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Salofalk enemas and switching to Pentasa granules

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Ulcerative Colitis
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Posted 1/28/2023 12:00 AM (GMT -8)
After not doing enemas for a long time, I’m starting doing them again.

I lie on my left side, left leg straightened out, right leg bent and apply the enema with my right hand.

It’s very hard to squeeze the bottle indeed. Sometimes towards the end of it I try using my left hand as well but it gets into a really uncomfortable position that feels very inadvisable!

After doing the enema I had these spasms on the left side of my abdomen continually, felt like bowel spasms that came repeatedly. Is that normal??

I worry about not inserting the nozzle correctly and causing some damage to my rectum or something due to a bad angle or something like that, I’m sure that’s impossible but if anybody could reassure me please do!

If anybody has advice or tips on how to make this easier based on what I’ve said, please let me know.

Now for the bright side. My UC symptoms are bad. But I switched from 4g sulfasalazine to 4g Pentasa granules and I’m going to do the 2g Salofalk enemas nightly again. After a few weeks of this, fingers crossed I will start getting better. If not will probs have to see what stronger drugs are available.

Post Edited (~ chicken wings ~) : 1/28/2023 2:52:08 PM (GMT-8)

Posted 1/28/2023 12:33 AM (GMT -8)
They changed the salofalk bottles last year or so and yes they are stiffer and more difficult to squeeze and I hate it.

I often get spasms after inserting the enema, i just lie there until I fall asleep.

You can get 4g enemas, they are much more effective. 2g never did anything for me.
Posted 1/28/2023 12:53 AM (GMT -8)

poopydoop said...
They changed the salofalk bottles last year or so and yes they are stiffer and more difficult to squeeze and I hate it.

I often get spasms after inserting the enema, i just lie there until I fall asleep.

You can get 4g enemas, they are much more effective. 2g never did anything for me.

Thank you. I don’t know if they do 4g ones in UK. I could check. Are you in America?
Posted 1/28/2023 5:35 AM (GMT -8)
When you insert the nozzle point towards your naval for the proper angle. When I had problems squeezing the bottle instead of squeezing from behind I will reach between my legs from the front to get better leverage and even lay on my back to empty the bottle and then role to the side once it's empty.
Posted 1/28/2023 8:24 AM (GMT -8)

~ chicken wings said...

Thank you. I don’t know if they do 4g ones in UK. I could check. Are you in America?

No I'm in the EU. The salofalk i use is manufactured in Germany.
Posted 1/28/2023 8:31 AM (GMT -8)
That being said, you can also use 2x 2g enemas one after the other. I've done that when the 4g was out of stock.
Posted 1/28/2023 9:58 AM (GMT -8)
I use Salofalk 4g...my suggestion is to never go off them completely, but to taper (and I stress taper) to a maintenance of 2x weekly.

Are the bottles accordian style or smooth?

You could warm the bottle and see if that helps...ive never done it tho.
I have some that are quite difficult and others that are way easier than anticipated.

I do suggest you get the 4g if available...contact your pharmacy to see if they're available, and discuss a change in dosage with your GI.
Re doing more than one a day...your rx must make sure it matches the max amount of application, or they won't refill it.

q
Posted 1/28/2023 2:49 PM (GMT -8)

quincy said...
Are the bottles accordian style or smooth?

I do suggest you get the 4g if available...contact your pharmacy to see if they're available, and discuss a change in dosage with your GI.

Accordian style. I will ask about 4g enemas next time I speak to a doctor, just in case. I believe I asked once before and they didn't really do anything with it but I'll ask again. I do wonder if it could be just a difference in how they happen to do things in the UK but I'll ask.

Since switching from sulfasalazine 4g/day to Pentasa granules 4g/day, my symptoms are quite a lot worse sad I switched like 11 days ago. But I don't know if they would have become worse anyway. Even though I've switched from a drug that kinda contains mesalazine to another fully mesalazine drug, do you think I still need to wait like at least 2-4 weeks to see if the Pentasa's working? My symptoms are bad, I'm going many times a day with extremely high urgency. It's definitely worsened since the switch. But I switched due to factors beyond my control, there was a sulfasalazine shortage that I just couldn't get around and I tried. Nonetheless Pentasa should be good right? I used it when I was first diagnosed with UC and it worked well for me at the time. Surely the enemas should help too. I think my main question now is this one I posed:

Even though I've switched from a drug that kinda contains mesalazine to another fully mesalazine drug, do you think I still need to wait like at least 2-4 weeks to see if the Pentasa's working?

