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TummyTroubles

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Hello Everyone

I have yet to be diagnosed with anything. My family doctor has told me she thinks I do have Chrohns. She perscribed me a dose of steroids which did help for a short period of time, but now Im having troubles again. I have a history with autoimmune starting when I was fifteen after a bout with strep throat caused me to be sick for a year. I seemed to be fine after that. I started having issues with my stomach at about 19. I also have had horrible infections from dental work I have had done, which seems to be autoimmune related.
Im 24 now and I usually go about 6 times a day (sometimes more, occasionally less). I have a lot of sharp pain in my lower abdomen, there is pus and occasionally blood. I am going to see a GI specialist this month. In reading about the disease, I have found that people often get a lot of sores in their mouth during a flare up. I get that a lot- Im wondering if anyone else does. Can anyone tell me the best method for getting a diagnosis and treatment. Obviously I would rather not have this problem, but if I could get some relief I would be so grateful. Has anyone had pieces of their intestinal lining come out during a flare up? I know this may seem graphic, but Im really desperate for any help or advice??
Thanks for reading this...
 
hey TT, welcome to the forums

and a possible unfortunate welcome to chrons. (look above benson, i've never seen it spelled with two H's before;) (TT, thats an inhouse joke, stick around and you'll be making them yourself before to long:D)

OK, even with the best doctors, diagnosis of Chrons can sometimes take a long time. there are some very similar diseases (ulcerative colitus) that will all pop their names up as you go through the process.

another problem is that its one of those fun diseases where everyone is just that little bit different.

I've never had the mouth sores, i went down the 10-20 toilets a day, throwing up after every meal, losing 20 kilo's, pooping blood and agonising stomach pains path to get to my diagnosis..... eeeeeek.

everyone also has different reactions to food, but one we find is naughty to most of us is high fibre. fruits and vedgies can also cause much discomfort. if these things seem to be annoying you, try getting your vitamins etc from health shakes and tablets. stick to low fibre as well.

relief will hopefully come when the docs get in gear and get you on some meds. that can also be a very tricky path finding the right ones for you.

(must do some work now, will be back later to continue)

welcome.
Jed
:)
 
Thanks

Hey thanks Jed
I appreciate u getting back to me. Im sorry to hear of all u went through. How long were u feeling bad before u were diagnosed? I have had some bleeding when it gets bad. I do vomit more than most as well. Especially if I try to work out. I get such bad pain in my stomach I cant move. Ive been on the "IBS" diet for about a year now and symptoms are only getting worse. I have lost weight here and there, but mostly I just eat and it doesnt stay in. Im anemic about half the time as well. Anyway, Im just very frustrated. I hope the doctors can figure something out.
 
i went through about 6 months of light problems, which were followed up by 4 or 5 months of hell followed by surgery. large intestine went bye bye. no bag yet, so that was a good thing, but if it comes to that then i know it'll be for the best. crappy, but i'd rather be healthier:)

at the moment, you may wanna put a lil more effort into sleeping and relaxing rather than working out. your body is probably crying out for some rest, let it have some.

(now its back to work again, busy :( (sorry))
 
TummyTroubles said:
I have lost weight here and there, but mostly I just eat and it doesnt stay in. Im anemic about half the time as well. .
Click to expand...

with the weight loss and anemia, your body is probably missing out on a lot of goodness coming from your foods, definately try the health drinks. (those powder drinks you put in milk (if you can tolerate milk:D))

oh and

I know this may seem graphic, but Im really desperate for any help or advice??
Click to expand...
do not be afraid to post anything graphic here:D have a read through the threads around here, nothing is taboo (excpept maybe spelling chrons wrong;))

alot of very useful posts are found in the YOUR STORY section, thats where a lot of the member post heaps of helpfull information for new members.

most of the time you wont find me very helpful, i usually hijack threads... oopsie:)
 
Hi TT
Regarding the mouth ulcers, quite a few of us are prone to them. I get them.
Like Jed said, there are a huge range of symptoms and most of us a bit of a Pick'n'mix (not that I'd choose to pick any of them).
 
