Recently Diagnosed

[duck68]

Hi there

I have recently been diagnosed with Crohn's (at 42 yo). My whole colon is affected/inflamed but thankfully my terminal ileum and small intestine are all clear. I've never had any bleeding. I think there is a some UC as well. Yay for me...

I've had chronic diarrohea for a lot of years (thought it was a result of having my gallbladder removed at 27 and not eating well) but I buried my head in the sand (because I didn't ever want to have a colonoscopy!!) and kept telling myself it was just IBS, food intolerances or bad diet etc. The past 8 months or so though my symptoms got worse and I decided to bite the bullet to see my Dr. I thought I might have had Coeliac's!!

After a few blood tests, I was sent for the dreaded colonoscopy/endoscopy! After I woke up from this procedure, the specialist said I had Ulcerative Colitis and that it would need treatment - she'd also taken heaps of biopsies too. I couldn't see her for 4 wks so I went to my referring Dr about possible treatment etc - some test results from colonoscopy had come to her and indicated that I had Crohn's and was also Lactose intolerant...

Went to the specialist appt (in May) and was started on Prednisone 50mg initially and started tapering down - currently I'm on 20mg. I was also put on Salazopyrin as well - symptoms were diminishing which was nice. But I had a lot of headaches. Specialist changed medication to Mezavant (new in tablet form in Aust - she didn't know the correct name at the time, so had to wait for prescription which took a few days and then the pharmacy didn't stock it and had to order it!!) In the meantime I was only taking the Pred for about 8 days as was told to stop the Salazopyrin. During this 8 days my symptoms came back again.

I've now been on Mezavant for about a week and a half and I'm not sure it is working properly just yet - so hope it won't take too much longer. I have good days and bad days of D - but I also contribute this to my diet. I'm still trying to work out how I'm going to deal with the food issue - I love my food!! One symptom I didn't have was weight loss!!

I get bouts of extreme tiredness - but glad I now know why I've been so tired.

I found this forum and have read lots of interesting information about Crohn's and how it affects everyone differently. I don't feel that mine is as bad as others on here and for that I am thankful...I have put up with it for so long that I guess I have learnt to deal with it to a degree - but I do have days where I am very frustrated about it all!

I'm sorry I have rambled on here - I didn't mean too!

Take care everyone, chat soon :ysmile:

 

[duck68]

Hi Dexky

Thank you for your reply to my thread. It is my first 'post' and was a little nervous about talking about all this stuff in a forum - but I've been visiting it a lot in the last week or two and am amazed at the wonderful caring people here.

With regard to the meds - Mezavant has active ingredient Mesalazine and Salazopyrin has active ingredient Sulfasalazine - thank goodness for Google. haha

Obviously us Aussies need to name our medications differently to the rest of the world!!

 

[Dexky]

Hey, you guys probably invented them anyway :lol:.

 

[DustyKat]

Hi Vicki and :welcome:

Glad you found us, you have certainly had a journey over the years. I'm sorry I can't offer any advice about the meds but you have found the right place for support and information.

I hope things work out for you and soon.

Take care,
Dusty

 

[Crohn's 35]

:welcome: to the forum! So glad you decided to join us. I am glad you were able to tell us your story, and there are many with far long posts and they are welcome. The drugs you are on is fairly mild, I am on the sister drug Pentasa and have been on another type yet it affected me. Asacol is another, which most people who have UC are on it. Pentasa doesnt affect me. Steroids are a different story, love\hate them.

People's symptoms come and go and diet does help somewhat, sugar and dairy is best to be avoided, I too have learned to keep the weight on, being older probably doesn't help :tongue:

Get your iron and b12 checked, sometimes the disease itself causes us to be fatigued.

I was scared of having a colonoscopy,but not now, it is the preferred test for me, and the prep is pico salax...the hardest part is not eating for two days lol.

Lots of fantastic and wonderful people here, to help support and give you our experiences welcome!:smile:

 

[duck68]

Hi Jettalady - there are so many different medications I've seen mentioned on this forum - so confusing!! I'm hoping things will settle with me soon. I have had all the blood tests, stool tests, a ct scan - all my iron and folate, b12 is good. White cells were a bit high so hope they will come down now I'm on the meds. I'm Vit D deficient so have started taking capsules.

Heading back to the specialist again on 28 July (after I have some more blood tests to check on things again - blood count etc). So we'll see where I'm at then!!

:biggrin:

 

[Amenace]

Hi Vicky


I have just read your post and it sounds pretty similar to me.

Can you tell me what your symptoms were?

I've haven't had a bleed, i was only just diagnosed lactose intolerant.

