It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Digestive Disorders Message Board

Diagnosis at last!!!!


Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 04-11-2006, 10:31 AM   #1
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Diagnosis at last!!!!

After 9 months of not knowing i finally got my diagnosis today from my consultant..

I have crohn's disease. Apparently the affective parts are my small bowel/distal ileum. With numerous dilated loops.

I have started medication and am now awaiting another appointment to discuss the possiblity of surgery to the affected parts and get my medication changed to suit my flare ups when needed. I have also been refered to a specialist in crohns disease.


I have mixed feelings about this diagnosis............i didnt want it to be crohns but i had a strong feeling it was anyway. Its a horrible disease and a life long one with no cure. But saying that it could have been worse, i have been diagnosed with t so i'll will just have to accept it now and learn to live with it.


Im happy i finally know whats wrong with me, and happy that hopefully it will be more managable now.


SO thats it really, i just wanted people to know, hopefully to give them inspiration not to give up on finding out what is wrong with them. Took me 9 months but i have finally got there.


Thanks for all the support i have had in previous posts........big huge thank you to Angela.

 
Sponsors Lightbulb
   
Old 04-11-2006, 11:04 AM   #2
Angela22F
Veteran
(female)
 
Join Date: Jul 2005
Location: NL, Canada
Posts: 404
Angela22F HB User
Re: Diagnosis at last!!!!

I am so happy you finally have gotten your diagnosis.

Well, not happy it's Crohn's, nobody wants that , but I am happy that you can now start your road to recovery and feeling better.

At least now you know definitively what is wrong, and can start the proper courses of action in regards to a treatment.

I am so happy for you. It's been a long darn 9 months eh?

I am always here as an ear to listen and for support. And sometimes just to vent on those bad days, which we all still have. I really hope you continue to update us, as I look towards you as my inspiration and on my bad days, you're my rock

Angela

 
Old 04-11-2006, 12:12 PM   #3
dfroman1166
Senior Member
(female)
 
Join Date: Apr 2006
Location: Connecticut USA
Posts: 235
dfroman1166 HB User
Re: Diagnosis at last!!!!

Sharon....Your post freaked me out!! I just came on the boards to post the same exact message! I went for a follow up with my G.I. yesterday and after 2 years of pain,appendectomy,stump appendix, they finally have diagnosed Crohn's Like you ,I am also kind of relieved. I've started on medication to relieve spasms and feel much better.
Best of luck!!

 
Old 04-11-2006, 12:45 PM   #4
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Re: Diagnosis at last!!!!

hi Angela

I was so tempted to say "told you so" when i was in the consultants room today, but i didnt.

Its your turn now to get sorted!! Like me you have had pain for long enough. No one should spend their days in pain, when a person says they are in pain the doctors should listen. Make sure you stick with it until you are happy with what you have been told by your doctor. If he ask you to go for further testing, try and grit your teeth, smile and go for it. Even if these tests come back negative at least things are being ruled out and it is bringing you closer to what is wrong.

Like you I come in here for different reasons, if ever you need to vent give us a shout or a wave and i'll do my best to help you

Keep going and dont give up


Hi dfroman

Im just relieved that i know now, i went through alot and my health has drastically worsened in the past 9 months, i have other symptoms of crohns as well, i have the skin problems now. 2 years is along time to be told what is wrong!!! Again it took some determination to stick it out.

Im glad you finally know, and like you said you are feeling much better, thats great news. and hopefully you will continue to feel that way

 
Old 04-12-2006, 06:19 AM   #5
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Re: Diagnosis at last!!!!

Since i found out yesterday about crohn's i have been doing more and more reading on the illness. Ive been trying to look for different treatments, diet control, medications but i find i am getting bogged under with all the info out there.

Some of it is really useful but others are contradicting so it confuses me more as to which is best

I looked into buying some books about the illness but again due to the amount of books that are out there im unsure as to whether to buy a couple of them, main reason because i dont know which is good or which is bad.

I dont want to rely on doctors and medication to sort me out with this illness i want to do as much as i can myself to ease the symptoms and work along side the doctors and meds to ease it.

Im just at a lose as to where to start looking for accurate information.

Any ideas??

 
Old 04-12-2006, 06:52 AM   #6
clill_IU
Member
 
Join Date: Mar 2006
Posts: 62
clill_IU HB User
Re: Diagnosis at last!!!!

Sharon,

I'm sorry to hear that you have Crohn's, but I am happy that you now have peace of mind. Look into the parasite treatment that I was talking about earlier!! I've read a lot of good things about it....

