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Posted 5/25/2022 8:52 AM (GMT -7)
Hey,

So I am now almost 2 weeks into using mesalamine suppositries. I know it takes a while to notice effects however, I just wondered whether I should be noticing any difference by now or if anyone has from experience.

I found after the first week I seemed to have no leaking up until about 1-2pm which would then happen anything from 2-7 times a day when I sat on the toilet or passed wind.

Over the weekend I felt positive, I had 2 days of pretty much no leaking or other symptoms (no bowel movement at all) Then Monday came around 9am, I sneezed and had to change my clothes!Has happened each morning since when I pass wind. Black mixed with suppository in my underwear and a lot of it. Back to not wanting to even leave the house. I’m wearing pads but still seems to leak onto my clothes..

The positive I take is that I seem to have this episode then most the time nothing for the rest of the day. I feel like when I have a bowel movement there may be less blood (although I’m still constipated and a proper bowel movement is rare) I just can’t seem to get my head around this disease.

I’ve tried to keep track of what I’m eating (I’m only having 1 Meal a day as it seems the more I eat the worse my symptoms are) and I just can’t seem to make a pattern

Can’t get hold of consultant, doctors won’t speak to me about meds or anything as only my consultant can change doses. Seeing him in 2 weeks.

When should I expect to notice a result (by this I mean when should I expect the inflammation to get more under control that I’m not soiling myself)
I think out of all the symptoms this is the one getting me down.
Posted 5/25/2022 10:08 AM (GMT -7)
Jess....

Sorry about all this you are going through. When I was first diagnosed, I went on Asacol and started using Proctofoam. The foam worked wonders, and stayed in. I used it for 3 weeks.

Over the years as my symptoms sometimes flared up, I tried Pentasa Retention Enemas.....they seemed to work as well, after the first couple of days I could hold them in all night. However, my supply expires this month, and I used one that was dark cream color. Probably a bad idea, as I woke up and ejected it all! And it stung.

Because all my flares start in the rectum, I was given the suppositories to try. But I usually leaked them out. " I can leak mucus and blood " almost anytime when I'm flaring.

One thing that has helped me: Proctosone Ointment. You insert into the rectum after every BM and at bedtime. This does not sting, and I believe it works, at least for me, during a flare. I'm not sure if you could use it, but you could ask your Dr.

Feel better soon....
Posted 5/25/2022 12:46 PM (GMT -7)
I think the problem is that you still have to wait to schedule a scope, that is needed to determine the extent of your inflammation. If you have inflammation above the rectum you need the liquid retention enemas to reach that area (sigmoid colon). If there is inflammation above sigmoid, (descending colon or des. colon and higher up) you would need oral UC med, too. Suppositories only treat low-down problems. The consultant should not play at guessing your actual diagnosis, but should authorize your scope scheduling as soon as possible with consideration to your recent hemmie surgery. Poopydoop is familiar with UK health system so she can likely weigh in with more info RE your consultant. Hang in there! / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 5/25/2022 2:15 PM (GMT -7)
It’s very frustrating that there is just no urgency here. I was told 2 weeks ago I’ve been put on the list and I should have it done in 4-6 weeks but im yet to hear anything about an appointment.

I know im being impatient and need a proper diagnosis for them to be able to advise and treat properly, im sure you can all understand how distressing the symptoms are.

Sassysback- thank you for this info it’s really helpful. I had the mesalamine enemas when I was pregnanct however, unfortunately I just couldn’t retain them then the gp switched me to suppositries. I found it all just too uncomfortable being heavily pregnant and kind of gave up on the treatment.

I have asked to try the foam along with the suppositries however, there seems to be no communication between my consultant, doctor and who prescribed me the suppositries therefore they won’t adjust the treatment. When using the foam how long did it take for you to notice it was working? Was it quite quick?

During a flare, when you are using treatment does the leaking blood etc take a while to go away?
Posted 5/25/2022 10:59 PM (GMT -7)

Jessxxx said...
Hey,

So I am now almost 2 weeks into using mesalamine suppositries. I know it takes a while to notice effects however, I just wondered whether I should be noticing any difference by now or if anyone has from experience.

I found after the first week I seemed to have no leaking up until about 1-2pm which would then happen anything from 2-7 times a day when I sat on the toilet or passed wind.

