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Ulcerative Colitis
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Posted 9/7/2009 3:25 PM (GMT 0)
Just need a little advice/opinions...

I had my hospital appointment 5 weeks ago and the consultant at the time told me if the Azathioprine hadn't kicked in by the time I had my next appointment (today) then we would be discussing surgery next time I came because there are no other options left.

I went back today and surprise surprise he wasn't in clinic today so I didn't see him like he said. Instead I saw the IBD nurse (who is fantastic and very knowledgable, but obviously doesn't have as much say or knowledge in the situation as he does). She said that they would have to bring the case before the gastro team at their next board meeting and discuss it, and then I'd be referred to a surgeon.

The problem I have is that my blood results keep coming back ok, so she said that the surgeons may look at that and say because I'm 'well' according to the necessary tests they may decline any type of surgery.

My Proctitis originally covered about 10cm, and since my last colonoscopy in hospital in Feb is only about 3cm, but the whole ordeal over the past 2 years has taken its toll, I'm unable to work full time, just recently started passing blood and mucus again, getting considerable amounts of pain etc. They just cannot seem to shift this last bit of inflammation.

The nurse said they will need to differenciate between symptoms caused by my dodgy bowel as a result of it not working properly for 2 years, and symptoms directly caused by the inflammation. And they will do another sigmoidoscopy (preferably by a surgeon) to determine the extent of the Proctitis now.

I just feel like this is '1 step forward, 2 steps back' and that that I'm gonna end up with no surgery and a constant flare up. Its affected so much of my life and work that I just feel a bit in despair at the whole thing.

Posted 9/7/2009 3:37 PM (GMT 0)
Ah, qwerty, I'm sorry you're going through this. In the US your next step would be Remicade or Humira, but I know that isn't an option for you. I really don't know what to say that will help, but will be thinking of you and hoping you get the treatment you need.

Hopefully some of our other members in the UK will have some suggestions for you.
Posted 9/7/2009 9:09 PM (GMT 0)
Yer it seems in the UK Imuran/Azathioprine is often one of the last things they try. Thankyou for your reply though :-)
Posted 9/7/2009 9:44 PM (GMT 0)
     Just wondering, why they don't offer Remicade in the UK?  It isn't an option for me anyway as I was exposed to the TB virus back in the 60's and test positive for TB on the skin patch test, but negative chest xray.  The doctor said Remicade could activate the TB virus, which lies dormant in my system, and it could kill me.  Is Azathioprine the same as 6MP?

     I have had ulcerative proctitis for eleven years so I can sympathize with you.  It is very nasty and hard to treat.  I am finally in remission after suffering with a three and a half month flare.  Ironic that I have an appointment with a GI who is supposed to be a top knotch guy here in the US.  My scheduled appointment, after waiting two and a half months, is over at the Univ of Pa Hospital in Philadelphia with a Dr. Liechenstein.  My GI said he has exhausted all his ideas of treatment for me.  He's been pushing Remicade for two years but even his associate said..."no way".  I  have been seeing a chiropractor for the last month and don't know whether his treatment has anything to do with my finally reaching remission or not.  He certainly doesn't claim to "cure" IBD but he did explain to me how he works on the part of my spine where the nerve endings affect the GI tract.  He also does some acupuncture and laser treatments as I have osteoporosis (thank you prednisone) and don't like my bones being "cracked".

     Good luck to you.  I hope you feel better soon.  Have you tried Cort enemas?  They seem to help a lot.

Posted 9/7/2009 11:06 PM (GMT 0)
From what I read, the National Health Service determined that Remicade didn't help UC enough to be worth the cost. Which may mean they simply weren't able to bear the high cost. For some time, people were being given one or two doses to try to get them in remission, but I don't believe it was ever available there for maintenance, Christine.
Posted 10/18/2009 6:56 PM (GMT 0)
Hi Qwerty.

Sorry to hear that your going through such an awful time. It sounds very similar to myself. I was diagnosed with originally proctitis in 2004, and a quick course of pentas cleared it up. All was fine until March/April this year, when my symptoms came back, but ten times worse, and was diagnosed with UC. Not going to go into detail, as you probably know what i was going through. I was prescribed Prednisolone at first, but the symptoms became worse, and I was admitted to hospital,eventually spending 9 weeks in total in hospital (3x3 weeks), each time having a course of IV Hydrocortisone, the last course in August. The IV hydrocortisone works, but when i stop, it flares back up, and Prednisolone just doesnt work. The consultant told me I couldnt have anymore Iv Hydrocortisone due to the damage it can do, and prescribed me Azathiprine. He told me that if it doesnt work I will need surgery, probably an a parks pouch procedure. Basically, i felt like my world was caving in, in and out of hospital, couldnt work, couldnt do anything really. I have improved, but I dont know if its the Aza, or if I'm just having a good spell, as it apparantley takes 3 - 5 months to work! The las 6 mths or so have been the worst of my life, so i know exactly how you felt at the time you posted this thread. Anyway, I hope your feeling better, good luck!

Stephen

Proctitis 2004 (Pentasa)

UC 2009 Prednisolone and Pentasa.

Now on Aza as a last resort, surgery if it fails.
Posted 10/18/2009 8:33 PM (GMT 0)
qwerty1, I was in a similar position as you last year.

Azathioprine wasn't working me (I had been on it for a year or so) and my GI doctor in the UK made me speak with a surgeon as they strongly recommended surgery. However, I decided to try some alternative treatments and changed my diet and things got back on track.

Here's a few things that worked for me, just in case you want to give it a try:

Vitamin E enemas 2x a day
Juicing spinach every day
Starting VSL3 probiotics again -- after I had stopped taking them for a while
Metmucil/psyllium husk powder with every meal

After doing the Vitamin enemas for a few weeks, I then alternated between Vitamin E enemas and Asacol enemas and suppositories for another couple of weeks.

My concern with surgery is that I have read a lot about people having complications after surgery so I would rather try as many other options before having to resort to that.

Also, something I would consider (and want to try as soon as I get a suitable donor) is a fecal transplant.

Hope you're fine soon.
Posted 10/18/2009 8:45 PM (GMT 0)
Hi Rio, hope u dont mind me asking, but what is that surgery, ive never heard of that?

Stephen
Posted 10/18/2009 9:29 PM (GMT 0)
I don't have any suggestions, qwerty, but I hope you get relief, so way or another!
Posted 10/18/2009 9:57 PM (GMT 0)
Stephen76...the surgery discussed was a proctocolectomy -- surgical removal of the colon and rectum.
Posted 10/18/2009 10:18 PM (GMT 0)

Now I may start to sound like "quincy".  Have you tried pushing the rectal meds - trying them all for a period of time. 

When I went to a specialist because nothing was working - including anything mesalamine - he took me off prednisone and 6MP and prescribed Cortifoam rectal enemas (I don't know what you have available but these are steroid foam and easy to use) plus Anusol suppositories THREE times a day.  He said to keep the area medicated.  Well, I never did get to more than twice a day but something helped before I had to stop because of a reaction probably to inactive ingredients.  That small area in the rectum seems to be the hardest to heal!

ElaineNY

Posted 10/24/2009 2:07 PM (GMT 0)
Sorry Rio, i meant the fecal transplant bit?
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