EDIT: And just to be clear, I was flaring before the switch too, it's not like I've suddenly started flaring. But the symptoms are just worse that's all.
Posted 1/28/2023 6:11 PM (GMT -8)
And thank you, I felt more comfortable doing the enema with the tips you all suggested smile
Posted 1/29/2023 12:04 AM (GMT -8)
You didn't start rectal meds till long after inflammation started. Remember where it starts, and oral mesalamine meds aren't going to deal with that area.
It will take a while before they kick in...but you should notice some incremental improvement after a week or two.

I still suggest you call the pharmacy and see if they can get them. Then discuss with your doc that you want to try them.
You can save the 2g for maintenance down the road.

Hang tough...please don't go off the enemas completely in the future.

Let us know how the enemas go.
q
Posted 1/29/2023 1:35 PM (GMT -8)

quincy said...
You didn't start rectal meds till long after inflammation started. Remember where it starts, and oral mesalamine meds aren't going to deal with that area.
It will take a while before they kick in...but you should notice some incremental improvement after a week or two.

I still suggest you call the pharmacy and see if they can get them. Then discuss with your doc that you want to try them.
You can save the 2g for maintenance down the road.

Hang tough...please don't go off the enemas completely in the future.

Let us know how the enemas go.
q

Yes, after these experiences, I think I'm learning my lessons! A few years ago, I even stopped drugs altogether for various reasons, but a part of me thought that as I had been in remission for years, maybe I didn't have UC any more! It was wishful ignorance XD I am beginning to think that after all this, maybe I won't stop enemas again. And yes, I will ask about 4g. But I think Pentasa 4g granules + 2g enema if I do that every single day, it's definitely a good combination. I am also starting taking probiotics, just one sachet of Vivomixx every day (apparently a very powerful probiotic) as I can't really afford to buy more, but hopefully it will do a tiny bit of help too. It seems conter-intuitive just being patient and hanging in there while you're rushing to the bathroom multiple times every day and not feeling great, but for the next few weeks unless things get worse I think that's what I need to do to give these drugs I just added in some time to work.
Posted 1/29/2023 5:26 PM (GMT -8)
I went on the salofalk UK website and they do mention 4g enemas so they should exist... and if they don't you can ask your doc if you can take 2 x 2g in a day. I've been using 4.8g oral mesalazine plus 4g enemas for years...
Posted 1/29/2023 5:29 PM (GMT -8)
Ps I am also a vivomixx/vsl3 fan. I just used it at double dose to get through a bout of food poisoning and it seemed to help.
Posted 1/29/2023 10:10 PM (GMT -8)
The enemas are still annoying, when I do them it’s like my hands shaking and it’s really hard to squeeze even a tiny bit in.Can you do local damage to that kinda area of the body if you do the enema wrong or can that not happen?
Posted 1/30/2023 10:38 AM (GMT -8)
CW...make sure the enema nozzle is somewhat pointed toward the front rather than the back. Use a lubricant on the tip.

Re going off meds...all my last 3 scopes show all as normal. Cellular architecture that was changed from inflammation has gone back to normal. Gi says...if I went now to another GI, it's possible that I would be encouraged to go off meds, which I would never. I cannot stress enough for the 5ASA (oral / rectal) meds to be a lifetime maintenance. I do worry that someday I might not have access to them considering the state of the world today.
BTW...I still flare, but not to the point of severe as in the past, and I never wait for worse symptoms (as per some sort of guideline) and increase enemas nightly immediately till I feel its time to taper back to maintenance.

q
Posted 1/30/2023 10:46 AM (GMT -8)
Quincy, I'm sure you've mentioned this before but how often do you take the enemas when you are in remission?
Posted 1/30/2023 7:26 PM (GMT -8)
Instead of making new threads, I'll use this one to ask a general UC question - I've never had this symptom before, but I'm having repeated left side of my belly spasms or like flutters. It almost feels like the bowel is like shuddering and it's happen quite frequently for the past few days. I assume it's my colon although in theory of course it could be something else. And it's like a fluttering or spasm that lasts for a second or two then goes away for a few more seconds, then come back for a second or two. Or sometimes its longer between the gaps, like minutes or possibly even hours ( I haven't really noticed). Is this a completely common and normal UC symptom you recognise, or not? I'm just wondering because I've never had it before.