Over the weekend I felt positive, I had 2 days of pretty much no leaking or other symptoms (no bowel movement at all) Then Monday came around 9am, I sneezed and had to change my clothes!Has happened each morning since when I pass wind. Black mixed with suppository in my underwear and a lot of it. Back to not wanting to even leave the house. I’m wearing pads but still seems to leak onto my clothes..

The positive I take is that I seem to have this episode then most the time nothing for the rest of the day. I feel like when I have a bowel movement there may be less blood (although I’m still constipated and a proper bowel movement is rare) I just can’t seem to get my head around this disease.

I’ve tried to keep track of what I’m eating (I’m only having 1 Meal a day as it seems the more I eat the worse my symptoms are) and I just can’t seem to make a pattern

Can’t get hold of consultant, doctors won’t speak to me about meds or anything as only my consultant can change doses. Seeing him in 2 weeks.

When should I expect to notice a result (by this I mean when should I expect the inflammation to get more under control that I’m not soiling myself)
I think out of all the symptoms this is the one getting me down.


If I had my time again i would of skipped suppositories and went straight to enema and definitely included oral
Posted 5/25/2022 11:50 PM (GMT -7)
Yes I feel like this is what I want to try however, my doctor won’t entertain the idea unless my consultant says so. I’m seeing him on 8th June so hoping he will help although not sure if they will do anything until I’ve had colonoscopy

The only thing with the enemas is I struggled to keep them in. Saying that my morning suppository isn’t lasting more than an hour at the minute.
Posted 5/25/2022 11:52 PM (GMT -7)
Also sassysback I hope you don’t mind me asking, do you only leak the suppository/black when you are in a flare. Meaning when you are in remission the leaking stops?
Posted 5/26/2022 3:23 AM (GMT -7)
Jess -- when I first tried enemas I had problems retaining them until I learned about 2 tricks that helped -- 1) warm up the bottle to body temperature (I either ran hot water over the bottle or tucked the bottle in my bra to warm up) and 2) carefully squeeze out the air in the bottle before inserting into the nozzle so all you are inserting is the solution.

I have never experienced "leaking" like you have described, but seems that other have. It will go away once you are in remission.

When you finally get to see your consultant, don't sugar coat anything. Describe how your life is being impacted and respectfully request both oral mesalamine and enemas (to get the quickest relief hydrocortisone enemas would be my suggestion). These are the mildest meds and there is no reason for the doc to withhold them until you are scoped. Yes, they might clear any visible inflammation before the scope, but biopsies would still be able to determine to extent of the spread of your disease. To make you continue to suffer until they can see for themself would be in-humane.
Posted 5/27/2022 11:50 AM (GMT -7)
Jess,
Yes, the leaking stops when I'm in remission. ( I only used suppositories a few times years ago, and don't recall the leaking black. But remember I couldn't hold them in)
What I meant by leaking was more from the start of a flare...i will become constipated, so inflamed that the only thing coming out is"excuse my graghics" tiny turds coated in mucus, and or a explosion of liquid brown/black BM. Urgency increases the longer I let it go without changing my diet a bit, and using the foam or ointment.

19 years ago, it took 3 months to finally get the colonoscopy. I was "moderately" flaring. So once I started the oral Mesalamine, and Proctofoam, it started to work within days. I used the foam for 2 weeks at night. I have used the foam one other time in the past 19 years. I just got another prescription for the proctosone ointment. I think it's helping now during this flare. However, it does not go into the sigmoid colon. But it's great for haemmoroids.
Posted 5/27/2022 12:13 PM (GMT -7)
Another trick with enema retention (found this on an information leaflet from Zurich) is to first use half the enema. Then if you need to evacuate early, your rectum is empty and you still have half the enema left. I find them easier to retain lying on my left side. I just do them right before I go to sleep.
Posted 5/27/2022 2:08 PM (GMT -7)

Sassysback said...
Jess,
Yes, the leaking stops when I'm in remission. ( I only used suppositories a few times years ago, and don't recall the leaking black. But remember I couldn't hold them in)
What I meant by leaking was more from the start of a flare...i will become constipated, so inflamed that the only thing coming out is"excuse my graghics" tiny turds coated in mucus, and or a explosion of liquid brown/black BM. Urgency increases the longer I let it go without changing my diet a bit, and using the foam or ointment.

