Terrified of starting enemas

I've got Salofalk enemas and suppositories, but I just can't face taking them, particularly the enemas - it seems like I get more of a coward as I get older, not less. It doesn't help that I had a severe intolerance reaction to oral mesalazine in the past. It also doesn't help that I learnt recently that enemas contain sulfites - my reaction to sulfasalazine made my reaction to mesalazine look like a frolic in the meadow by comparison.

Even if I didn't have a possible intolerance reaction to worry about, I just can't see holding liquid in a sorely inflamed rectal stump for longer than 10 seconds. Every time I've taken a Fleet Phosphate enema it's been an absolute nightmare.

I am beginning to come to the conclusion I can't do this. I don't think I can even start. My IBD team aren't the one who'll be lying on the floor, crying and/or groaning with pain all night long.

What about salofalk - foam enemas - they are much easier to use! C

Try just a little of the enema, as a test. You should be able to try 1/8 a bottle or something. I tend to think a small amount wouldn't be as bad as a lot would be.

Someone was on here a while back who lived in Egypt and they got a chemist (pharmacy) to make them mesalamine enemas without the sulfites, otherwise not available there. In the US we call these "compounding pharmacies" because they custom-make certain meds instead of getting them mass produced. Do you think this is possible in UK?

Here's the post that talks about it, poster's name is dreadsteel:

www.healingwell.com/community/default.aspx?f=38&m=3316581

The sulfasalazine is related to mesalazine/mesalamine because it's the sulfa part regarding the allergy, not the mesalazine.

mesasalazine and sulfa are NOT related.


q

yes, you can....but they are not medications. Just keep that in mind so that you don't hang on to a wrong concept.

It only makes sense to use the enemas at night and the supps during the day so you don't have the heavy liquid having to be retained while standing and functioning. Supps can still leak if you fart (and not feel it)...so be aware ;-)

I'm happy you took the jump to the supps. Next a leap for the enemas...woohoo!!!
q

Jeez guys, I think I had reaction to the supp after all ;_;

It began with a feeling of weakness and fatigue creeping up on me. Okay, maybe I just hadn't enough sleep. I ignored that part and kept on playing my game - these levels won't complete themselves. Then about an hour later I had an unbelievably strong urge to go; I only just held it in. Okay, I've had many excruciatingly strong urges before. This was just a slightly odd time of the day for me to have one, but whatever. I then went to the toilet and passed fresh blood.

As I'm the oddball who almost never has bleeding, this really was not something I could pass off as normal. Even if I pass blood, it's usually pinkish-red and not bright red, like this was. The second BM was non-bloody but pale. I'm sitting here now, still feeling a bit shaky. No fever (although I've suspected for a while my thermometer doesn't work properly).

I'm not encouraged to take the enemas now, I must say. I'll try one or two more suppositories but if I have the same reaction, I have to say I think rectal meds are a no-no for me.

I won't take it tomorrow, 'cos I'm going to an Italian restaurant for lunch for my mum's birthday. I don't think I want to risk a bad reaction in the middle of a restaurant.

In fact I have two other morning appointments this week. I suppose I'll try again Thursday. I'm not really optimistic, 'cos I know this wasn't a normal reaction. It's not nearly as bad as the one I had all those years ago with the pills, but it was still there. (Also, I presume I took 4g/day with the pills, whereas this was only 1g.)

imagardener2 said...
Someone was on here a while back who lived in Egypt and they got a chemist (pharmacy) to make them mesalamine enemas without the sulfites, otherwise not available there. In the US we call these "compounding pharmacies" because they custom-make certain meds instead of getting them mass produced. Do you think this is possible in UK?

That would be me, i think i should update the original thread as i am doing great on the compounded enemas thankfully specially after using Xanthan Gum as a dispersing agent which resulted in more even consistency and longer shelf life even without preservatives.

@NCOT i didn't have an allery to sulfite i resorted to compounding the enemas as they are not available in Egypt,i have a couple of tips for you.


- Anxiety can play a big role specially in triggering colon spams and gas production in the colon which some calls ibs, so calm down you've already been through hell, take it slow please.

-i have experienced what you just described with using the suppository and i am not alergic to either sulfa or mesalazine, i was very badly inflamed at least you retained it for an hour, if you could increase the time by only 30m daily, in only 3 days you'll be able to hold it long enough (4 hours) for the suppository to be totally absorbed.

-i presume you already know this, but try to avoid anything that would make you gassy before using it, also some use a water enema just to clear that area before applying a supp or a mesalazine enemas.

- try covering the hard supp with KY jel and also applying some KY jel on the anus, to avoid as much irritation as possible.

-distraction works wonders, try watching tv/netflix/book ..etc just to keep your mind off it

-you'd be surprised but i think the enemas will be better since they are softer being a liquid and less irritating than a solid supp, also they contain agents which make the medicine stick to mucosal walls, so even if you couldn't retain it for a long period you'll at least have some left and you can control how much you apply from the enema.

i am hopeful that what you're experiencing is just inflammation and not an allergic reaction, and it will get better once it calms down.

@Dreadsteel - I absorbed the suppository fully as far as I know. In fact I was suprised by how easy it was at first. Had no problems inserting the suppository or retaining it. Had about 3-4 hours before the symptoms started. Incidentally I inserted the suppository at a time of the day I knew my rectum would be cleared out, i.e. late morning (I don't eat breakfast).

There was zero irritation from the act of inserting the suppository itself. I'll give it one more try tomorrow, but if I get a similar reaction, that's it as far as I'm concerned. Mesalazine intolerance isn't one of those things which goes away if you keep on taking the med, but builds up and gets worse.

@Poppie - Yes, the reaction happened extremely quickly - same day quickly. The symptoms were like having a severe flare-up in the days before I had any clue what a serious flare-up was: watery diarrhoea, chills/fevers, nausea/vomiting. I was clueless in those days so I let my hospital piss about trying several brands of mesalazine over the next few years, something I bitterly regret now. I had the same reaction to all of them.

That's why I point blank refuse to spend a day longer on mesalazine than I have to this time around. Ideally I'd get on a new med before Christmas but think it will have to wait until January now.

Do you have a link, iPoop? Ideally I'd print it out, return to my first hospital, and make the entire IBD department read it in full. Twice.

@ipoop Very Big difference

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104151/ said...
At least 80% of patients intolerant of sulfasalazine are able to tolerate mesalamine preparations. These sulfa-free preparations have been used in doses of mesalamine up to 4.8 g daily for treatment of gastrointestinal inflammation, usually with excellent tolerance and with a frequency of adverse events no more common than with placebo.

according to my GI sulfasalazine was discontinued in Egypt due to numerous reports of unwanted side effects (which could include allergies) which are almost non existent with mesalazine/mesalamine.

@NCOT how about using a steroid suppository in conjunction or in alternating days with the mesalamine one ?