Is it chrones or isnt it?!

[gracifer]

Hi.. I'm new to this forum and since August I've had on going problems with my stomach. Basically now the docs are saying I should be tested for chrones... therefore I thought I would ask you guys to whether it sounds like i do, as you all suffer from it.
Basically in August I was diagonsed with Gastritus due to taking too stronger anti-inflamatries for an arm injury at the gym and then i mixed it with other painkillers. Took that for the course, and at the end was still in not so much pain, but still in pain sometimes. Over the course of the summer, i would sometimes get pain after eating etc, however, went to a music festival with friends and it totally disappeared, as soon as i came home it came back.
Anyway, went back to uni and started to suffer from it bad, so went back to the docs who said I hadnt totally got rid of the gastritus (at some points i was on the floor crying with pain..) so I was put on a double dose, only that didnt work and made me feel alot worse, so I came off them, and waited to see the doctor again.So far, I have no abnormalities in my blood tests.
Saw another doctor and he gave me pills for IBS,(i had very mild ibs like symptoms way before this happened) this lasted till after xmas, at this point in time, I was barely eating because I was trying to eat the things they say to eat for IBS and because whenever I ate it hurt. So, i lost ALOT weight. But they didnt really work.
My parents got sick of me feeling ill (i'm 20) and the nhs not really helping me, so we went private. Had endoscopy, barium meal etc, and although some tests come back conflicting (endoscopy showed i had a cup and spill stomach, barium showed i didnt..) it did show i had some gastritus still there and i have a thing called acid reflux! Had a urine test that showed nothing apart from the fact my body was eating itself and i wasnt eating at this point.. Howeever, my blood test showed that i was anemic and had a high esr. He wanted to go ahead with things with a colonoscopy and stuff like that to test for chrones/colitus.
I went a tiny bit crazy as i couldnt believe this could be happening to me, so i chose to ignore it. Instead I went back to uni, within 2 weeks i was barely sleeping due to stomach pain and started vomiting every evening, not being able to eat, apparently a sign of the acid reflux. So I came back home again
At home went to a docs again, i was pretty much out of it from tiredness/not eating. Again I was told my urine was fine and given more pills which seemed to work straight away, and i felt so much better. However went back to her, to see her after another blood test and was told again that i was anemic, had a high esr (40) which meant i was inflamed somewhere. My urine was normal except for the show that my body was eating itself. And she gave me iron pills.
From almost feeling like me again,, suddenly again I was in so much pain with my stomach (it felt real tender..and like it had spider stretching out and creating the pain) and i found out i shouldnt be taking iron when my stomach had gastritus and it really screwed my stomach up. I seem to getting better,

The thing is, though, can your ESR change when you have an inflamed stomach? I have seriously bad stomach ache at times, worse at night, too the point that it wakes me up. I have my appetite and eating, and my acid reflux seems to have died down. My poos, having gone off the iron have gone back to brown with a few black spots in it (this is because im told the iron is still in my system) My stomach still seems to be tender. Could this be chrones?

Also I feel so scared about the diagnosis if it does. I mean I have the impression of having to have a wee bag and being in constant pain throughout my life... or do you get to a point where life is "normal" again.
Im sorry this is so long. I just want to know what people perception who do have chrones is. Thank you.

 

[vickyhunter]

Don' be worried. I was diagnosed with Crohn's aged 7 and I'm now 19. I have had a fair few rough times with it. But I'm 19 now, at uni doing chemistry, have a boyfriend and live a perfectly normal life
I got really down at times with it, but you have to be optimistic, just think, a diagnosis = treatment
Hope you're okay, keep your chin up!
xxxxxxxxxxxxxxxxx

 

[Crohn's 35]

Hi there, :bigwave:welcome to the forum. My you sounded alot like I did in my early diagnosis. But I didnt show enemic. I am surprise you didnt give a stool sample? I know it isnt fun but sometimes it helps. This disease is very tricky, and IBS is a sydrome, IBD is a disease. Diet may or may not be the culprit. You should not be in pain. Can you describe exactly where the pain is which area? Seeing as you are in University that is stressful, I know my daughter has burn out and that is stress. Sounds like your parents are not very supporting, but hopefully they will understand if and when you get a diagnosis. We are not doctors, but we do have alot of your symptoms. You need to see a Gi or another one. It took me a year of tests and hospital visits before the Gi found it. After many ct scans, barium follow throughts, scopes, and finally they did from the mouth to the intestines and found it. It is not in your head, something is wrong, they just have to find it. Don't give up, cause vomiting with us can mean two things, a blockage or abcess. Either one has to be looked at. Hope you get along ok. Let us know how you are doing. ((hugs))

 

[gracifer]

Hi!
I know it sounds stupid but I kinda get hysterical whenever they mention a colonoscopy.. I could cope with the idea of the CT scan etc but not the colonoscopy.. I got really distressed with the endoscopy and just the thought of it actually terrifies me!
Its just generally in my stomach, but low down, and if i press the lower part of my stomach/abdomen it hurts, but more to the right side.
Currently in third year, so am very stressed over everything!! Dont get me wrong my parents are supportive, but dont really want to accept that anything is seriously wrong with me, which is understandable as I am there only child, and up to 6 months ago I was perfectly fine.
Btw what is a blockage? what does that mean? what happens if they find one?
Sorry I must sound so dim... just been doing alot of freaking out recently!
Thank you though!