19 years ago, it took 3 months to finally get the colonoscopy. I was "moderately" flaring. So once I started the oral Mesalamine, and Proctofoam, it started to work within days. I used the foam for 2 weeks at night. I have used the foam one other time in the past 19 years. I just got another prescription for the proctosone ointment. I think it's helping now during this flare. However, it does not go into the sigmoid colon. But it's great for haemmoroids.


This sounds exactly like what I’m experiencing. So constipated but leaking mucus, blood and tiny turds with mucus as you put it.

Diet wise what did you change? For me I’m finding fiber my enemy, any tiny bit I eat I have more urgency. I’m currently having a lot of fermented foods eg kefir, sauerkraut and then sticking to plain food.

I will push with my consultant when I see him to change what I am on and hopefully give me some oral meds. I’ve not had to deal with this before so don’t know how it works with requesting multiple meds or whether they just advise and stick to one
Posted 5/28/2022 5:34 AM (GMT -7)
It's pretty common to be on oral and rectal meds at the same time -- as Quincy always says "treat from both ends".
Posted 5/28/2022 7:24 PM (GMT -7)
You can also just try inserting half the enema if the full bottle is too difficult to retain. They are easier to retain when the inflammation lessens. Good luck.
Posted 5/29/2022 8:46 AM (GMT -7)
Jess....

When I'm in remission, which was mostly for several years, until the past couple years, I cut out raw fruit and vegs, cut down coffee, cut out sweets and ice cream etc. I go on a week long diet of : oatmeal, eggs, white bread, rice cakes, skinless chicken, mashed potatoes and soup. I never drink milk, but eat lactose free yogurt always. Fried foods are not my friend either. Chocholate is my bad habbit, but i had to give that up too. As I feel better, I'll add well cooked vegs, skinless apples and other meat in moderation.

Currently, this is my 5th day of doing this diet and using the ointment. I now have pretty normal bms with minimal urgency. Mucus is minimal, but bms are almost black. Unfortunately I've developed some gerd, nausea as well. So now, i use Gavasgon chewable foaming antacids...they work for me, as I feel a lot better today. However, I've never seen a dietitian or talked to a specialist about the diet.

Tomorrow I finally have a followup call from my GI, it's been 6 weeks since my endoscope and colonoscopy., so I'm going to ask for Proctofoam too. I will post the results.

Take Care..Sassy
Posted 5/30/2022 1:56 PM (GMT -7)

Sassysback said...
Jess....

When I'm in remission, which was mostly for several years, until the past couple years, I cut out raw fruit and vegs, cut down coffee, cut out sweets and ice cream etc. I go on a week long diet of : oatmeal, eggs, white bread, rice cakes, skinless chicken, mashed potatoes and soup. I never drink milk, but eat lactose free yogurt always. Fried foods are not my friend either. Chocholate is my bad habbit, but i had to give that up too. As I feel better, I'll add well cooked vegs, skinless apples and other meat in moderation.

Currently, this is my 5th day of doing this diet and using the ointment. I now have pretty normal bms with minimal urgency. Mucus is minimal, but bms are almost black. Unfortunately I've developed some gerd, nausea as well. So now, i use Gavasgon chewable foaming antacids...they work for me, as I feel a lot better today. However, I've never seen a dietitian or talked to a specialist about the diet.

Tomorrow I finally have a followup call from my GI, it's been 6 weeks since my endoscope and colonoscopy., so I'm going to ask for Proctofoam too. I will post the results.

Take Care..Sassy

Do let us know how you get on with results
Posted 5/30/2022 8:58 PM (GMT -7)
I am sorry you are struggling, Jess. This disease is tough at all levels, including the psychological.

Mesalamine enemas can be very effective if your disease is concentrated on the left side of the colon and the rectum. When I was first diagnosed 21 years ago, the enemas were the only things that put me in remission. At first I resisted taking the enemas--which is of course normal. But then I was so fed up with the disease that I tried them. Within 2 weeks I began to see results: formed stools with no blood and no urgency.

The first few days of putting in the enemas were tough: I felt like I was going to poop them right out! But with time you sort of get the hang of it. I would suggest that you don't let the enemas get cold: that makes it harder to keep in. Start by trying to keep the liquid in for one hour. Work your way up slowly.

