is leaking it could cause emergency surgery or peritonitis. Some others had this happen and it is very dangerous. Good luck, everything will be just fine, you maybe on the road to a better life after.
 
I know no-one likes the sound of surgery but they know what they're at and at least if it's damaged beyond repair they can remove it and talk appropriate treatment after that. I dreaded the thought of a resection and was in denial for ages but I really trusted my consultant and it really was the best decision. I hope you to get the same outcome. Good luck and try not to worry lots of people get great success with surgery.
 
We have had both scenarios in our family.

My daughter went undiagnosed for 18 months and on her last admission to hospital she presented as septic. It was decided to go in and have a look around and while there remove her appendix to rule it out a cause. As it was, when they opened her up her bowel was perforated and infarcted and she ended up with diagnosis and a resection.

My husbands cousin went undiagnosed for 4 years and they eventually decided to open her up and have a look. The doc saw immediately it was Crohn's but since the bowel was intact they closed her up and started her on meds. That was quite a few years ago now and up to this point she has not required any further surgery.

Good luck and I hope it provides you with solid answers!

Dusty. xxx
 
Hi everyone! I had my surgery yesterday and ive got great news
they removed my appendix and said that it looked like it had been inflamed for quite a long time.
they couldnt find any evidence of an IBD. so ive just got to manage my IBS as usual

you have all been fantastic with your advice and support. so a massive thanks from me!
what you guys are doing is brilliant. i was genuinely worried about the prospect of an IBD as im only 23. And you were all so helpful and i really appreciate it :)

Ill probably start a food diary to manage my IBS a bit better, as i hate getting the urgency to go to the toilet xxx
 
That is fab news, so pleased for you. Hope you have a speedy recovery and lots of luck with managing the diet. You sound really upbeat so I'm sure you will feel better very soon. I am a great believer in the power of positive thinking.

Take Care,

Kaz xxx :rosette2:
 
Excellent news!!! I am so happy for you hun. :)

I hope all soon settles and you can start enjoying life again!

Dusty. xxx
 
I was referred to a consultant GI mid July and I saw him in Sept (nhs-uk). Within 4 weeks of seeing him Ive had an endoscopy whicjh came back normal although not heard about biopsy report yet and a colonoscopy yesterday which showed inflammation at caecum, patchy congestion, mucosa, erythema and some granularity. Im due to see him in clinic in 7-10 days for results of biopsies.
Cant believe how quick this has been and hopefully Ill get some answers to the last couple of years of pain, diarrhoea and feeling ill.
Any info much appreciated!
 
Hey Bozzy!

Welcome and it's great news that you got things somewhat resolved so soon! Hope for a speedy recovery and that you're able to keep that IBS under control :)
 
Fantastic news. Now you have to do your part and behave lol. You are always welcome here whether you have IBD or not IBS is a symptomatic condition but not a disease. But too late, you have to stay here right gang!!!!! :banana:
 
Lisajj said:
Jin, does Flagyl agree with you? Im allergic to it, awful stuff :(
Click to expand...

No :/ I wasn't a fan of that AT ALL. And I hear a lot of Crohn's PTs have an odd reaction to it. Or that it's completely irrelevant to their symptoms.
 
hi everyone.. im really confused again.
i was really positive after my appendix was removed.. and now its all going down the pan again :(

i finally finished my prednisolone about 2 weeks before christmas (after tapering off it for 3mths)

and ever since, my diarrheoa has worsened (and so has my urgency to go to the toilet)
i still get stomach pains. but also my knees are killing me.. i did have joint pain when it flared up in august - but im presuming the steroids stopped that.. and now its come back with avengeance!

so now my doctor has referred me for a colonoscopy.
when they did my operation to remove my appendix - it turns out, that it had attached itself to other parts of my bowel (they think i had a grumbling appendix for years) so there was a LOT of scar tissue as a result.
they also said that my bowel looked fine.. apart from the scarring (bearing in mind, i had been on steroids for a month at the point of surgery, and my pain levels were low). but now my symptoms are coming back, along with the bad joint pain

could i still have a mild case of IBD? im just confused as to what they're looking for with the colonoscopy/biopsy.

surely if during the surgery my bowel looked normal, then i dont have an IBD (but my brain wont stop thinking about it)
 
Hello there, I am sorry to hear things are not going well for you again :( I would say they are doing this colonoscopy to check on the scarring and for any indication of IBD. During the surgery your bowel could have looked normal because of the steroids, these work quickly and you had been on them a month which is plenty of time for them to have done their job and calm things down. Now as you are having issues again the colonoscopy will give a clear picture of what is going on and whether you do have IBD. Have you been given a date yet for this?
 
I havent got a date yet.. but could be a while on the NHS. but i have got private care too..so i might claim on that next week. fingers crossed i dont need to wait too long
 
The sore knees - strange. Have you been checked for any types of arthritis? What's interesting is sulfasalazine is used to treat rheumatoid arthritis as well.

Hopefully the scope will tell all and you'll get a firm diagnosis so you can get straightened out once and for all.
 
I used to have verypainful knees when my Crohns flared. I looked like a crab going down the stairs sideways. :lol:
 
My knees ache, well actually all my joints ache, when I get flare-ups. :(
I hope you get an answer quickly. Keep us posted!!
 
As for your knees - do you also have any wierd looking bumps, and/or red-bruised looking marks on your legs? One somewhat common manifestation is erethema nodosum - I would get red painful bumps which turned into bruises, and my knees would KILL ME.....thankfully haven't had theis for a few years now!
 
i dont have any bruises or lumps. just really bad joint pain (which is now in my right arm too)

have been back to my GP today who has referred me for an xray and blood tests to check for inflammation of the joints.
i have my xray tomorrow and blood tests next tuesday, so i should find out results in a couple of weeks
 
just to let you know, my knee pain has subsided with anti inflammatries. yay!
just gotta wait for results of my xray, and the have my dreaded colonoscopy.

theyve also prescribed me omeprezole for my stomach.. but i still cant stop burping haha
 

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