hi there TT - glad to have you with us :)

i can only agree with what Jed has already said, in that you may need food supplements right now to avoid the debilitation that Crohns brings... and yep i agree on the rest/relax thing too - absolutely.

its great that you don't have long to wait to see your GI - hopefully you will get some answers, and some real direction regarding treatment.

i just wondered one thing.. you mention you're on an IBS diet... what is that exactly? i ask, because one theory is that IBS needs high fiber - but if a person suffering with Crohns Disease went on a high fiber diet, it would almost certainly make their symptoms and pain worse.
 
Thanks for all your advice. I know I should rest, and I try, but I have always been very active. I live in the Eastern Sierras (California)- and moved here in order to climb,hike, and snowboard. Their isnt much else to do here but that:( Its the hardest thing for me to avoid my friends that want to go climbing, because this past year or two I just cant put myself in that vulnerable position. I have been resting though, as I really dont have much choice. I seem to be more and more bummed the less I can do. Im sure this is all old hat for u all so I appreciate u taking the time to read this.

As far as the IBS diet, I did learn the hard way on that. I was eating more fiber in the beginning and having huge issues. After doing more research, I cut out as much as I could. I have heard of some people taking liquid vitamins as they are easier to digest. Do any of u take them and have any suggestions? I love eating as healthy as possible, but I know a lot of the veggies I am eating can cause issues too. The IBS diet that I try to stick to as much as possible is no red meat, no multi grain stuff, no dairy, wheat, etc.

I cannot tolerate milk. I drink soy and rice milk. If I drink too much soy I have issues too. My boyfriend has protein supplements, but they all have milk in them too. Any ideas?

Thank u all soooooo much for getting back to me. Its nice to feel like Im understood:)
Its so hard to talk to my boyfriend about it even though he is very understanding. U know, its just not that much of a turn on telling a guy about your poo!!
 
Hi Pen

I am a female. I did have a colonoscopy about 4 years ago in which nothing was found. My symptoms have increased 10 fold since then though. I dont see how they wouldnt find something this time. It seems that I have mucous all the time. When I go more, I have more mucous. My pain is in my lower abdomen on my right and left side. Underneath my belly button, its centralized to that area, but can be on both sides. I am not on any medication. I have tried a few. I did just get put on short term prednizone, which helped for a few days and thats it.
How long did u have these issues before u were diagnosed?
Thanks!
 
Usa

Hey Pen,

Interesting that u had pain in the same area as me. Im glad that u mentioned the endoscopy. I am seeing a general surgeon on Monday who wants to do the endoscopy. My insurance is weird, so I have to get my tests done with a gen surgeon and then follow up with the GI doctor. I live in the US, California. How horrible that u lost so much weight so fast. I cant seem to starve myself for any reason, I just prepare for the aftermath :eek2:

Your info has been really helpful, thank u sooo much. Where are u located?

To anyone: I just finished my dose of prednizone. I was completely not myself on them. Depressed and having mood swings which is NOT like me at all. Im usually the most chill person in the room. I read about the side effects and it says that it is rare, but those can be side effects. Has anyone else experienced this? Ugh- I cant have that all the time...
 
TummyTroubles when I am really sick I have to drink Ensure or Boost. They are a liquid supplement that has a ton of vitamins and nutrients in them. They are lactose free. At my worst my doc had me drink 3 of them a day. Really helped me give my intestines a rest and helped me to gain weight.
 
Thanks

Ill give the ensure a try. I might feel a little more energy that way I guess.
good to know Im not the only one going crazy on prednizone. geeeze!! It made me gain weight in a week- not too happy about that either. I guess its just trial and error. Hopefully not too much error.
 
So I am getting an endoscopy and a colonoscopy on Thursday. Im glad they are really checking into this, but still not psyched over the prep. I just hope they figure something out. I dont see how they wouldnt find something at this point. Im trying to stay positive.
 

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