Another fellow Aussie

Lola

 

[duck68]

Hi Vicky


I have just read your post and it sounds pretty similar to me.

Can you tell me what your symptoms were?

I've haven't had a bleed, i was only just diagnosed lactose intolerant.

Another fellow Aussie

Lola

Hi Lola - Welcome!! My symptoms were pretty much just chronic diarrhoea over the years that got worse from September last year and also extreme tiredness. I've never had any bleeding either. Certain foods seemed to affect me - cappuccinos (I thought it was the caffeine), spicy or fatty foods. But in the end I felt every thing I was eating was making me run to the loo 10-12 times per day. That's when I thought it could be gluten intolerance and my GP sent me to the specialist for the colonoscopy/endoscopy. I also had CT scans and numerous other blood/stool tests too. Thats fun!! Over the past couple of years though, my regular blood tests showed my white cells and platelet levels were higher than the norm (indicating possible inflammation/infection) - so the GP was just monitoring those - and as I never told her about the diarrhoea issues I had she was shocked when all my results came back.

Anyway, turns out to be Crohn's Colitis (that's what the specialist refers to it as) because my whole large intestine was inflammed but parts had granulomas (?)... I don't have any evidence of the Crohn's being anywhere else at this stage - thankfully.

That's about it really...we are trialling different medications at the moment - Prenisone and currently Mezavant (which is new in tablet form in Oz). Have had improvements but I'm still not totally happy as still go to loo often some days (anywhere from 2-5 times) - but I'm still trying to work out which foods I should avoid and that is proving hard for me... I have my next appointment with specialist next Wednesday, so will see how she thinks things are going! Another blood test tomorrow or Friday before I see her! Yay!!

Have you had any other diagnosis yet other than the lactose intolerance or are you still in the initial stages of testing?

Keep in touch - :ysmile:

 

[Astra]

:welcome:

Hiya Vicki!

xxx

 

[Amenace]

Thanks Vicky

Am in the process of getting my blood work done.

The results of my colonscopy were that i had moderatly active colitis and ileitis. My doc made a comment on the bottom of the repot "would be consistent with Crohns" so thus the blood tests.

Adter reading that i have gone off and googled like mad. Everything i a reading is freaking me out.

I have never really suffered from diarrhoea and have been having abdominal pain for maybe the last 10 days. I thought that it was being lactose intolerant.

I will have all my answers on Friday the 13th August - great day to pick.

 

[duck68]

Hi Lola - I'm sure it will all work out. There are a lot of scary stories out there but until you know what is going on try not to panic...I know it is hard - just wait to see what the outcome of tests are and go from there - day by day if you need to. At least you have a supportive family - that is really important especially if you are feeling a little unsure and upset. And of course, you've got all these wonderful people on this forum.

Write down any questions you might have for your Dr before your appt so you don't forget them while you are in there. Take your hubby (or someone else) with you if he can get there - it helps - moral support and a backup because you might have information overload. I know I did.

:hug:

 

[gypsigirl28]

hi Vicki
you will find that everyone on here is very nice, I am a new member as well and they have been very welcoming. good luck

 

[silver]

Hi Vicky and welcome! There's a lot of interesting information on here, I've learned a lot since I joined

 

[tmgread]

Hi Vicky. Your story is similar to mine. I was just diagnosed this year at age 48 and my entire colon is inflamed, but nowhere else. The doctor wanted to put me on prednisone, but I had a really bad experience with it years ago for Bell's Palsy and didn't want to take it, so I'm on Lialda.

 

[Regular Joe]

Hi Vicky,

Welcome to the forum. I understand those days that you're frustrated. I had a couple of those lately.

Hope we can help.
Joseph

 

[Garfieldusa]

Good luck to you! I was diagnosed 12 years ago but looking back I know I had the symptoms for years before I was sick enough to be checked for disease. I thought it was normal to go to the bathroom after every meal or snack. I didn't know until I was diagnosed that normal people don't go that much! It's funny to me now.
Talk to ya soon, Lisa

 

[Nancy Lee]

Hi Vicki!
Just popping my head in in the door
to say welcome to the forum!!

Hugs~Nancy

 

[Garfieldusa]

Thanks everybody for the warm welcomes you give to everyone.

I'm having so much pain in my left side this week that it's difficult to sit or lay on that side. Hasn't been this bad in long time. Always have some amount of pain on the left side just not like this. Can't get in to my doctor until Aug. 17 and I refuse to go see doctors that don't know my case. Anybody have this happen? I know a lot of us have the left side pain but have you had it get really bad all of a sudden?
Lisa