 

[gracifer]

Also, I'm finding im not weeing alot. Like 3 times a day, and when i do, my right side hurts... whats that all about?! Could it be a chrones symptom?

 

[Crohn's 35]

Hi, dont worry about sounding not educated about the disease, it takes years to get to know your own body and this disease. Some people and I do not and wondered why. My sister is a bleeder but no pain..again wondered. A blockage is something we all avoid. Not everyone gets it but if can be from a narrowing or polyps and strictures and when food tries to pass and gets stuck, the pain is unbearable (for me worse than child birth natural any day) and or could be partial blockage in which liquids may pass but something that wont digest properly gets stuck or constipation problems cause this and pain with violent vomiting in which emergency is needed.

I too have an only child and I do worry when she is in University and a possible IBD could happen but I dont worry of it much now. She is aware of good foods and drinks water, never pop or juice, too much sugar.

You really need to make sure for a few reasons to drink water, one is helps the brain to function better and needed in university. Studies proved drinking a bottle of water before an exam greatly improves concentration. Another is to flush your system like kidneys and liver, because of the meds we are on. If you are not going, (wee lol) you could have a fistula and or other problems. Dont ignore pain and vomiting, it is not normal and you have to look after yourself. Your parents just don't want you to be ill, I get that. If you need anything answered don't hesitate. Lots of information on the forum. Rest !!!! Take care.

 

[Astra]

Hi Gracifer
and welcome fellow Brit

Just a little bit of advice from an old Crohnie, you've got to overcome your fear of a colonoscopy! You are sedated for this and you can even watch it on the big screen, very trippy!
Sharp pain in lower right side? Not passing water too much? Some vomiting?
You really need to get this investigated, left to it's own devices, is asking for problems, ie, blockage, obstruction, narrowing etc.
I've been there, believe me, it's the most horrendous pain ever!
Don't put yourself thro that, overcome your fear and get a referral to a gastro specialist, get the ball rolling, make that appt.
We're here to support you, you're no longer alone with this
lotsa luv
Joan xxx

 

[bushydougie]

Hi Gracifer,
I was petrified about having a colonoscopy. That was my first test I had (I'm still not fully diagnosed but my GI believes I have CD). Having now had a barium meal, ct scan and endoscopy I think that the colonoscopy was the easiest out of all of them. You get knocked out for it and I usually hate medical stuff but I watched it all on the big screen! Even though mine didn't show anything it is usually the best way to get a diagnosis so I would definitely get one if you can.
I hope you get some answers soon to help you
Let us know how you go

 

[gracifer]

Hi!
I was admitted into hospital last week *shudders* because they thought I might have appendicitus (sp?) only after an Ultrasound (came back nebulous) and a CT scan which came back showing some thickness of terminal illieum, so I'm having to go back in for a MRI scan sometime later on, but at least I get out of the colonoscopy. However, the GI doc put me on Entocort (budesonide) and within 6 hours of taking it, i was sick again. When in hospital I only took pills once, and again, within 6 hours I was sick again... so I dont really know why whenever I take tablets i'm ill.
However, it still hurts to pee at times, i'm not going very often because it hurts my right side, does anyone else with crohnes of the terminal illium get this? Other then that my right side SEEMS to be getting better, only at times does it wake me up with achey pain now.
I just want to go back to being me. I feel trapped in the house because I dont really want to leave, and as I said before I'm 20 and feel I should be living my life, I'm just worried about going out and having an attack. this sucks.

