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03-09-2015, 04:49 PM   #91
Cross-stitch gal
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How's everyone doing? It's been a bit quiet lately.

I'm off work on a vacation for a little over 2 weeks. Husband and I just celebrated our 15th anniversary. Still pretty stressful at work. But, even though I'm tired at least I haven't been noticeably in a flare. It seems like we've finally got the right amount of meds and supps per day now!
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
03-09-2015, 08:08 PM   #92
my little penguin
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Holding Humira here due to adenovirus
5 plus watery D a day /no appetite /fatigue/prolapse etc...
So no change or improvement
Gi placed him back on 80/20 formula since he hasn't been eating very much at all

Still insists its behaving like protalgia but no signs in the biopies
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03-09-2015, 09:10 PM   #93
Cross-stitch gal
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Eww. Sorry things don't seem to be going well penguin. hopefully it'll start turning around soon.
03-10-2015, 04:09 AM   #94
scottsma
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Ultrasound for possible gallbladder polyps in two weeks.Feel sick if I over eat,so can just manage a few mouthfuls of food.I find little and often best.The nasty 5wk flare I had whilst on steroids is over.
We lost our old dog 6wks ago to Cushings disease and are considering another,but will wait awhile in case I need surgery.Life's not the same for us without a dog'
Congratulations on your anniversary Cs.Gal.We have a big one next year,but if I told you how long I'd give my age away,and a girl has to keep some things private.
03-10-2015, 03:16 PM   #95
Cross-stitch gal
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Sorry you're still not doing well scottsma. Always seems like everything comes at once. Congrats on the big one next year! 50 years is a great accomplishment! Hehehe!!!!

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04-21-2015, 10:31 PM   #96
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What's happening everybody? I hope no news is good news around here...
04-22-2015, 03:07 AM   #97
scottsma
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All ok this end,thanks for asking,and excuse the pun.Still waiting for results of ultrasound re: gallbladder.It's been over 3wks and I should have heard in two,but I'm assuming the Easter hols.are to blame.I've had some sharp cramping this morning,but a couple of tablets seem to be working.
I hope you and everyone else are keeping well.................One day at a time eh?
04-22-2015, 03:24 AM   #98
RickUK
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To be fair I have been pretty ok myself for a good few months now, Asacol (mesalazine) is working wonders. Apart from having a funny turn in work and my employer giving me the impression they didnt believe I had a form of UC, everything is good!
04-22-2015, 03:49 AM   #99
buttER
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Hi guys
I had another colonoscopy and have mild inflammation from the anus to half way through the large intestine. The doctor told me and wrote it on a form for me to take home.
But the biopsy results came back normal, so now the same doctor says there is nothing wrong.
This is the third time this has happened - the time before I had ulcers and bleeding but still everything was "normal" and therefore the inflammation did not exist. Thankfully my family doctor agreed to put me on Asacol which really helped but has not completely got rid of the symptoms.

Just wondering if you have always had a positive diagnosis from the biopsies?

Thanks
04-22-2015, 04:17 AM   #100
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Glad to hear mostly good news here!!! scottsma, I sure can understand your anticipation of hearing those results! Hopefully you'll be able to hear something really soon.

Rick, that's great that things are working out for you!!! Hopefully all will continue going well!

Orange, I'm sorry to hear they still haven't figured you out and that you're still suffering. I really can't remember on a diagnosis from biopsies however, I've had a doctor before who said she said she saw evidence of inflammation without a biopsy. But, hopefully something can be done soon too for you no matter what.

I'm doing alright, although still under a lot of stress at work. I always seem to be in trouble with my manager whether it's my doing or not. No transfers or new positions have been working out for me yet. Wish I had better news from here...
04-22-2015, 04:25 AM   #101
buttER
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Yes this You have inflammation but because we don't see it in the biopsy therefore it does not exist is hard to deal with. It is the lazy way out because no-one seems to be interested what is causing the inflammation. So much easier to say that there is nothing wrong.

When we don't have to worry about our illness there is always something else to bother us! Stress at work is no life quality. Why has the manager got it in for you? Must be a manager thing, there are some pretty mean ones out there (although I do know some very good ones too thank goodness).
04-22-2015, 05:25 AM   #102
RickUK
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My GI told me that when a biopsy comes back normal it doesnt necessarily mean you dont have IBD. Because when they take swabs it depends what they looked for. He told me during colonoscopy that i had nonspecific proctitis which is UC in the rectum (in plain terms).

