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Ulcerative Colitis
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Posted 9/18/2007 3:15 PM (GMT 0)

Hello.... I am a 30 year old female and I was diagnosed with Ulcerative Pancolitis after Colonoscopy and upper Endoscopy 3 Months ago and was given Asacol 6x day. A month later, I had a severe flare and my medication was changed to: 8g Pentasa granules, Colifoam and Asacol enemas, 40mg Omeprazole and 40mg Prednisolone daily.  Over the past four weeks I have been reducing the pred and am now down to 25mg today, with symptoms not increasing and feel better than I have done in a couple of years and only 1/2 trips to the bathroom a day (was up to 15 a day). I saw my Gastro today in London, who said reduce pred to 17.5mg and Pentasa to 4g a day.  As I was leaving the room, out of the blue it was announced that I will be needing surgery at some point and to go back in a month (he didn't examine me today either which is unusual).  I just wondered if in other peoples experience that maybe all medications should be exhausted first and if the pred has worked then doesn't it show that it is possible to treat it? Also being so newly diagnosed and having only had one flare that did respond well to treatment. Should I see another doctor?

Any advice appreciated. thanks.

Posted 9/18/2007 3:26 PM (GMT 0)
Kat,

I'm sure some of the regulars will chime in here with more detailed responses. As far as the stats go surgery is only required in 25-30% of UC cases split evenly between people needing surgery due to cancer concerns and people wanting surgery cause they are fed up of UC and have quality of life issues.

When surgery is required then 90% of the time the person has had UC for more than ten years.

Your GI's response is a bit strange. Mine said something similar (i'm in ireland) also in an out of the blue fashion. I just get the feeling that GIs just come out with these things as part of the "converyor belt" treatment that a lot of us seem to get from the meidcal profession.
Posted 9/18/2007 4:48 PM (GMT 0)
Hi and welcome to Healingwell :) For your doctor to make such a statement about surgery so quickly is not right. Many doctors WILL try to exhaust the medicinal route first before recommending such a drastic step. Unless you are totally nonresponsive at all to any of the meds, but 3 months is really not that long of time to be on meds. And if your bathroom trips have already decreased then I would say that something is working for you. Yes there may come a point in your life where you will require surgery but if you're not ready for it and your body is responding well to medications then you don't have to take that leap if you don't want to. It's your body, your life. If your doc pushes you for surgery, can you go and get a second opinion? I'm not sure how the medical community works in London.

Right now you on the typical maintenance and treatment medications but if you become more severe there are other meds that are available (at least I THINK they're available there). They are Mercaptopurine (6mp) or Imuran in addition to Remicade. These meds are considered the heavy guns of Uc treatment because they suppress the entire immune system.
Posted 9/18/2007 11:22 PM (GMT 0)
It doesn't make any sense to take out your colon!?!

 

Do you need surgery for something else, your hiatal hernia maybe? 

Posted 9/19/2007 7:57 AM (GMT 0)

Hi Katina

 

He just said to me as I was half way out of the door that I would need surgery.  I was completely shocked so said what for and he said to remove part of your bowel. 

 

I don't know if maybe he saw something in other investigations that he thinks he has told me about.  Maybe he's just not a very good communicator and meant that was a strong likelihood that I would need surgery at some point. 

 

I am looking around for another Consultant anyway for a second opinion as I luckily did respond well and fairly quickly to the steroid treatment. Although I keep being told by my family that as soon as I feel better I forget how ill I have been, there are lots of people with this disease in a far worse position than me that so far seem to have avoided surgery.

 

Thank you all for taking the time to reply.

xxxxxx

Posted 9/20/2007 9:30 PM (GMT 0)
Get a new doctor! ugh, I can't believe how many doctors out there are so irresponsible!! There's no evidence you need surgery. I'm also concerned he's prescribed Omeprazole. That's one of the autoimmune supressant, right? I discourage women who might want to have kids from going on this autoimmune supressants. Your doc should let the Prednisone and Asacol get things under control. you should also add rectal meds to the mix. The "bigger" drugs (the ones with more side-effects) should be used only after the first line drugs (ones with little side effects) have been used to their fullest extent. One of my prior GI's prescribed imuran (auto immune suppresant) and I took it for about a week and then told him I stopped. Since then I have a better doc and have found that Asacol and Rowasa and the Specific Carbohydrate Diet are keeping me on track.

Good luck....Get a new doctor!
Posted 9/21/2007 12:41 AM (GMT 0)
Omeprazole is Prilosec for acid reflux.
Posted 9/21/2007 4:14 AM (GMT 0)
There are some other options your GI should be exploring before even mentioning surgery unless of course your colon is basically hamburger at this time, that would make it very difficult for it to recover, but Remicade and I think even Humira are now being used for UC.

:)
Posted 9/21/2007 9:10 AM (GMT 0)

Thank you

Just out of curiousity, in other people's opinion, if my colon was very badly damaged and part (if not all)  of it needed to be removed (maybe after my colonoscopy two months ago the consultant should have mentioned the possibility of this, as that would have been when he would have seen how bad the damage was), would I have responded so quickly to the steroid treatment? Surely it wouldn't have given such a reduction in symptoms would it? The blood and mucous has stopped and bathroom trips are a max. of 2 a day, usually first thing in the morning with a bit of cramping and pain.  I am down to 20mg of pred and halfed my doseage of Pentasa granules to 4g a day.

Thanks again!!!

xx

Posted 9/21/2007 10:57 AM (GMT 0)
Surgery to remove a portion of the colon doesn't make much sense to me because if you leave a part of the healthy colon then the disease then has the opportunity of attacking that too. I don't even think they do partial surgeries anymore. But yes, pred can act that quickly to heal the colon. Some people that are flaring severely can notice a marked improvement 2 days after starting pred.
Posted 9/24/2007 2:40 AM (GMT 0)

I was under the impression that prednisone doesn't "heal" you, it just makes the symptoms go away.  That's why you take it in conjunction with other meds and then taper when the meds are supposed to kick in.

Anyway, I would push back on your doctor about surgery -- there are some medications out there that you haven't tried such as Colazol, Lialda and Remicade.  I'm on entocort, which I like much better than prednisone although both are steroids.  If he still insists, get a 2nd and even 3rd opinion.  Some doctors are more pro-surgery than others, and I would only go that route if YOU are the one that says "take it out!"

Posted 9/24/2007 1:58 PM (GMT 0)
In order for the symptoms to go away, the colon needs to "heal". Steroids decreases the inflammation in the colon, allowing it to heal. Also by taking daily medications, it keeps the inflammation at bay allowing the colon to function properly.
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