Now If I can get my stomach sorted!....

Quick question: did you ever have upper gut pain and acid reflux? I've been having a lot of pain in my stomach, but not so much in the intestines...doctors have no idea what I have...weight loss too. Could be linked to anxiety, maybe not.

 
Old 04-12-2006, 07:23 AM   #7
Angela22F
Veteran
(female)
 
Join Date: Jul 2005
Location: NL, Canada
Posts: 404
Angela22F HB User
Re: Diagnosis at last!!!!

Hi Sharon, Me again

Try the Crohn's and Colitis Foundation of Canada - CCFC.

I know how you feel with too much and contradicting information that is out there. Sometimes my brain goes into overload lol.

I hope you find some information there though that can help. It is a trusted site.

Angela

 
Old 04-12-2006, 07:28 AM   #8
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Re: Diagnosis at last!!!!

Hi Clill

My pain tended to stay around my naval area and just below it, now and again it would go to my right side all the way down to the groin, which got mistaken as appendicitis once and they nearly bloody took them out even though i insisted that the pain was caused by my small bowel. Fortuantely they done x ray and it showed my small bowel was twsited.

The only time i get upper abdo pain, high up under my rib cage right in the sterum area is when my small bowel flares up and my large bowel cant work, build up of faeces. Again this would be the only time i would get heartburn/acid reflux. Apart from that i dont usually suffer from it, its just the constant pain around my small bowel area. Which i found out is because this is the area which is diseased by crohn's.

What is really worrying me is that all the information i have read to about crohns states that crohns gets complicated when bowel obstructions occur (which i get on a regular basis) and the only way to relieve the pain in this instance is by surgery, which i dont want. Apparently there is quite a large amount of my small bowel that is infected.


A story for you.................when i was 14 i am now 30, i was brushed off by a doctor as having IBS, after speaking to my consultant yesterday i actually had signs of crohn's back then. I never returned to the doctor as i felt that the symptoms were in my head due to how quickly he brushed me off. I used to hide the pain and gradually i was fine but always suffered from stomach problems. At the age of 22 i went to the doctors again with the same problems but it was slightly worse, again brushed off with IBS. Now at the age of 30 i finally found out what was wrong, i went through unneccessary pain, weight loss, vomiting and other problems all because the doctors brushed me off. And because it hasnt been controlled over all these years i have further complications............kidney,liver,sk in and eye problems.

What im trying to say is that, yes you may have an anxiety disorder but that doesnt mean its ok for doctors to say "its because of your anxiety" and also you dont need to accept that diagnosis, go with your gut feeling until you are happy with the results.

I know weight loss can be related to stress, which is different to anxiety so im not sure if it works the same way.

What tests have you had done, including blood work???



Thanks Angela i will look into that.

How are you feeling????

Last edited by Sharon76; 04-12-2006 at 07:29 AM.

 
Old 04-12-2006, 07:34 AM   #9
Angela22F
Veteran
(female)
 
Join Date: Jul 2005
Location: NL, Canada
Posts: 404
Angela22F HB User
Re: Diagnosis at last!!!!

LOL - we had to be typing at the same time

Me? I am mucking through. Waiting on the dreaded barium enema I have next wednesday the 19th. I'm just so tired - literally and metaphorically if you know what i mean. My new GP thinks now it is the large bowel - I think he's a quack! lol We will see.


TMI alert!
I have a question - do you ever get the gurgling/bubbling? This is a very common thing for me, it wakes me up at night. It is always accompanied by severe, naseauting pain... and I would associate this with diarrhea, but I am severely constipated. I only go now about once/twice a month if lucky and if I try to take a laxative, all I get is severe pain and cramping for hours until I get a movement, and then it still it is not a relieving movement if that makes sense. My beely is so swollen I look 8 months pregnant, and i cannot touch it at all - it is so sore and tender.

This is just the latest thing plaguing my mind at this moment.

Angela

Last edited by Angela22F; 04-12-2006 at 08:01 AM. Reason: Added Question

 
Old 04-12-2006, 08:18 AM   #10
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Re: Diagnosis at last!!!!

At least you are not waiting too long for your next test, and hopefully this time you will find out what it is. Have you ever had a barium enema?

I have, it isnt painful just uncomfortable and embarrassing for the person having it done. Mine took about and an hour to do and they had me rollling all over the bed to take different x rays. The worse bit is the prep before hand, and you will have to fast for a full day before the test.

But you'll be fine and before you know it, it will be over with. If you havent had a barium enema before, just feel free to ask away no matter how personal



I always get really loud gurgling noises, so loud they can be heard over the tv!!!