The biopsy swabs are taken to rule out other causes of the inflammation (campylobacter, shigella etc) and confirm that the GI's first instincts are correct.
04-22-2015, 05:27 AM   #103
RickUK
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Hi guys
I had another colonoscopy and have mild inflammation from the anus to half way through the large intestine. The doctor told me and wrote it on a form for me to take home.
But the biopsy results came back normal, so now the same doctor says there is nothing wrong.
This is the third time this has happened - the time before I had ulcers and bleeding but still everything was "normal" and therefore the inflammation did not exist. Thankfully my family doctor agreed to put me on Asacol which really helped but has not completely got rid of the symptoms.

Just wondering if you have always had a positive diagnosis from the biopsies?

Thanks
My GI gave me Asacol, it is mesalazine, and is specifically for any forms of UC, and i "think" crohns ileo-colitis. They wouldn't give you Asacol if you didn't have IBD I am positive
04-22-2015, 05:29 AM   #104
2thFairy
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My GI gave me Asacol, it is mesalazine, and is specifically for any forms of UC, and i "think" crohns ileo-colitis. They wouldn't give you Asacol if you didn't have IBD I am positive
Some GI docs are now giving Asacol for IBS sufferers, as they are beginning to acknowledge that IBS can cause inflammation, just no ulcers or bleeding. I'm sorry to hear that you still have no solid answers.
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04-22-2015, 06:06 AM   #105
buttER
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My GI told me that when a biopsy comes back normal it doesnt necessarily mean you dont have IBD. Because when they take swabs it depends what they looked for. He told me during colonoscopy that i had nonspecific proctitis which is UC in the rectum (in plain terms).

The biopsy swabs are taken to rule out other causes of the inflammation (campylobacter, shigella etc) and confirm that the GI's first instincts are correct.
Thanks for all the comments!

The hospital thinks it has ruled out all the likely bacterial/parasitic culprits with blood and stool tests. Seeing as I lived in South Africa and Namibia as a child and I have been ill since I was a child I hope it is not something exotic that has nestled somewhere and is difficult to detect. I don't think they specifically looked for infection in the biopsies unless something started waving at the pathologist.

So RickUK your doctor is happy to say nonspecific colitis and to try giving a treatment? I will have to try and persuade my doctor for the same approach. I mean inflammation seen in 3 different colonscopies is not coincidence. At the moment he wants me to stop taking Asacol because there is nothing wrong with me.
04-22-2015, 12:46 PM   #106
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King of Orange - yes. My gastroenterologist called me in for an appoiintment to discuss my biopsy results. He said the biopsy results were "as normal as they can be." He then said "I am going to give you Asacol Mesalazine which is a drug to hopefully keep your proctitis in remission" *Thats when i asked him if it was a form of IBD and he said what i stated in a previous post, it's essentially UC in the rectum as oppose to colon*

But he also definitely told me that biopsies can come back normal even with IBD as it depends what the biopsy looked for. My stool samples all came back normal when checking for parasites and bacteria too... although my faecal calprotectin came back very elevated. Have you had this test? Might be worth having it if not just to re-confirm that there is inflammation for a 4th time!!
3 different scopes finding inflammation each time is a bit obvious to me that something is going on in the gut


Just as a note, calprotectin is a stool test which looks specifically for inflammation in the gut.
04-22-2015, 07:05 PM   #107
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In 2013 I was diagnosed with Ulcerative Colitis or more specifically, Ulcerative Proctitis since my inflammation was in the rectum by a flexible sig test. Last year 2014 we did a colonoscopy and my same doctor said he found no inflammation even though he did take some biopsies to make sure. I'm still taking my medications, however I did stop taking the Canasa for almost a year because I've been doing so well. Tonight we might be starting up the Canasa again since I saw blood.

But, I guess what I'm saying is that it would depend on what medication it was before stopping any of it. It's one thing to quit my suppositories, it's quite another thing to quit my oral meds. I can't shame anyone, cause I too quit all my meds just after I got married for a little bit. But, after my last flare there's no way I'd do that again.
04-23-2015, 08:45 AM   #108
RickUK
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The sister nurse (who my consultant has given me contact details for incase of any flare-ups or issues), has just given me a prescription for suppositories for my proctitis as she said they may work faster than Asacol as they are being inserted right where the inflammation is almost.

