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Crohn's Disease Forum » Your Story » My Journey to diagnosis of Crohns Disease


07-23-2012, 10:28 AM   #1
pammypants
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Join Date: Jul 2012
Location: Telford, United Kingdom
My Journey to diagnosis of Crohns Disease

My name is Pam and I am a 41yr old mum of 4. I had problems with constipation and diarrhoea for several years and then in January of this year started with constant Diarrheoa, tummey pain, weight loss and loss of appetite. Went to my Gp several times and was only referred after 5 months of suffering. My Consultant said he thought I had Crohns Disease but would do a Colonoscopy to confirm the diagnosis. The Colonoscopy was done last Saturday and 8 biopsies were taken. Although I was sedated for the test I was awake enough to watch the screen as the test was being performed. I saw some sections of healthy bowel and then some not so healthy and the consultant was showing the other staff the differences. There seemed to be alot of bright yellow mucus around and some very red areas. He came to see me afterwards and said he was convinced it was Crohns but had to wait for the Biopsy results for absolute confirmation. Soo now just waiting xxx
07-23-2012, 11:47 AM   #2
Angrybird
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Hello and welcome to the forum, am glad you have decided to join It is never easy playing the waiting game to hear the results so you can get a definitive diagnosis and onto treatment, just know you have come to the right place for lots of helpful info and support.

This is a good time to start looking around so you can find out more about this disease - the more informed you become the better. You will see that there is lots of ways to hit this and what works for one may not for another, write down anything you may want to query with your doc and take the list with you when you go to see them so you don't forget anything - when is your follow up appt booked for?

Wishing you all the best hun and keep us updated on how you get on.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-23-2012, 02:34 PM   #3
Keepingfaith
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Welcome to the forum!

It is pretty common for their to be yellow mucus or bile when having your scopes from the clean out. It's probably from the prep going through fairly fast which is the whole point of the clean out. Hopefully you can get your DX soon and then look into diet modifications/treatment that's right for you so you can get onto the road of remission! There are some great people on the forum that can offer advice on just about anything in the IBD world.

If your scopes show things are negative for Crohn's(which can happen and you could still have Crohn's)there is an Undiagnosed forum with loads of people to help you with ideas for further testing.


Welcome again & take care!
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Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
07-23-2012, 02:39 PM   #4
pammypants
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Join Date: Jul 2012
Location: Telford, United Kingdom
Thanx for your kind comments. All my Consultant said was that my results should be back within 2 weeks and he will call me in when he gets them. On my Summary Discharge letter it states - Inflamed Mucin ? CD. does that make sense to anybody as I am struggling with the Mucin bit xxx
07-24-2012, 04:17 PM   #5
David
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Hi Pam and welcome

If I'm not mistaken, I'm guessing by mucin you could take that as being inflamed intestinal mucosa. The intestinal mucosa is made up of three layers with the epithelium being the innermost or one that you might describe as touching the food. My understanding is that one type of mucin makes up the membrane of epithelial cells.

Anyway, we're here for you anytime you need us

All my best to you.
07-25-2012, 05:05 AM   #6
pammypants
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Thankyou all for being so welcoming. Its just what I need at the moment. Thanx again xxxx
08-13-2012, 01:38 PM   #7
pammypants
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Join Date: Jul 2012
Location: Telford, United Kingdom
Well, finall had the diagnosis. Crohns in the large bowel and suspected Crohns in the small bowel, stomach, oesophagus and mouth. Hopefully can have the pill cam and no more invasive investigations. Have been put on 800mg Asacol 3 x daily, 40mg Prednisolone daily for 9 weeks and Calcium tablets. Now have a Specialist Nurse so things are moving forward. Have been through every emotion possible and then some. Hopefully I can get back on an even keel emotionally as feeling 'all over the place' just isn't me. xxxx
08-13-2012, 06:30 PM   #8
David
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I'm glad you have a diagnosis Pam. Are they planning to put you on any other medications or are they waiting for the pill cam to see if you have small bowel involvement?
08-14-2012, 07:24 AM   #9
pammypants
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Apparently no pill cam. Its a Barium follow through for me. Surely a Pill Cam would be better. Don't get why I have to drink that awful stuff when I could just swallow the pill n be done with it. Oh well, these things are sent to try us and they certainly do!
08-15-2012, 09:59 PM   #10
Amanda D
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Hi Pam,
I am glad that you are starting to get some answers and medications to address your problems. I was just diagnosed in June and also started taking Prednisone, and among other drugs later, I too have felt "all over the place" emotionally, mentally and physically. I am glad that you came to the forum earlier in your diagnosis-early treatment phase because I just did two days ago and wish I had sooner. Reading the posts really gave me a lot of perspective and relief that there are other folks out there feeling similar pains. Hope you feel better soon!
08-15-2012, 10:09 PM   #11
michaelearnest
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Location: Cuyahoga Falls, Ohio
Hello Pam and welcome - I have had approximately 15 colonoscopies and have never been awake to see what is on the monitor. Several years ago they used Propofol and it would let you wake up occasionally. Now they use Fentanyl and they do the count backwards with me from 10 and I never make it past 5. Its interesting that you were able to see the monitor, that could be good or bad. We all know what your going through with the emotions so feel free to rely on us to help you through those feelings.
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08-16-2012, 05:38 AM   #12
pammypants
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Join Date: Jul 2012
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I got pethidine(small dosage) and tiny dose of sedative. Saw pretty much everything and felt absolutely everything. Was in absolute tears with the pain during the Colonoscopy which is why I focused on the screen to try n take my mind off the pain(didn't work tho). Have been taking Prednisolone now since Monday and the effect is amazing. I can't believe how quick it has worked but am dreading 9 weeks time when I am off them as am worried I will be ill again afterwards. Still don't know why I have to have Barium follow through and not the Pill Cam. Does anyone have any ideas? I know they do the Pill Cam at my hospital but for some reason not for me. xxxxxxx
08-16-2012, 09:44 AM   #13
David
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Two thoughts are:

1. They suspect you might have a narrowing of your intestines and are worried it will get stuck.

2. It's more expensive and they're putting cost above all else.
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