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Banging my head against a brick wall

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Ulcerative Colitis
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Posted 8/15/2008 9:55 AM (GMT 0)
Been on pred since April & started Azathioprine then too. Reduced pred to 5mg started to flare told to go back to 10mg for 4 weeks and felt great went in for colonoscopy. My doctor said by bowel was clear and to reduce to 5mg 2 weeks then 2.5mg two weeks. Started flaring at 2.5mg, phoned hospital and was told I must be steroid dependant and booked an appt with specialist nurse yesterday.

I told her I didn't think aza was working (through tears) told her I had had enough and that I didn't think surgery was too far off so could I not just have it just now. She told me my bowel too healthy for that colonoscopy showed inflammation in rectum only (no 1 lie by dr who had previously told me everything was fine). She went and spoke to dr who said he did think aza was working and to introduce enemas as it was the rectum that was inflammed. I know the inflammation has progressed since then (i have pan colitis, only found that out yesterday too as I seen it written on my blood form) although another nurse always writes chrons disease on the blood form!!!!

Basically I feel that I am banging my head off a brick wall. When I went for scope and my rectum was inflammed I was having one good BM per day. Now I am having about 5 very loose BM's with pain and urgency but they are treating me for how the colonscopy results were when I felt fine then so I must be worse now. Honestly I think that they think I am a nutter and it is all in my head.

So now I have to use the enemas (which have never brought me out of a flare in the past, I have used them for 3 months straight before) and probably by next week I will be an invalid. back to being a recluse staying by my bathroom, unable to look after my kids and diving deeper into the black hole that I have already entered.

And to top it all off the nurse called me to say I could not get the supply of enemas until the middle of next week as I had to wait until their letter had been sent to my family doctor and then they would write me the script. Shows how urgent they think my situation is!!!

Posted 8/15/2008 11:10 AM (GMT 0)
Hi Tums,are you USA based?I wish this site would put a flag or something next to our user names!However,it's a great site,so Mods please don't take offence!If you are,I assume(live/born UK,so excuse any ignorance)that you can switch care providers pretty quickly?I would do so,as the whole "Rectum only,not severe enough for surgery" thing,is BS!

I was dx in 1995,and to be honest,the worst times were back then.The dx was Proctitis,inflammation limited to the Rectum.I'm not going to belittle my current situation though,I'm self debating surgery myself.However,I know how bad those days were,and you definitely need some form of resolution.

Have you tried Suppositories?They don't get very high up,but are fantastic for Distal Disease(low down).There are Steroid and 5-ASA based forms of these,and the Steroid's aren't very Systemic,so you can use them long term,at reasonably high doses(laymans terms,not too many/severe side effects!).

Failing that,maybe you could try Remicade,but your current "care" provider needs to change,as it's obvious this one wouldn't be open to that.
Posted 8/15/2008 1:33 PM (GMT 0)
You are not alone. My UC was limited to the last few cms of my rectum and I could not gain remission. With 22 plus pills per day and the enemas nothing worked. My colon was fine. I opted for surgery. You can have surgery if you are tired of your quality of life. I do hope you gain remission but if not don't assume that you can't puruse alternatives.

Sue
Posted 8/15/2008 1:41 PM (GMT 0)

Silent Lucidity said...
Hi Tums,are you USA based?I wish this site would put a flag or something next to our user names!

Actually, that's a great idea, SL. I don't know that the administrator is able to do that, but maybe we should all put our country in our signatures? It really does make a difference in the recommendations we can give people. For some of us, "try another GI" is sound advice; for others it may not be an option.
Posted 8/15/2008 4:18 PM (GMT 0)

I am in the UK and therefore cannot change my doctor (not that I know of anyway).

Maybe my original post was not clear but what I meant to say is that although the inflammation only showed in my recturm at my scope (5 weeks ago) I am much worse now and can only assume that the inflammation has progressed through part of the colon. Could be wrong but I have pan colitis and thought this meant the whole of your colon is affected, again I could be wrong as nobody has actually told me what pan colitis is.

Posted 8/15/2008 9:11 PM (GMT 0)
Geez, what a horrible doctor you have. You really can't change doctors in the UK? And not being able to get the enemas for a week because they have to send a letter....? Can't they use a fax machine or a phone?!

Anyways, your inflammation may have spread or it might not have -- you can have really really bad inflammation only in the rectum and it can be just as debilitating as pan colitis (complete inflammation throughout entire colon). It seems as if your doctor is giving the opinion that since the scope showed only inflammation in one area that it's not a big deal -- that's nonsense.

Try laying on your back, relaxing your stomach, and poking your belly in different areas. If it's really sensitive in certain parts, you're probably inflamed there. For me, my lower left side is almost always painful when my doctor or I press it. When I'm flaring I can pretty much track the progression of how far up the inflammation reaches (and receeds after it peaks) by my poking and prodding.

In any case, whether you have pan or left side colitis, your treatments will be pretty much the same. What kind of enemas are you getting? Cort enemas worked for me really well the first time i tried them last flare.
Posted 8/15/2008 10:25 PM (GMT 0)
Yes I agree that the doctor does not sound good at all and if there is any way possible to change I really think you should. If you just had a scope and it was only rectal inflammation then it is not pancolitis. But there seems to be a lot of mis-communication between you and the doctor and you need to find out what is really going on. Now I am not trying to be negative but I want you to know I have had only rectal UC (Proctitis) for at least 4 years out of my 12 years of UC and I personally have been more ill with only Proctitis than I was when I had left-sided UC. The med that has worked best for me was Remicade. I am sorry to hear your struggle with the Pred taper, I know how frustrating it is not being able to taper. Take care.
Posted 8/15/2008 10:54 PM (GMT 0)
Sushik, remember a discussion a while back about how to maneuver a change of specialists within your health system. You may want to start a post with a descriptive titlel (something like "Fellow Brits - question about NHS care") to see if some of our other members from the UK can help.
Posted 8/16/2008 1:58 AM (GMT 0)
I was initially diagnosed 2 years ago with pancolitis. This flare however seems to be limited to the rectum. It still sucks. I have tons of urges, but only a few that actually produce anything. When I do poop, it's formed and I'm not having pain anywhere else (like I did the first time 2 years ago) so the GI is pretty sure it's just the rectum.

I was using Canasa and 6 asacol per day (2x3). Then I went to 9 asacol (3x3) and cortifoam. That didn't do too much for 2 weeks. I got sick and tired of being sick and tired so I told the doctor I want to do prednisone for a few weeks. It's day 2 and I already feel better.

This isn't a negotiation. This is your body. Is there any national or local agency you can call or some other way you can change doctors? I think Judy has a wonderful idea regarding a post specifically for British folks for getting some help with the system.
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