Any of you prefer suppositories to Asacol or Pentasa etc
04-23-2015, 10:07 AM   #109
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I've used Asacol supps for 9yrs.Morning and evening while flaring,evenings only for remission.I have on occasion stopped using them for a while,but usually have a mini flare so it's sensible for me to persevere.They work very well for me,but I haven't used anything else to compare them with.When I did stop using for a couple of months,inflammation was discovered in my splenic flexure via a colonoscopy,and calprotectin levels were 300.I don't know why this happened.Tests are ongoing.For me suppositories work quite quickly,less than a week usually.Good luck.
04-23-2015, 03:52 PM   #110
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Whenever I've been prescribed, I've always used both supps and oral. I believe the reasoning for this is to make sure to get at it both ways.
04-23-2015, 06:24 PM   #111
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Suppositories worked great for me. Even when all meds failed me, the suppositories helped the pain and spasm. Don't stop your oral meds unless instructed to do so. You can use both at the same time.
05-09-2015, 09:41 AM   #112
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Hello everyone.

I was wondering if anybody here has any experience with Balsalazide?

I've been diagnosed with Crohn's Colitis since the end of 2011 and after a bit of trial and error I was symptom-free for a couple of years whilst taking Mezavant and Azathioprine. With the doctor's agreement, I stopped taking the Mezavant about 8 mths ago due to fatigue and aching joints. All seemed well until about 3 mths ago when My symptoms returned, but it just seem to be proctitis rather than other parts of the colon.

I've been using Pentasa supps for 6 weeks which helped at first, but they are now losing their effectiveness (that happened first time round, too) so I need to go back onto another 5-asa. I was hoping that balsalazide, being a bit different from mesalazine, might not have the same side-effects.

It's not something that I've seen much about on this forum, but I'm keen to find out more before I ask the consultant about it.
05-09-2015, 11:18 AM   #113
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Hi Nitty,if you type Balsalazide into search at the top of this page,there will be lots of info.for you to digest until someone who has experience of it,comes along.Like you I was originally Dx'd with Proctitis but is now also Crohns colitis,but I'm not flaring just now so Gastro says to use Asacol for maintenance......Feel better soon.
05-09-2015, 12:52 PM   #114
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Thanks scottsma,

I know your neck of the woods well - I grew up in Whitley Bay. I don't live there anymore but my sister does.
05-09-2015, 08:17 PM   #115
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I'm currently taking Balsalazide (Colazal) for my UC. I originally had pancolitis which was treated with IV steroids and pred taper with Asacol. My insurance doesn't cover Asacol though so I was switched to Colazal. The only side effect I've noticed is a bloated belly that gets worse throughout the day - it was much worse on the pred though so I think it was a combination of the two.

The Colazal isn't controlling my UC though. After tapering off the pred my symptoms have slowly returned, though it's more proctitis at the moment I think. I don't think there are generally many side effects with Balsalazide, it seems to be one of the milder drugs.
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05-10-2015, 04:44 PM   #116
nitty
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Thanks 1sickpuppy.

I have found that neither a 5-asa nor Azathioprine on their own will keep my disease under control, but it would be useful to try the different type of 5-asa and see what side-effects I get. The nurse had suggested Salofalk, but to me that is just the same as the Mesalazine but with a different coating, so I expect the side-effects would be the same.

At least from this I have learnt that I will have to be on some sort of meds for life. When you have a drug-induced remission it's so easy to think that perhaps you don't need the meds after all. I guess that won't be the case for me, sadly.
05-11-2015, 05:31 AM   #117
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Forgive me if you've already mentioned this,but have you tried suppositories ? They've really helped me,but they are really only useful for the lower bowel/rectum area.
05-11-2015, 05:45 AM   #118
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Yes, I've been using Pentasa supps for the last 6 weeks to see if that would help me get back on track. Despite an initial improvement, I am now on a backwards slide and getting worse again. Looking back in my diary, this is exactly what happened early on in my treatment. I'm just disappointed that this is all happening again despite still being on the Azathioprine.

I'm just in the process of putting together an e-mail to my IBD nurse today, so I'll see what she says.
05-11-2015, 05:51 AM   #119
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Maybe Asacol supps.would help ? I don't know.We're all different,and what works for one doesn't necessarily work for others.It's all trial and error.Good luck.
05-11-2015, 06:03 AM   #120
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Thanks scottsma,

I may be being fussy, but I also don't want to be shoving things up my backside for the next 40 years or so I can avoid it, especially if they're not being that effective!
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