LDN or Nightly enemas for...Ever?

I REALLY need some advice here...i wanna enjoy life with my little family again :(

I had been in remission for a good 6 months then a proctitis flare started late jan '12. I got out of it by religiously using nightly 4g mesalazine enemas. And pentasa supps in am By 1st of march i was symptom-free but i continued the nightly enemas and supp in am for 2 weeks to make sure the inflammation really dies down.

ok then i started to eliminate the supps and continued with the enemas every night for 1 week. That also went well. I was having 2 BMs in am which were formed with no blood or pain or urgency. Ok maybe there was mild urgency but maybe it was because of the enemas as it was only before the first BM.
Anyway life was going great and i was, for the first time in a looong time, starting to feel attractive and healthy again. I celebrated my son's birthday and it was awesome -life couldn't be better.

Then i started the next step of the taper whhich was doing the enemas every second night and using the supp the night between. After a couply of days on that i started to see traces of blood. The after a dinner at a friend's house where i ate a bit of red meat and a bite of cake (gluten cake) the next day the toilet bowl was redd!!! it was scary how much blood.

I don't understand? is it the red meat, the gluten or the enema taper? tbh since being dx i avoid red meat because i once ate it while i was still on the pred and still healing and it made me run to the toilet. An back then i was the camp that "Food causes Flares" so i immediately eliminated it. However since then i have eaten it occasionally without a problem. And as for gluten it usually only gives me problems in large amounts.
Anyway now im back to nightly enemas and the taper regime is out the window. Ive also added aloe vera jucie 40 ml BD. Now the blood is almost gone but i have this feeling of rectal 'pressue'.

I don't know what to do! i feel trapped. Im considering trying LDN after reading some of the posts here on hw.

What do you guys think?

I also have a question for Q (the mesalazine pro): can i keep taking 4g mesalazine enemas for *gulp*...ever? safety-wise? Because they seem to work for me but it's really not fun using them.

I just wanna get my life back and im sick of trying things that don't work.

Hi...I personally don't believe it's the meat or the cake since you were already having some urgency in the mornings.

You can try the LDN, but I have no experience to offer on that. But, I wouldn't drop the 5ASA just yet.

I've been through the same as you the first and second year, the longest I was on nightly meds was 4 full months.

But, for you, at this point...it might be a very small area that's still on fragile state, and maybe sticking with the Pentasa supps in the morning and going back to the enemas nightly for 2 weeks will get you back on track.

When I do the enemas, I withdraw the nozzle a bit after the initial insertion...right to the very bottom of the rectum/anus, then back in again.

You do have pancolitis initially...have you missed any oral dosages of mesalamine?

Maybe, just maybe change your probiotic and see if things improve.

Which benefibre exactly are you using?

Maybe when you start tapering, don't drop the daily pentasa supps, and still do one on the night not doing the enemas.

You might also ask the doc for a steroid suppository to use during the day and the pentasa for tapering...you have some options.

Did you just start your period recently? or soon to start?

It's also been a year since the birth of your child...are you still breastfeeding? recently stopped, etc? Are you having any other hormonal ups and downs?

Hang tough...I can understand your frustration.
q

Give LDN a try!

I still think you should change your fibre and probiotics.

periods will always set you back.

Are you on the pill?

Yes, you were tapering with the supps, but dropped the daily one...I would go back to nightly enemas, daily supps until your period is over. 

Which benefibre exactly are you using?

http://www.benefiber.com/products/index.shtml

q

DBwithUC,

You are not quoting accurate results on the LDN studies.

http://www.ncbi.nlm.nih.gov/pubmed/21380937

"Eighty-eight percent of those treated with naltrexone had at least a 70-point decline in CDAI scores compared to 40% of placebo-treated patients (p = 0.009). After 12 weeks, 78% of subjects treated with naltrexone exhibited an endoscopic response as indicated by a 5-point decline in the Crohn's disease endoscopy index severity score (CDEIS) from baseline compared to 28% response in placebo-treated controls (p = 0.008), and 33% achieved remission with a CDEIS score <6, whereas only 8% of those on placebo showed the same change. Fatigue was the only side effect reported that was significantly greater in subjects receiving placebo "

 

I don't know about you, but I think 88% is a significant result.

 

Wow InSoFla these numbers are good!!
I guess you are all right i have nothing to lose i can just try it. Im making an appointment with my GP to ask for a script; do GPs write these sorts of scripts? My GI is on leave atm.

Is LDN safe during pregnancy? (in case i decided to ttc)

Q: sorry i wasn't specific in my reply. iam using the Original Grit-free Benefiber Powder made frrom wheat dextrin and is gluten-free.
The reason i like my probiotics is (other than studies backing them) they are the only ones that don't make me constipated. LOL ironic isn't it. I have tried other brands and they make me constipated and that resulted in me getting a fissure 5 months ago which is the reason i started the benefiber. Are there any probiotics that don't have this side effect? btw i was taking less than 5 billion cfus per day and still gave me this s/e.
oh im not on the pill. Figured i don't wanna mess up my hormones with this disease otherwise i would have gone on it.