Hello to you all, please could you help!

hello to you all, please could you help!

Hi, my name is Sam and am 40 yrs old. I started to get very severe diarrohea regularly some 2 years ago. At first it contained some fresh blood so went to GP. Stool samples were sent off which came back normal. I continued to have regular violent diarrohea and was admitted to hospital with suspected appendicitis some months later. I then developed very painful ulcer type lumps on my tongue which never seem to go. Biopsies were taken which again came back negative, relief for me as I thought I had mouth cancer! I was reffered to a gastro who took bowel biopsies etc. They said there was some inflammation so put me on asacol and prednisolone 40mg for one week. As soon as I stopped the steriods I got ill again. They then decided it may not be ibd but an infection. Seen another doctor a few months ago who thinks it is likely that I have crohns but wants to do a capsule endoscopy before he makes a confirmed diagnosis. I feel constantly really tired, still have the lumps on my tongue, feeling of something stuck in my throat which makes me vomit, awfull diarrohea which containes undigested food and sometimes blood i'm sure, abdo pain and also seem to get pain behind my eyeballs? I also have dry skin and get hives and craked skin around fingertips.:depressed: Please can someone tell me if they have these symptoms or are they typical symptoms of the disease. I feel so unwell and feel at my wits end, your input would be gratefully received

Sam x

hi & welcome sam.

i'm not surprised all this has got you down some of the symptoms you describe, i would say, are typical of crohns, but then other conditions can manifest in a similar way too, so its hard to say yeah its crohns. only tests & diagnostic procedures will tell you for sure.

the diarrhoea, tiredness, pain, mouth ulcers, & passing blood are familiar with regard to crohns symptoms. not so sure about the hives and cracked skin - altho i wonder if this is a sign of a depletion of something, maybe dehydration due to having the runs, or vit B12 or iron due to poor absorption in the bowel. the 'something in the throat' feeling i have only had when i've been going through an anxiety attack, apparently its common when anxious to have throat muscles tense up & spasm, & makes you think there's something there.. sometimes bad enough to make you vomit. pain behind the eyes - yes, when having a migraine, which i am regularly just now, but not sure if its connected to crohns or not, altho a lot of crohns sufferers do seem to have headaches and migraines.

i dont know if all that is any help - there could be completely different reasons for your symptoms, but thats my experience.

i hope your team get your diagnosis complete as soon as possible, and get you on the right treatment. until then, take it easy!

best wishes.

dingbat.

Hi Sam, welcome to the forum. I echo Dingbats comments... symptoms could be IBD, or any number of a lot of other things. We aren't doctors on here, just folks who have it or know someone who does. since you've got a medical team that is looking into it (pill cam should tell the tale pretty soon), your best bet is to wait to see whether you're going to be a regular on here or not. A diagnosis of IBD is not the end of the world. And I don't think you'll meet a better bunch of people than the folks who hang out here. Hey, you could luck out and they'll tell you its' not IBD, its just IBS. If it is IBD, come back and keep us posted. Then we can really be of help. I think between the regulars on here we've seen/done it all, and are more than willing to share our insights with you, totally free of charge

These symptoms sound typical of crohn's. I would recommend that you opt for a normal colonoscopy so that the physician can take biopsies throughout the procedure. A capsule can not provide that important information.

The ulcers in your mouth are very normal for crohn's. It also makes sense that you felt better when on crohn's and returned to pain when taken off of them.

Be your own advocate and keep going to different doctors until you find the right one!

Well, if the prev. scope of the colon showed inflamation, but the doctors aren't 100% convinced that inflamation is IBD, that it might be just a passing infection, then the pill cam is probably the next best logical test. I wish it were available to me here. My situation is that I've indeterminate inflamation of the colon.. docs KNOW it is a form of IBD... but cant' (even with blood work and biopsies) determine whether it's UC, CC or CD. and the inflamation in my colon was too severe for them to try to gain entry with the scope via the colon to the ileum. Anyway, enuff about me. Figure you MAY have similar situation at play. Inflamation is present, but indeteriminate. Blood work shows inflamation, but not definitive of IBD (in particular). Inflamation present prevents scope getting into the ileum. A variety of your other secondary symptoms could indicate IBD ,but those too are indeterminate (could be other causes, totally unconnected). Pill cam may show scarring, inflamation, fissures, fistulas, you name it.. any of which would either add to the weight of info indicating IBD, or prove it finally. I see nothing in any of your dr's behaviour/treatment that is questionable to date. IBD isn't a killer diagnosis, we all manage to live with it.. but any doctor is going to be cautious in making that diagnosis until sufficient facts indicate it is the 'right' diagnosis. There are other possibilities, some milder than IBD, but some far worse. The fact that they are mentioning the possibilities, but testing further, seems to me a wise and prudent action on their part. If the docs were dismissing it, or ignoring you, or NOT testing, mentioning possibilities, etc., that would be GOOD reason to look for other doc's. Having said that, seeing a 2nd doc for a 2nd opinion OR confirmation/denial of your diagnosis is a good idea, esp IF the treatment your 1st opinion docs put you on don't do any good, OK?
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Just my added (2nd) thoughts on the topic. Hope I haven't confused you any

HI to you all again,
Thanks for your input. I will post my results when I get them. It seems like forever till you see your consultant for a review! but hey this is the NHS we are talking about. Actually my doc is quite on the ball and wants a clear diagnosis once and for all. He thinks that it is quite probable that I have crohns and I feel kind of relieved that hopefully they have found out what the hell is happening to me. When does the disease manifest itself on average? as I said before I am a 40 yr old female and had serious problems for over two years now.
Do you think maybe that my throat probs could be ulcers like on my tongue, is this a common complaint?

Thanks for your kind words

Samx

Yeah Sam, the thing about Crohns is it is not easily diagnosed. I had some of the same symptoms and saw multiple doctors for roughly a year before I got an official diagnosis. Just be patient and take any and all tests you have to, yes they suck, I have been probed and prodded so much I can't see straight but at least I know what I have now and just have to work on getting it taken care of the best way it can be. Good luck to you and yes keep us posted..