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A huge set back.

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Ulcerative Colitis
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Posted 9/3/2009 3:37 PM (GMT 0)
There I was thinking things were improving, we were on holiday in Paris, the entire duration of the trip felt like I needed to go to the toilet, and had a couple of close calls.
So Wednesday we were wandering around the Louvre, I had that persistent nag in my tummy, but that had been there all week, then it happened I had a huge accident, with 60 seconds warning and unable to find a toilet. I was mortified, my other half was fantastic, but why is this happening? He'd had an upset stomach during the week too, I think it may be because of the mineral water as I had not altered my diet at all during the trip.
Why can I not hold on? Does this mean there is still inflammation? I had 2 accidents in April when my symptoms were at their worst, before my treatment started.
I don't know what else I can do, my diet is as bland as it can be. Any suggestions.
I've cried for almost 2 days straight and I am so lucky that my other half is wonderful, but I feel that I've taken a huge jump backwards. I don't want to go outside.
Posted 9/3/2009 3:59 PM (GMT 0)
Hi Soretum
I am just about to turn 30, I have 2 children and am really suffering at the moment, I had proctitis diagnosed after the birth of by first child in 06 and it cleared up quickly about 6 months after birth using pentasa suppositories, this time however after having my second child I havent been able to get rid of it, I have proctitis and ulcerative colitis up the the first corner of my colon.

I am housebound and having accidents just running from my bed in the morning to the loo.... its sooo embarrassing, I have been on asacol and then onto salofalk, then last 2 weeks on the predfoam but that just made it worse, I have an awful pain in my bum that ive been taking paracetamol to keep to a minimum.

I am seeing my doctor tomorrow to see what hes going to suggest we do next, im also thinking i might see a nutritionist as I have lost 3 lbs in the last week.

I was so sorry to read your above post, its just so embarrasing, the urgency is so bad that even if youd have seen a loo you wouldnt have made it! I wonder if you caught a bug ? My doc said if i catch a tummy bug it will just flare everything up!

I dont know what to suggest as I am in the same boat, but its nice to know im not alone in this but at the same time wish no one else had it!!!

Taz x
Posted 9/3/2009 9:58 PM (GMT 0)
It's possible you picked up some bug while traveling that made your symptoms worse. Have they improved any since you've been home?

In my experience, it's not necessarily a bland diet that helps, but restricting or eliminating certain foods that tend to be problematic for the majority of UC sufferers. The New Eating Bad for a Right Gut has some great guidelines on what foods are generally safe and those that often cause problems for IBDers.

Also, the book Listen to Your Gut offers massage techniques and tips for more fully emptying the bowels when you're in the loo and controlling the urge when you're not.
Posted 9/4/2009 12:50 AM (GMT 0)
I am so sorry for both of you.

When I was feeling really bad I was completely unable to hold it for any length of time. Luckily I was home often so I don't have any awful stories. I have stories but they are just me at my house unable to make it. 

I hope you are able to treat this quickly so you can get back to normal.

1200 mg asacol is not a lot. I take 1200mg 3x a day! Maybe you can increase the dose?

Posted 9/4/2009 7:51 AM (GMT 0)
I overdosed on immodium to get me home, I haven't ben to the loo since then (almost 2 days), and am very uncomfortable with wind at the moment.
My bland diet is prescribed by the dietician, it's a very strict low residue diet.
I'm on 1200mg of asacol three times a day.
The only thing that I can think it may be is a change in water, I've always struggled with my tummy when I've been away, even before all of this, and the only linking factor is drinking lots of mineral water instead of tap water.
Posted 9/4/2009 8:29 AM (GMT 0)
I tried the No pain in one day diet .. that tells you to only drink mineral water... it did help, but im not good at being on diets other foods tempt me too much !! Im off to the docs in an hour, my neighbour is coming along with me to help with kids,.... I just hope that I can get something that will help. Have any of you been on Canasa ? Ive seen a few people have taken it and has helped but only sorted a flare once.

I will let you know how I get on !

Nessie x

meds had so far : pentasa, mesalazine/asacol, salofalk, predfoam .....
Posted 9/4/2009 8:30 AM (GMT 0)
ps ive taken imodium already ... hoping it will keep me from pooping while waiting at the docs ..... its a private hospital ... how awful would it be to poop !! omg ! :(
Posted 9/4/2009 9:43 AM (GMT 0)
Good luck Nessie,
Never been on Canasa, but hope they can find something that works for you, this must be completely intolerable for you.
Maybe they'll start you on oral steriods, it's the thing that worked the quickest and was the most effective for me.
Good luck again hun, let me know how you get on. x
Posted 9/4/2009 11:58 AM (GMT 0)
Hiya


Im Back! Well he thinks its gotten worse as none of the drugs have made any difference.

Im back in on Wednesday for another colonoscopy as he wants to see what he is dealing with now. Then hes thinking if its alot worse we may need to go on immunosuppresants or some oral steroids :(

This is one thing I could do without having at the moment!! with 2 kiddies its hard work, i feel so drained all the time! And particularly at the moment, i need to go see my chiropractor thats what i did when i had this last time!!