EDIT: I should add it's painless but feels weird. And is very frequent now

Post Edited (~ chicken wings ~) : 1/30/2023 8:08:11 PM (GMT-8)

Posted 1/30/2023 7:36 PM (GMT -8)

quincy said...
CW...make sure the enema nozzle is somewhat pointed toward the front rather than the back. Use a lubricant on the tip.

The front or back of what?

quincy said...
Gi says...if I went now to another GI, it's possible that I would be encouraged to go off meds, which I would never. I cannot stress enough for the 5ASA (oral / rectal) meds to be a lifetime maintenance.

Yeah, going off meds although there were other reasons (like a kind of medicine phobia) was extremely ill advised of me, and something i will NEVER do again. But just like being slow to get onto the enemas, sometimes you need to make the mistakes in your own life before you learn them. I think enemas will definitely be a bigger part of my life from now on even if I get into a remission again - no, when I get into a remission again ;-) positive thinking! And that's good that you will keep on with the maintenance medicines no matter what including the enemas.
Posted 1/30/2023 11:28 PM (GMT -8)
CW...I've been at this for 34 years, but I did go off the enemas once in the first year...waited too long to see my doctor because of wishful thinking, aka denial...lol. I learned...but it took many many years to understand symptoms (through asking my GI).

Your symptoms sound like spasming and/or increased peristalsis caused by flaring. However, it doesn't mean the area spasming is only where there is inflammation, because the entire colon works by communicating signals according to severity and location of inflammation. Plus...eating causes increased peristalsis, and with that, some foods can make them worse depending on if ithey are generally more gas producing.

Point the nozzle slightly toward your front instead of toward your back. I have an internal hemorrhoid caused by constant bumping of the enema. I try to insert it more slowly than as quickly as I tend to do.

Serenity...enema maintenance is every 3rd night.

q
Posted 1/31/2023 6:14 AM (GMT -8)
Thanks Q.
Posted 2/1/2023 4:53 AM (GMT -8)
Last night's enema has been in 9 hours 20 min so far smile I'm happy about that, it's the longest I've kept it in in the five days I've done them this week. I like to take a note so I can keep track. I'm just going to keep at this, granules, enema, probiotic sachet every day for the next like four weeks completely consistently and as long as things don't deteriorate I'll see how I'm doing then. Fingers crossed I'll get better and that the mesalazine will be enough on its own, if not then I guess we can see if there's something stronger to add in that would work for me smile
Posted 2/1/2023 10:37 AM (GMT -8)
A good start...my first GI always said "patience".
I still suggest you request the 4g.

Keep us updated, because symptoms will change as you heal.

q
Posted 2/3/2023 3:52 PM (GMT -8)

quincy said...
A good start...my first GI always said "patience".
I still suggest you request the 4g.

Keep us updated, because symptoms will change as you heal.

q

Yeah, we don’t have 4g available here. Do you think I could do two 60ml 2g enemas at once, one straight after the other as if it’s one 120ml enema? If not I could try one twice per day at different times, but I have quite a lot of bowel movements atm. I must have atleast 10 with urgency and very loose. I’ve been on Pentasa granules for two weeks and Salofalk enemas for one week. So not super long actually smile before Pentasa I was on sulfasalazine, I switched immediately from one day to the next.

I also started Vivomixx probiotic (450bn per sachet) one sachet per day nearly a week ago, maybe I will up to two per day. The probiotic is just an extra bonus on the off chance it might do even a tiny bit of useful stuff
Posted 2/4/2023 10:10 AM (GMT -8)
I don't suggest doubling the enemas...but you could do one during the day and one at night. Doubling them is still 2g, just a larger amount.
When are the majority of your bms during the day?

q
Posted 2/5/2023 6:28 AM (GMT -8)

quincy said...
I don't suggest doubling the enemas...but you could do one during the day and one at night. Doubling them is still 2g, just a larger amount.
When are the majority of your bms during the day?

q

Hmm, yeah idk if its like 2+2=4 where if you do two 2g enemas at once it’s 4g, like taking two tablets one after the other immediately, or whether it’s like 2g but more of it. I have no idea actually, interesting point. I’ll do two at different times in the day for now. I have a lot of free time atm so it’s easy to slot that in atleast smile

The majority idk when they are because my sleep schedule has really deteriorated and become very random at the moment. It always used to be during the morning but right now it’s more like nighttime actually. I think my body clock is very off atm XD
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