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Posted 5/4/2010 7:22 AM (GMT 0)
 

Hello everyone, I'm new to this forum as have been posting on the uk version. Sounds like you guys have so much experience and knowledge about this awlful disease.

I apologise for the length of this post in advance. Some back ground, I was dagnosed with UC at 19 (some 20 years ago) been well for best part of 10 years. a couple of nasty flares recently, over the past 2 and half years, each lasting 4-6 months before being bought under control.

Generally I have treid all the usual meds, presently on meassavant, colifac, colifoam enema. oral pred doesn't make any difference! 

I was in hospital last week for 4 days taking IV steroids. While there I saw my symptoms get so much better......less bleeding, mucus, no tummy pain. I've been home since friday and am now bleeding just as I was! I had the same treatment last year which sent me into remission for 6 months?????so why not now?

Thank you for listening, any words of wisdom, experiences alike or general prediction of the future would be greatfully received.

Be well

Debbie     

Posted 5/4/2010 1:05 PM (GMT 0)
Welcome!
I have heard that sometimes the tried and true meds cease to work as well over time..... luckily, there are other things to try (which wasn't necessarily the case 20+ years ago when some of us first joined this "club" - !)
But, a question, have you been on any maintenance medication between the flares?
And have you tried 5-ASA enemas?

Predictions for the future would be impossible. Some people go into long remissions, some seem to have the disease "burn out" and go away (there were some recent discussion here about that) and others get worse. None of us can predict which camp we'll fall into.....

Again, welcome. I have found much help here and a lot of knowledge; it's a great community!
Posted 5/4/2010 1:11 PM (GMT 0)
First you should see a doctor.

Second, if your blood is red and not dark ask for rectal meds like mesalamine or Rowasa enema (I didn't see that you took these). If the blood is darker or stools very dark the blood is coming from higher up and needs professional attention. Enemas work for lower bleeding.

Third, consider diet modification along with meds. Everyone seems very different in this area but I stopped bleeding after 10 years when I went gluten-free.

Don't let docs tell you bleeding is OK, it isn't. It's a sign of ulcerations and your colon won't heal until the ulcers stop bleeding.

Best wishes. Good luck.
Posted 5/4/2010 1:57 PM (GMT 0)
wow! Thank you for the quick responses.......I am really grateful.

I'm not taking any radical maintenance drug, been on mesalazine for about a year (not entirely sure if this is doing anything) was on asacol previously to that.

I am taking predfoam which is a topical enema twice per day. They do help alot.

I have had a conversation with my consultant about azathioprine.....which he checked my bloods last week so I can start that as soon as we see the effects of the IV. When I was discharged from hospital on Friday, the frustrating part is I was not showing any signs of my colon being poorly....how can this turn around so quickly??

Anyway after posting on here this morning, i went to see GP (who knows very little about me) and have got some oral prednisolone. So am starting that today. My biggest fear is I do nothing and by the time my consultant gets back I am back to square one!

Oh and my diet, Living with this for 20 years....... I've done gluten free, wheat free and tried cutting back on all the food vices. I've been on complete bowel rest for 6 weeks now and have just in the past 3 weeks been lactose free.......so you'd think there is very little to get through???????Which is why the not healing is worrying me more than usual...... 

Just one other thing, the reason I wasnt going to take the oral pred was they make me feel so rubbish! slowed down, not myself, disorientated and abit shaky. Does anyone else get this...........?

Thank you so much

Debbie         

Posted 5/4/2010 2:06 PM (GMT 0)
I think azathioprine would be the way to go right now as long as your doctor's agree after your blood tests.  My GI truly thinks it is much better for you than being on and off pred your whole life.
Posted 5/4/2010 5:01 PM (GMT 0)

Debbiejg said...
Oh and my diet, Living with this for 20 years....... I've done gluten free, wheat free and tried cutting back on all the food vices. I've been on complete bowel rest for 6 weeks now and have just in the past 3 weeks been lactose free.......so you'd think there is very little to get through???????Which is why the not healing is worrying me more than usual...... Debbie

Yeah I been there. Tried most every diet with minimal results. But getting truly scared about how things were going downhill made me try...one...more...time. And it worked this last time.

No single diet did it for me and perhaps it won't for you. First I went totally gluten-free (my DH started it by showing me article stating that many UC'ers were gluten-intolerant which didn't show up on tests). I had been tested and gotten negative results, meaning I was not gluten-sensitive.