I usually get a severe cramping like pain first, then a few seconds later the gurgling follwed by another severe cramping like pain. I can only desrcibe this pain as like a contraction. What else accompanies it is when it cramps the area goes rock hard and you can see movement, almost as if im pregnant and the baby is moving about. I get balls of hardness all over my stomach, size of eggs. I asked my consultant about this and he said it can be caused by excess gas due to the my bowel not working properly to get rid of it, but it can also be caused by other things as well.

Peppermint works really well to settle the bowel and even helps to regulate a person to go toilet. Have you tried it?

Last edited by Sharon76; 04-12-2006 at 08:25 AM.

 
Old 04-12-2006, 08:45 AM   #11
Angela22F
Veteran
(female)
 
Join Date: Jul 2005
Location: NL, Canada
Posts: 404
Angela22F HB User
Re: Diagnosis at last!!!!

I have never had a barium enema before. I can't imagine it is too much fun, but I'll grin and bare it lol. My prep entails two days of fasting and those ugly "cleansers". I fell better knowing that you had it and it wasn't that bad. I'm assuming it is similar to the sigmoid, in where you lie on your side and they administer the barium... how long did they administer it for? was it just a quick thing, or did they keep pumping in barium? (If you don't mind me asking) I know I'm going to turn beat red!

That is exactly how I would describe the pain accompanying the gurgling/bubbling - like contractions - I can feel it move too. It sometimes starts right sided, and over a course of time I feel it on the left, like my body is trying desperately to expel something... I get the hard "masses" too. I've had my fiance feel my stomach, and he is always amazed at how hard it can get. I guess it could be gas, but I'm not a gassy person. It feels so much like when I was pregnant!

I have never tried peppermint. Thanks for the tip. I am willing to try almost anything at this point. To me, it feels like there is something blocking the way...

I am still stuck on the fact that there was still food in my stomach after 14 hours... surely that is not normal. From what I read, it should be half empty after 90 mins and then empty the rest in a matter of a few hours. I am going to bring this up to the doc again, He never really said anything about it. And the anemia - that doesn't happen "just because"... there has to be a reason, but my new quack is lost.

Ok, so I'm rambling again. Sorry. I just feel like I am going to keep going in this circle forever! This is just getting too much too handle anymore. I lost so much weight, I wasn't even trying... I'm a bit more evened out now weight wise, but the sore/tender belly is killing me.

One more question - Do you have lower back pain that you can relate to all of this? I am just falling apart. I told my fiance he has to trade me in for a newer model lol.

Thank you for all of your help

Last edited by Angela22F; 04-12-2006 at 08:49 AM.

 
Old 04-12-2006, 09:14 AM   #12
Sharon76
Senior Veteran
(female)
 
Join Date: Jan 2006
Posts: 682
Sharon76 HB User
Re: Diagnosis at last!!!!

lol, in the UK we have to have yearly tests on our cars called an MOT and i keep telling my husband that i need a full MOt doing and then a service!!!

here's what they done at my enema..................they asked me to lie on my left side, used a small tube that was connected to a bag of barium to send the barium into my bowel. He gently pumped it in, not all at once, slowly, then he stopped and added something else, he then left the tube inside me and tapped it to my buttocks (this bit was a bit off putting) and the tube stayed in place. I then rolled onto my back and he started to take x rays, about 10 minutes later he put more barium in and i had to alternate on to either side periodically. Expect to be full of wind..........after it was over he escorted me a private toilet where i could sit for as long as i wanted to expel the air. Bloody hell i farted for england!!!!!! Really embarrassing as it was really loud, but funny as well.

I think if you already have constipation problems then you should ask your doc for a laxative to take after the enema. This stuff sets worse inside you than the small bowel enema.


Dont give up, you wont be going round in circles for much longer, you will eventually get there. I found it really depressing when i was being passed about from doc to doc. I was once sat in my consultants office crying and asking to hurry and sort it. You will get there in the end and all this not knowing will be worth it because you will find out. I got to the stage of where i felt i was falling apart also, and its hard getting through that stage but you will.

Im not doctor but your symptoms relate so much to mine expect for the area, so maybe you have crohns in your large bowel. I dont know, but the symptoms are so alike. Or you may have a bowel obstruction and that is why you are so constipated.

I do get low back pain at times but i get alot of joint stiffness that is really painful as well, again im getting all these complications because i have been in one continuous flare up of crohns since last august and it hasnt been managed.