My previous doctor (moved to another university) had me use the enemas and the suppository after the enema. He said that this would cover most of your left side--and the medicine is really benign, almost no side-effects if you tolerate the chemical. Also, you could add the mesalamine pills, thereby treating the disease from both ends.

Are your mesalamine bottles 1 mg or 4? When I lived in Europe I believed they were the smaller 1mg--but were just as effective as the 4mg. I say that so that if you live in the US and you have the 4mg bottles, perhaps you can just use one quarter or half of the bottle.

If the mesalamine does not work, biologics are effective and very safe.

Hope you feel better soon.
Posted 5/31/2022 12:15 AM (GMT -7)
We have 4g bottles in Europe smile
Posted 5/31/2022 11:09 AM (GMT -7)

tonito said...
Mesalamine enemas can be very effective if your disease is concentrated on the left side of the colon and the rectum.

Now here is a statement that needs not to be continued. Considering UC starts at the rectum and continues upward and heals downward... makes it an effective medication regardless of where its location extent is. This also goes for steroid enemas. They are NOT meant to be used to treat the entire colon, as many doctors use as a defense to not use them, they treat what they treat, and oral mesalamine (or steroid oral topicals) meds cover the rest.
Both oral and rectal mesalamine should be used regardless...an extremely simple concept. Don't make it more complicated. If people don't want to use them, then just don't and find another option so that it will get the inflammation under control.

q
Posted 5/31/2022 4:44 PM (GMT -7)
Quincy:

I respectfully disagree with you. UC does not always start at the rectum: for some people it starts at the caecum. In addition, if your disease is concentrated in the transverse colon, how is an enema going to reach there?

I think you misunderstand the concept of "healing upwards." Just because, say, the bottom 10 cm of your colon was healed with the enema, it does not mean that it will continue to heal upwards automatically. It will heal IF THE MEDICINE REACHES IT. This is precisely the reason why we have mesalamine pills: the parts of the colon not reached by the enema from below can be reached from above by the pills. No medicine reaching the affected mucosa--no healing of the mucosa. Otherwise it would be magic.

I do appreciate your emphasis on using the enemas, as I myself have benefited from them.
Posted 5/31/2022 7:57 PM (GMT -7)
Inflammation in the descending colon requires oral med. The liquid retention enemas treat topically from the sigmoid flexure downward. Lengthy dosing with steroid retention enemas may improve inflammation in the descending via systemic effect, [rather than by topical effect], but that approach can also cause some unwanted side effects similar to oral steroids. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 6/1/2022 12:26 AM (GMT -7)
If we're going to be pedantic about things.... the effectiveness of enemas depends on the type of inflammation you have and your personal tolerance for the medication. I've had flares where they help (when the inflammation is mild) and flares where they do nothing (when the inflammation is severe). 4g enemas were more effective for me than 2g ones which is logical because they contain twice the dose. I'm quite anti steroid-based medication because steroids gave me severe osteoporosis in my 30s.
Posted 6/1/2022 6:51 AM (GMT -7)
Since when is "pedantic" the same thing as clear and specific? Writing a post with respect --but carefully and detailed--is not pedantic. I don't think we move forward the discussion by using the label "pedantic."
Posted 6/1/2022 9:18 AM (GMT -7)
Enemas only treat the left side, but that doesn't mean they shouldn't be used if you have pancolitis or that if your disease is limited to the left side you shouldn't also use oral meds.

I think this is what everyone is trying to say and what makes sense to me.
Posted 6/1/2022 1:32 PM (GMT -7)
Agreed. That's the point.
Posted 6/1/2022 1:40 PM (GMT -7)
OK....my results came back better...only 30 cm up mildly flaring. The stomach was a bit inflamed too. However, my poops are easier as the inflammation has gone down in the past 7 days using Proctosone Ointment in addition to my regular 5 ASA ORAL meds.

I asked for a prescription for Proctofoam, no problem...however my GI got it wrong and I ended up with a cream...after consulting my GI, and contacting the Pharmacy, they should get me the correct prescription by tomorrow....hopefully, cause I go on vacation Friday! These are for "Just incase" and take up way less room in my suitcase. I was told to only use these for a limited time...wouldn't want any bad side effects.

Also..Jess, I am starting to eat cooked vegetables etc. The Dr. Put me on Metamucil too...said it's good for D And C
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