Anyway I had nothing to lose by going gluten-free again to check it out and surprisingly my bleeding stopped in 3 days which had never happened before unless I was on steroids.
After that success I decided to try the Specific Carbohydrate Diet again. This time I really kept track of food and even though something was "legal" on SCD I took it out if it upset my digestive system at all.
I found that I was also intolerant to fruit, fruit juices and most dairy. Fruit and juices are legal on SCD and they allow homemade yogurt. All of which were not good for me.

Part Two of my diet mod. was not as dramatic as Part One (gluten-free) but after 4 months I can truthfully say I am 95% back to pre-UC normal when I keep to the diet. Of course I cheat occasionally with chocolate. Life requires some treats :-)
I also wholeheartedly endorse the probiotic VSL#3 which I added in month#3 (co-incidence). No gas for me but others have had this effect.
Also I "juice" lol with cabbage, parsley, carrot. No fruit. Again no gas and a happy tummy.

Sorry for the long post and I don't mean to say "YOU MUST DO AS I DO" at all.
Just saying that I tried every diet also...and failed miserably.
But I also failed with RX and no doctor ever said "Well RX isn't helping so quit medications". Nope, they just keep giving me different stuff with a lot more side effects than wished for.

Best wishes for your recovery and remission.
Posted 5/4/2010 5:31 PM (GMT 0)

imagardener2 said...
First you should see a doctor.

Second, if your blood is red and not dark ask for rectal meds like mesalamine or Rowasa enema (I didn't see that you took these). If the blood is darker or stools very dark the blood is coming from higher up and needs professional attention. Enemas work for lower bleeding.

Third, consider diet modification along with meds. Everyone seems very different in this area but I stopped bleeding after 10 years when I went gluten-free.

Don't let docs tell you bleeding is OK, it isn't. It's a sign of ulcerations and your colon won't heal until the ulcers stop bleeding.

Best wishes. Good luck.

My blood is not bright right now. IT is more burgundy and the stools are darker but my skinny stools tell m sometthing is going on lower..what do you think?

Posted 5/4/2010 5:45 PM (GMT 0)
Krissy
Darker stools/blood generally come from higher up in the colon. I haven't followed your status so don't know when you had a colonoscopy done last. If this (the kind of blood) is a CHANGE in your symptoms it would call for a scope.
I avoid them as long as I'm doing well but we must always be aware that colon cancer is a possibility and not think it's "just my UC".
One of my friends had a couple feet of colon remove last year due to cancer. Thankfully she's had a complete recovery and back to work, etc. She never had UC.
Yours could be from polyps.

Best wishes also.

P.S. Wanted to add that in the past 4 months as my colon has healed my stools have gotten fatter, less skinny. Of course the more fiber I eat (which I monitor to avoid C) the bigger they get. I think "skinny" is a function of hurt colon.
Posted 5/4/2010 7:22 PM (GMT 0)
Imagardener2- thank you for your reply.
My status is that I I flared from feb 2008 to recently. I was on humira for most of that timeframe and also had several courses of steroids in between. Things started to really settle down in March and I would say I was as close to remission as I had every been in a long time going 1-2 times a day no blood.
Then on April 14 I had a flex sig scope. After that, downhill I went. During my scope the GI found things to be OK..he said rectum looked clear and that is probably due to me using enemas every night since March.He said on a scale of 1 to 10 where ten is the worst, I was a 2 and that was being hard nosed. He said UC was not active and I was in remission. He noted a pseudopolyp as well but said it had nothing to do with cancer or anything like that, it was due to past inflammation. He did NOT remove it. I dont know why and have been trying to reach him since with no luck to tell him what has happened since the scope.
I have had some bleeding since the scope and now number of bms has gone up to 3 a day and bms are very thin and small in qty which means i go more times to get a normal full bm out of my system.
Right now I am taking 9 salofalk pills a day and enemas nightly.
Posted 5/4/2010 7:40 PM (GMT 0)
Krissy
sure sounds like the scope caused bleeding since you were near remission before that and your doc confirms how good your colon looked.
didn't someone else this forum have something similar happen?
that is really a bummer.
but you had gotten to remission before so you should be able to get back there.

best wishes.
Posted 5/4/2010 7:56 PM (GMT 0)
I did get remission before but humira and steroids helped me along..I am trying to stay as far as possible from the biologics and oral forms of steroids. if this starts to get outta control I w ill probably attempt the steroid foams or enemas and give that a fair try before anything else.
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