Instead of trying laxatives to help you go you could try the more natural things like peppermint, prunes or the juice from prunes, pure orange juice.........but not too much as you may get cramps. The peppermint wont work straight away to relieve cramps, you may notice the difference in about 2 days of taking it. You can take it in tablet form or fluid.

Oh one more thing............im telling you this because your small bowel cant absorb things properly..............for birth control i use the coil and i have been advised not to use the pill in future because i will not get full coverage due to my small bowel not working effectively therefore i could get pregnant.

 
Old 04-12-2006, 09:40 AM   #13
Angela22F
Veteran
(female)
 
Join Date: Jul 2005
Location: NL, Canada
Posts: 404
Angela22F HB User
Re: Diagnosis at last!!!!

Where can I sign up for a MOT?

lol - I am going to be so darned embarrassed next wednesday. I can just picture me with that tube taped there and me rolling around all over the place. But, as I've always said to myself, it is only one day out of my life - I cancelled the first sigmoidoscopy and then had it rescheduled, I don't want to have to go through the prep twice for one procedure anymore!

I have joint stiffness... but would never relate that to a bowel issue. Funny how much your bowel can actually affect. I was thinking athritis was setting in, and then was going to question my mom on how old I actually am! I am way too young to feel this darn old!

And I have never thought of my birth control being an issue! But it makes sense - malabsorption to the point of taking supplements by injection... sure the pill wouldn't absorp properly either! Thank you for opening my eyes on that one. I would be a wreck if I were to get pregnant now - although those chances are slim to none I really cannot get over how many issues and problems that can arise from malfunctioning intestines. It's crazy!

I agree, we do sound similar in symptoms. I think this is why I find so much peace and comfort from your replies. You have helped me a whole lot. More than I could ever thank you for.

Sorry for hijacking your thread. I didn't mean too.

Last edited by Angela22F; 04-12-2006 at 09:43 AM.

 
Old 04-12-2006, 11:42 AM   #14
clill_IU
Member
 
Join Date: Mar 2006
Posts: 62
clill_IU HB User
Re: Diagnosis at last!!!!

Sharon,

I've had an upper endoscopy, a gastric emptying scan, esophageal motility test, stool sample and bloodwork.....all came back clear. I'm not sure what your bloodwork results were, but the doc told me that because my red blood cell count and white blood cell count are normal, its highly unlikely that its IBD, either colitis or crohn's....i.e. no inflammation or infection.

You do a lot of thinking when you're miserable every day, and I'm trying to put the pieces together on what my symptoms are, when they started, and how they started. All I can really say is that this is very similar to a summer I had when I was 22, and still in college. I had been trying to bulk up, eating 1000's of calories per meal, taking protein shakes, and then one day, my stomach just shut down...couldn't eat anything...nausea in the morning, and progressively getting better throughout the day. It lasted about 3 months. I had been trying to bulk up again this past winter, I'm 29 now, and the same thing is happening again, but much much worse! Now to someone reading this, they would immediately say, "duh, cut out the diet", but I have done this several times in my life with no problems. So I don't know if its coincidence....

Currently, I've been diagnosed with funtional dyspepsia (chronic stomach discomfort), although my stools have been a bit loose as well (IBS). The doc believes that because I suffer from anxiety disorder, this is pretty common, especially during stressful times.

I'm really at a loss, and I don't know what to do next. It is possible to have Crohn's anywhere in the digestive tract, but if I had it in the stomach and/or duodenum, they would have picked it up in the upper endoscopy. I guess the next step would be a look at the small intestine....

 
Old 04-13-2006, 05:51 AM   #15
dfroman1166
Senior Member
(female)
 
Join Date: Apr 2006
Location: Connecticut USA
Posts: 235
dfroman1166 HB User
Question Re: Diagnosis at last!!!!

Do any of you know what to take for everyday pain for Crohn's? I was prescribed something called Hyoscyamine (nulev) that is supposed to help the spasms but I still have a very annoying ache in on my rt. side that shoots downward toward my old appendix site. I also have cramping all over and diariah(however u spell it!).
My Doc wants to do another colonoscopy on 5/1 to get a biopsy of my terminal illiem which is where we think my Crohn's is. He will then put me on something to control the disease, I'm assuming! In the meantime is there anything I can ask him to prescribe for the pain?! I've been told it's a big "no no" to ask for a narcotic pain medication,although seems to work. I also don't know if that would be worse in the long run for the disease. With 2 small children and my own business to run I have a hard time functioning! Any help would be much appreciated!

 
Closed Thread




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 03:19 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!