Sore tum are u on facebook?
Posted 9/4/2009 1:57 PM (GMT 0)
 

I'm sorry to get off the subject but i see you have 2? fistulas,  I'm sure I have one  o cause I leek all the time and have to wear protection .  Is that the symtoms you have and I see one fistula is in remission...is that possible  I thought you always had to have surgery to close it.  I can't go to the Dr. I want to until Jan.  when I can change our insuranse to HMO that's all he takes....bummer.

Thanks for your help.

Sue eyes

Posted 9/4/2009 3:17 PM (GMT 0)
Yes Tazbum I am on facebook, in fact I'm pretty much addicted to it!
Sue.....my second fistula is still playing up occasionally, but the surgery couldn't find it during the last 2 surgerys, however I can confidently say that it is still there. Where are you leaking from, and what are you leaking? I'm very lucky I'm in the UK so do not have the associated insurance issues.
Posted 9/4/2009 3:22 PM (GMT 0)
Tazbum, as scary as immunosuppresants are and I was petrified of the steroids, they did really help and I image your life is fairly stressful at the moment, surely being able to leave the house without worrying would help?
I felt remarkably better within 5 days of starting the steriods, the side effects can be scary but everyone is different and maybe you'll be one of the lucky ones that suffers with bags of energy and a monster appetite (I was!).
Posted 9/4/2009 3:42 PM (GMT 0)
Why the cod liver oil? I think that would give me urgency, but I suppose if you are used to it...
Glad you are doing better.

It's so stressful to travel that I don't do it nearly as much as I would like to, especially to places where I don't know what to expect. I have to travel a lot for work, but to places where I know my way around.
Posted 9/4/2009 3:44 PM (GMT 0)
I would think pentasa suppository would be the same as Canasa but not too sure. I do know Salofalk suppository is what they call Canasa in Canada. Canasa/Salofalk helps me a lot.
Posted 9/4/2009 3:47 PM (GMT 0)
Peety: The cod liver oil is because my knees get sore mad
Oddly I had stopped taking the cod liver oil, zinc and probiotics whilst I was away.
Never thought of the oil worsening the urgency....may have to look into that. Fish oils are recommended though?
Posted 9/4/2009 6:46 PM (GMT 0)
 

I'm leaking from my rectum mucus & blood & the normal stuff only more like squishy or even gassy.  Is that what you had,  I really don't care for another surgery again,  Whatywere your surgeries for,  your fistula? idea and was it painful.  I hear they use glue sometimes.  I just want to be whole again without all the problems and tears.

Sue

Posted 9/4/2009 7:14 PM (GMT 0)
Sue,
I was leaking from 2 holes above my anus, this is where the abssess had tracked to (forming fistulas), it's cyclical and it's usually pus and blood when they do burst. The surgeries were for the abssess/fistulas, and unfortuately they didn't tickle. It was because of the fistulas that they performed other tests and found out that I have ulcerative proctitis.

I do not not leak from my bottom hole, I have had 3 episode of complete incontinence of faeces, but that has been put down to the inflammation effecting bowel control.

I did previously suffer with mucus and occasional blood, my real problem is still frequency and urgency.

Do you have a diagnosis? what meds are you on?
Posted 9/4/2009 7:55 PM (GMT 0)
I have ulcerative proctitis also but I'm not on any drugs right now.  been on all of them almost including Remicade and far too much prednison,  always allergic to them.  Have spent more then my fare share of the time in the hospital the last 8 yrs.  Are you sure the one fistula wasn't a pilionidal(sp )cyst.  I had surgery on one about 30 yrs ago also.  those things hurt when theybecome inflammed.

Lifes so short to worry about accidents so much and when you eat and how much if your leaving the house.

They say this too shall past but for the last 1 1/2 yrs. I've had inflamation in my rectum that's affected both mine and my husbands life!  But I also know there are many people out there a lot worse off then us.

Just keep praying  for all of us!

Sue

 

Posted 9/5/2009 8:00 AM (GMT 0)
I'm sure it's not a pilonidal sinus, they were abssess that invovled the anal sphincter. The examination under anaesthetic confirmed that.
It definately sounds like you're flaring, what are your plans to deal with it and is the GI aware?
Posted 9/5/2009 10:12 AM (GMT 0)
Yes he's aware of it but not sure what to try on me next, that's why I'm waiting until we can change ins. to go to the other specialist. I'm not flaring to the point where I can't work or function in the outside world thank God...I was like that for about 4 months last year and ended up needing 3 units of blood to get me on the road to recovery.

Mine was a cyst not a sinus and came out for the 1st time when I was pregnant had it removed about 30 yrs ago, wish I'd of done that a lot sooner. All the pain it caused.

Thanks so much for all your help too! It's great to talk with people who understand our problems, and say"Gee you look OK".
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