Left-sided colitis

Hi Melissa

I have also been told this.  I think there is an element of truth to it.  The main reason behind it is probably due to the standard 5ASA drugs, like asacol, not reaching the left (descending) colon.  Enemas can be a god send here but many people, including me, have a real problem retaining them.  And so left sided colitis can be notoriously difficult to treat.

My first flare was pan-UC, and I managed to get into a 2 year remission. But, the last 4 years  I have had left-sided UC flare and I cannot get into remission.

I actually read somewhere the majority of people who have their colons removed due to refractory UC, have left-sided disease.

Wow your posts were hard to read (emotionally) but I am glad that I heard what you had to say. I had no idea about this. but it explains why I have been having so many problems in the last couple years. Mine progressed from Ulcerative Proctitis to Left sided colitis. Does anyone know how that happens? Does it just happen or is it a lack of proper meds or both. Well if anyone out there has found out what has helped their left sided colitis get into remisssion please post as well. The colon removal that you posted about KSU really scares me. If that happened I could most likely get a J pouch right?




Thanks,
Melissa

See my earlier post, "New Online IBD Article Summarizes Current Medical Treatment Options". Part 1 discusses UC & has a chart differentiating 5-ASA meds. The docs who say meds "do not reach the left-side colon", etc. are kind of stupid. Everything that enters the colon has to exit by the same route! The truth is that different oral 5-ASAs begin to dissolve in different areas of the GI tract-- that can make a difference in their effect on the patient's particular inflammation site. I have done better taking Colazal than on any of the earlier oral 5-ASAs, or on Rowasa alone. My inflammation is usually in the sigmoid, but I have occasional inflammation in the descending colon, too. If Asacol doesn't do enough for you, Colazal or Lialda may be better-- worth a try, I think. Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

so, I have pancolitis and this conversation makes me wonder..... is pan colitis like having left-sided and then some? I always thought that pan colitis was the hardest to treat due to how extensive it is. are you guys saying left-sided is actually more difficult than pan?

Melissa - as for your original question, I wouldn't worry about surgery right now, as it appears, from your signature, that you haven;t even tried Imuran or 6-Mp yet, much less remicade. If you were to stay sick, you could always bump up to imuran. I was VERY scared of that drug after reading about it, but I have actually had no problems on it so far (knock wood) and would recommend it if you need to try something else. But I also echo the earlier post about maybe trying a different ASA. my GI has said that too, that different people have more/less success with different ASAs.

Old Hat, I happen to think that my GI is highly intelligent, kind and compassionate which is why I've been with him for over 10 years. To call any GI stupid that is just trying to simplify an explanation is uncalled for. I agree that there are some GI's that shouldn't be in practice but you shouldn't "assume" that a GI is stupid for trying to make their patient (who doesn't understand medicalnese) more aware of why certain meds treat certain areas.

Old Hat,

I diasagree with your assertion that "The docs who say meds "do not reach the left-side colon", etc. are kind of stupid". Even if you dont agree with that statement thats a terrible way of expressing your opinion. If i read that line as a complete newcomer to this site and to UC it would make me kinda nervous and anxious about the whole GI / Med process.

From what I've read Asacol doesnt start the dissolving process until the first few cms of the colon. At that point it has 100% efficiency. As it moves along the colon its efficiency drops. Sure it reaches all of the colon but it does not do so at 100% efficiency. According to my GI by the time it starts descending the left side of the colon its efficency is between 25%-40% depending on the metabolism of the person. By the time it gets to the rectum its efficency can be 0%. And that is the main reason why rectal medication is prescribed.

I agree with Red_34. I have lots of issues with my GI and at times I question a lot of what he says and the same with modern medicine. But I've yet to meet a GI or a GP that isn't a sharp intelleuct and well read in their area. I believe every GP and GI trys to helps us as best  as they can.

D

Damo, recommend that you have a look at online article with chart I cited. It states that Asacol begins dissolving in the terminal ileum. As for calling some doctors "kind of stupid", some of them are, and their staffs, too. Read some posts by Sara14 and other members who discuss this. These docs may be jolly good fellows with positive intentions, but they end up harming patients or retarding their progress toward better control of UC. I am interested in helping other UCers get the most up-to-date, medically accurate info. This is a continual learning process. I assume that everyone posting here has completed at least a secondary school education. Why the fright and recriminations when members occasionally vent at doctors? No one is naming names! This site is supposed to allow venting! "Stupid" is a common adjective, not a curse word. Peace, brothers and sisters. We are trying to share good solid info. / Old Hat

"Respect" is a fine principle, but this is a forum, not a place of worship. And, yes, we may come from different cultures. What's wrong with that? Not everyone has the patience to suffer fools gladly, and they may express their frustration in different terms. I do not go around yelling "This sucks!", etc., but if a younger person expresses him or herself that way, I still try to hear them out or read/reply to their post. If everybody looked, spoke, wrote, and behaved the same way, it would be a very boring world-- and a very boring Healingwell Forum. / Old Hat

The logic may say otherwise, but my GI says he and the 8 others in his practice experience more difficulty with getting left-sided UC-ers into remission, on the whole. He's not stupid and he's not a liar, so maybe their experience is atypical. I'm just telling you what he told me.

Mitzo - Interesting theory. I have no idea what the answer is, but interesting thought.

And, yes, I can attest that some (not all) GI docs are kind of stupid (and very frustrating!).

Ulcerative proctitis can be very stubborn. I know a UCer who spent 1 month in hospital being bombarded with IV steroids to subdue a severe flare there. This patient is now doing well on Colazal. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

I have left sided UC but tend to get fairly lengthy periods of remission. For me, the trick was getting the right amount and right mix of oral and rectal 5ASA meds - I seem to need both for maintenance but can bring myself out of most flares with extra 5ASA enemas so things are pretty good.

I have heard that left sided is the hardest to treat but I've been going pretty well with just the 5ASAs. For what it's worth, my Dr was really happy when we found out it was just left sided and not through the whole colon. He said then I could use rectal meds. I didn't quiz him any further on this but he did seem more worried when it thought it was pan-colitis.

Mitzo - I actually take my last dose of oral 5ASA just after a big glass of metamuscil (just before I go to bed). However, I've been doing this for years so can't really say if it helps. The Metamuscil really forms a gel that goes through your system so it does seem possible that it would sweep the Asacol further along than just a glass of water would. I could do some testing of this by moving the metamuscil so it is 2 hours away from any of my Asacol doses but things are going well at the moment so I don't want to risk that! Interesting idea though.