 

[KWud]

Hey Gracifer, welcome to the forum. Big hugs to you hunny and hope you get sorted out soon. It's so frustrating when you're in limbo not knowing exactly what you've got. I spent 3 years like this (between the ages of 21 and 24) and at times just felt like I wanted to die and get the suffering over with! My life was very limited. Fortunately when diagnosed and on medication you can lead a relatively normal lifestyle even if you do have to watch what you eat/drink. So there is light at the end of the tunnel, just hang on in there. If it is crohns, the anti inflammatories will not have helped, this happened to me, I took them for years for a stomach ulcer I didn't have which in turn added to my bowel problems. Stress will make you worse too hunny so stay chilled, I know it's easier said than done. Stress was a big factor for me and over the years I've seen first hand how a tiny bit of getting worked up can have a devastating effect on your health!
As for the weeing issue, I'm currently flaring and for the first time it's hurting me to wee too, I think it's the pressure of pushing the wee out, it causes sharp stabbing pulling pains in the illeum. Is that what you're experiencing? Keep you chin up hunny

Paula
x

 

[KWud]

Oh meant to say colonoscopies aren't as bad as you think, I stayed awake for mine and found it fasinating to watch, but I am an avid Holby City fan

Hugs

Paula
x

 

[gracifer]

Hi.
I just wanna ask a question. I got put on that Pred stuff.. and i've been on it now for like 2 days, taking 6 tablets every morning.. last night, the first day I took it, I woke up with really dull painful stomach ache :/ it was awful. And today this evening i got it agaiin. Is this normal? xx

 

[Jennjenn]

I would call your doctor if you are feeling something out of the ordinary and that painful. Something could be wrong and in my opinion it is always better to be safe and let them know and to see what they say.

 

[KWud]

Hey Gracifer, the prednisolone could be irritating the lining of your stomach, make sure you take them when having a meal, don't take them on an empty stomach. Hope this helps and hope you'll be feeling much better on the steroids soon

Paula
x

 

[gracifer]

Hi. Just thought I would update.
Basically, still on the pred, the doctor though that i'm seeing has basically told us/me that she is "out of her comfort zone" with this, so that filled me with alot of confidence. The GI doctor that I got in the hospital has decided to ignore all my phone calls atm.
Basically some questions. I'm still on a high dosage of Pred, my right hand side pain has gone, but the gastritus pain is back (?). My toilet habits are regular, and I have no sign of blood or anything like that.
Last Friday was the best day i've had for the past few months, I actually felt like myself again, only at the weekend, I got the regular stomach ache back again. To the point where I have to a small heater thing on me and it does help. My stomach though is still very gurgly (is that another sign of chrones?) and can be very painful at times. But I'm no longer getting the bloating or anything like that. Its just abdominal pain. Some days I can manage, others, like today, it stays quite painful throughout the day..

Basically the doc wanted me to take the pred with omerazporale (SP?) because of the gastric reflux i apparently have. But, after taking stuff for it and getting worse I decided to say no also because currently we dont know whats happening inside me, and i dont want to mix.. thats how I got into this problem to start with.
Also she's worried about me going away for my 21st with my parents on friday. You can travel whilst on steriods right?
Also, the longer i keep taking these steriods, whats the effect long term? Are they really bad to get off?
My parents want me to go and see another GI specialist, just I am so bored of being given more questions then answers. No one knows for sure, all the tests say its INDICATIVE of Crohnes but not that it actually is. I'm booked in for an MRI scan though, and although I dont want one, I was wondering whether a colonoscopy would be better because they can take biopsies etc.
Im getting so sick of doctors just prescribing me something and not getting any further forward. I was actually feeling better until this doctor gave me iron about a month ago and it screwed me up so bad, and since then, i've been the same since.

I see my friends living there lives, and just feel so left out. There all at uni, and i'm currently at home, with my parents who are stressing out over me being so ill, which doesnt help matters. I know they care, but I just dont want them to need too. I feel like I have chains around me. I know this all sounds so self depricating, but I'm so utterly SICK of all it.

 

[gracifer]

By the way I just wanted to say thanks for everyone who reads and replies. Its so good I can talk too people out there.

 

[ameslouise]

Hi Gracifer - Thanks for the update.

I agree with your parents to find a new GI. You cannot stay on the steroids long term and need to have a plan for long-term treatment. The steroids can be very dangerous as they can cause adrenal failure and osteoporosis if on them for too long.

You are young and it is hard to see your friends out having fun and you are stuck in pain and with so much uncertainty! It's understandable for you to be pissed about that and frustrated. With the right GI and the right treatment plan, you can live a normal life too.

Good luck, I hope you find a doc you can trust that gets you fixed up real soon!

Happy 21st and be careful when traveling. Make sure you stay hydrated!

- Amy

 

[ruby]

Hi gracifer!!!

Just want to let you know you are not alone. I am at university as well. It is def hard to deal with chrons especially with a flare up. I recently had to drop almost all of my classes this semester because the symptoms were so severe. I understand being left out. My friends like to go out and have fun, and if I am even able to go out, i have to be the DD everytime because alcohol only ensures pain and the runs the next day if not that night. I hope that you can get a good treatment plan to help you out. University is a time to enjoy yourself and getting proper treatment will make your experience more enjoyable. Good Luck!!!!!!!!

Michelle