New to the forum & to IBD

[sian]

Hello everybody,
I am 23 years old and have been struggling with tummy troubles for over three years now...and within the last 12 months my health and weight has declined very rapidly! I have lost over a stone and a half (unintended)and I eat like a horse...and I'm only a dainty dot anyway (now I weigh just over 7 stone) I have had an abscess on the top of my bum crack and had that removed which then lead to having a racing heart and now im on beta blockers with an unexplained cause and for 3 months I have had very bad diarrhoea to the point were I have even had accidents during the night and extreme stomach pain to go along with it all! Iv been moaning at my doctor every fortnight for the last year and they've just kept passing it off as nothing, so I had a second camera (i don't no technical terms which they looked into my lower bowel and said it was all clear yet 3 years ago they said there was scarring and left it, so I have just had 7 days on prednisolone 5mg 6 a day...I didn't no what these were for I just new they were a steroid that might help stop the pain in my stomach (under my ribs n upper abdomen) anyway to cut the story short they worked...my doctor spent 40 minutes with me yesterday to explain that they are calling my condition IBD but not ulcerative colitis and I now have to go for further tests involving a camera that goes right the way through my large and small bowel to my stomach as they havnt seen that far round yet! I can't quite get my head round it all as I have never even heard of these illnesses and I'm really quite scared and have been very tearful since finding out! I am very interested in finding out everything I can about IBD and I think this forum is going to be my best option. Xxx

 

[Astra]

Hiya Sian
and welcome

Yes this forum will certainly help and support you thro this difficult time. Try not to fret, we're all here for you, you're not alone.
A good rule of thumb is, if the Pred worked then this would indicate inflammation somewhere.
Good luck with the pill cam and keep us posted. Fingers crossed it's not Crohn's but you do need an answer as to what is giving you gip.
Lotsa luv
Joan xxx

 

[AckMac]

Wow it sounds like you've been through a lot. I hope they get things figured out for you soon! You need to be well again! Like Astra above I hope its not Crohns but if it is then you are definitely in the right place. The people here are great I don't know what I'd do without them.

 

[Jim (POPS)]

I know how you feel. I too had problus for a few years before they found that i have crohns. Learn all you call about it. Come to the chatrom, the people there are very helpful. Hope to see ya there.

 

[Stephen]

This sounds awfully like me. I had an anal fissure as well as lingering problems for 3-4 years before everything seemed to crash at once. I feel your pain, man. Just remember, the doctors are there to sell drugs, not to heal you. Always keep alternatives in mind, but at the same time keep your thoughts rational and informed. Regardless of what the doctor tells you, stay diligent in your own research and always consider family history and other factors. That said, a GI definitely does (in most cases) know more about these diseases than any of us, so respect his opinion/diagnosis.

I personally don't believe I have Crohn's nor ulcerative colitis because I have responded very well to antihistamines. Therefore, I believe my condition is rather a mast cell disorder. Namely mastocytic enterocolitis You can read my story here: http://www.crohnsforum.com/showthread.php?t=47701

Keep in mind, however, that very few with IBD-like symptoms have this disorder. I never experienced many of the "typical" signs of Crohn's and colitis as I never had any blood and never experienced an "urging" sensation to be on the toilet. I also experienced much more systemic inflammation symptoms which are not as prevelant in typical IBD.

Whatever the case, always keep an open mind and don't take your doctor's diagnosis as a death sentence or a lifelong battle. Even those with by-the-book Crohn's and colitis will soon be seeing much more effective treatments (such as helminthic therapy) as we learn more about IBD's causes.

God Bless!