When I still had my colon, I was never able to take any form of mesalazine. When I was first prescribed it, my colitis went from being in 10cm of my colon to total colitis within a matter of weeks, I had dreadful abdo pain,diarrhoea and even some vomiting from first taking it, and as my specialist insist I 'give it a good go' I had 2 gruesome weeks of these symptoms.

Each time of have seen a new doctor on rotation when I still had my colon, they would insist I try a version of this drug, disbelieving my reaction. I was even admitted once and given the drug in a foam enema form, just so they could witness it for themselves-very frustrating when the info on the drug, even back then in the 90's, said that some people have this reaction.Of course they saw the reaction then, and it is documented in my notes.

I now have cuffitis, confirmed by a scope on saturday. I have yet another new doctor, who wants me to try Pentasa suppositories, even after I expressed my concern. His attitude is I no longer have a colon, so can't react, plus he has said the opposite to what I have read on here- he said that Pentasa concentrates only on the very end of the bowel not the small bowel, whereas everything I have read says the opposite! His attitude was take it or leave it- try Pentasa first, and if that fails I can try some sort of steroid suppository, but I have to try it first.

I know no-one can predict my reaction but I don't know whether anyone has any similar experience? I am a single mum with a child with special needs, and I really can't afford to be as ill now, as I was the last time I tried a mesalazine drug. At the same time, my cuffitis symptoms are pretty miserable. It would be great if anyone could add their thoughts, or even if Jan Dollar was a round to comment? Thank you!

I think you have a well documented adverse reaction to mesalamine. It does not matter that you had a colectomy, particularly since you retained the rectal cuff, which is now in need of treatment. While an adverse reaction is not the same as an allergy, it is certainly a reason to avoid the drug. Hypersensitivity to mesalamine is definitely a contraindication to it.

Not sure how the NHS works, but if it were me, I would refuse the treatment and ask for either a second opinion by a physician "higher up the ladder" or appeal to the NHS for assistance. NOBODY should be forced to undergo any treatment, especially when you know you cannot tolerate it. In this case, it actually worsens your disease. You'd think this would be a no-brainer, and just skip forward to the hydrocortisone suppositories, with similar efficacy.

This obviously seems like doctors too overwhelmed/overworked to actually listen to their patients, and just "going by the book" for treatment protocols. The stupid thing is that hydrocortisone is actually cheaper, and will save the NHS money in the long run, both in medication costs, and in office visit time.

Jan

I was just diagnosed with cuffitis and I am on hydrocortisone suppositories so there is an alternative. I know they typically like to start with canasa suppositories (or something similar to what you are being prescribed, but they did not seem to work in my case. If you are really concerned about your possible side effects, ask the doctor about the hydrodcortisone foam or suppositories (I am on anucort). Just note that the side effects may not be the best on these and I know my surgeon does not like to do these for a long period of time due to the fact it thins the tissues.

OK, so your doc is correct about where the Pentasa suppository will concentrate. Suppositories always concentrate the medication locally. It is the oral Pentasa that distributes throughout the GI tract. However, that is not the point. The point is that you have demonstrated on several occations that you have an intolerance to mesalamine. While that is rare (like 3%), it is not something that goes away. Using this drug knowing you have the reaction, could cause worse responses, as allergies tend to get more severe with repeated exposures. This Acute intolerance syndrome has even been associated with heart inflammation (pericarditis), so I definitely would not risk it.

Here is a link to some detailed information regarding the contraindication. Perhaps it will help you convince your doctor:
Mesalamine suppositories prescribing information

Jan

Thank you so much Jan. You have reassured me that I must not take this drug! He did say that he would write to my GP and tell him that he can prescribe the steroid suppository if the Pentasa doesn't work, however that is likely to take over a month, knowing the snail pace of the NHS!

I am going to contact the specialist nurse there tomorrow, to explain to her what has happened. She is very much like you, Jan-very knowledgeable, not afraid to say the doctors are wrong, and hopefully she can speed up the letter to my GP!

The other thing I was wondering-he said I would only need a 7 day course of the steroid suppositories to treat this, whereas everything I have written states it can take up to 3 weeks to clear, and many people need to take them on and off indefinitely?

Sorry I've just noticed I keep miss-spelling this drug!

Unfortunately it wouldn't allow me to see that information Jan-a pity as I would have shown it to my DR. The really annoying thing is that the Sen Reg I saw first wanted to prescribe the hydrocort, but it was the specialist who said no, I would have to try Pentasa first. One problem I find here is that the pouch management is by the surgeons, who really don't seem to have the experience of after care that I think the medics would build up. I will contact the nurse, in the first instance, maybe also try to fnd out the Specialist's secretary's email address so I can email direct. I want to get this treated and am so frustrated, as they refused to schedule the scope and follow up for the same day, it takes me a whole day to get to this hospital and back and it costs me a fortune in childcare-twice. I am supposed to be doing a return to practice Nursing/Health Visiting course starting the end of Feb and my next appointment isn't until the 20th Feb-so very frustrating!

See if you can open this one:

Salofak

Jan

Thanks Jan that was interesting!


Thought I would update this although things are still unresolved.

The specialist nurse initially rang me back, saying she would get the DR to prescribe the steroid suppositories. Then she rang back the next day to say that she disagrees with the 3 DRs who told me I have cuffitis, she doesn't think anything should be prescribed until my boipsies are back. So basically I am back in waiting mode.

I understand her logic, but I think she is brave to go and tell the female consultant I have that she was wrong to diagnose cuffitis from the scope photos ( I'm pretty scared of her myself) and of course, the wheels turn exceeding slow in the NHS, so I really can't see me getting treated before I start my back to practice course beg March, which I am pretty dissappointed about

I am supposed to be getting back to my community
nursing position after that, but can't miss a single day or I fail the course. So I have to stay well enough to get on the underground everyday and then walk to college and back. Sigh.