First flare since 2008 on LDN

After all these years using LDN 4.5mg daily. I am experiencing my first flare. I first started LDN in Febraury 2009 and have had virtually no sympoms all this time.

It has been a very stressful year at work and in the family and my menopause is coming to an end. Nothing much else has changed in my life. For a week now I have had windiness, gripes and a need to poo about every three hours, day and night, but especially just after food. There has been no fresh blood, but one of my stools was black! There is some mucus, but otherwise mostly runny and normal colour.

I am so disappointed! I am using steroid foam rather than anything systemic, in the hope of settling things down. I am keeping LDN going. Also, I am trying to cut out the most likely dietry triggers.

I have sent in a stool sample and bloods. the latter to check hormone levels. I use HRT of the sort that allows periods, but have had a year without periods. I will soon find out if my HRT needs changing.

Any suggestions folk?

Hi....absolutely change in hormones will affect UC, possibly based on prostaglandin production.

I had a hysterectomy in 1993, and in around 2005 I decided to wean off the estradiol patch. Slowly, no problems for months. Once my levels had crashed to the point of hot flashes, I started flaring, but with bleeding (which I hadn't had bleeding in 14 years with any flares). I sure there were other factors as well since I was usually tapering rectal maintenance to once a week, but I can't remember exactly.
I did start back on the patch and rectals nightly.....whew, I definitely felt much better considering all hit at the same time.

I do, however, suggest getting on mesalamine oral and rectal...enemas not suppositories.

As well...ask for an abdominal ultrasound of your ovaries to make sure nothing else is going on. Ask for follicle stimulating hormone blood test and other tests such as liver function.

Keep us updated.

q

You'll likely need more than just LDN to beat this flare. What meds are you planning to use?

Why not mesalamine?
q

I would strongly disagree with this Bob Lawrence person. Ugh. No evidence that diet "cures" and meds mask, complete load of bs. If it was a cure then there would be no reason to continue a diet on an ongoing basis, like taking medication on an ongoing basis. It's exactly the same...

Hardkaur, who is Bob Lawrence? I assume he’s not a GI. Is that right?

In answer to all the responses above; First of all thank you. I'm really struggling and need to take all views into account.

Up to now, LDN, which is free of lasting side effects, has been the answer for me. However, it is not a magic bullet of use to everybody with an auto-immune condition. (iPoop) Bob doesn't say LDN combined with dietry adjustments/probiotics is a 'cure'. It is a method of 'control', but one that gets to the root problem rather than tackling the symptoms. The dietry adjustments and LDN are long-term, not something you should stop once stabilised.

LDN works by stimulating and modulating the immune system. Immune disorders are caused by an imbalance of helper and effector T-cells. in auto-immune conditions the effector cells T-cells become out of control through a reduction in helper T-cells. By boosting the immune system, I am told, the increased helper cells stop the effector cells going wild and attacking your own tissues as if they were foreign bodies. This is the way I understand it. The Wiki on this is hard to get my head around and makes my brain hurt lol.

Becuase LDN appears to have helped me for almost 10 years now, enabling me to live a normal life without powerful and dangerous NHS drugs and has avoided threatened surgery, I am not done with it.

My first plan, given my relapse, is to eliminate the things that have changed in my life. Firstly, I hope my bloods show that I need to increase my estrogen levels now that I have not had a normal mentrual cycle for a year now. I did get complacent about diet, so, following Bob's advice, I am going to reboot my use of FOD foods and pro-biotics. The steroid foam has not settled things down, so I will stop that. Some of the stresses I have experienced will time themselves out, but others not. I guess I need to get these in perspective! I may have to be patient to see improvements. I hope this period of needing to poo every three hours, and just after meals, is not incompatible with my job as a school head teacher!

Plan B, if Plan A fails, is to temporarily use one of the standard heavy-duty NHS drugs with HRT and dietry adjustments to get my system settled, before giving LDN another try.

I don't even want to think about Plan C yet.

Here are some links to literature on LDN (Low-Dose Naltrexone) and to info on Bob Lawrence. He is a fully qualified and registered British doctor, not a GI specialist , based in South Wales. To be a registered doctor in the UK you have to go through a tough annual appraisal. No quacks here? Bob is also an MS sufferer who uses LDN to keep his condition at bay. His MS has stopped progressing, although he does have good and bad days. https://www.ldnresearchtrust.org/content/dr-bob-lawrence / http://dietaryresearchltd.com/

We were introduced to him through an LDN forum. Can't remember which one. http://ldn.proboards.com/

Follow the patient pathway on this link: https://www.ldnresearchtrust.org/

This link is also worth a browse through: http://www.ldn-international.com/

... and this one: https://www.lowdosenaltrexone.org/index.htm

Thanks Poppy. That was my first instinct, but without the LDN in the first instance. Because LDN is an immune stimulant it cannot be taken with meds that suppress the immune system. They would fight each other. This is possibly why the rectal foam stopped working. The steroids were probably getting into my system and opposing the LDN.

When I get home from our family vacation in Cornwall, I still have a week off work. I'm going to maintain a pure FOD diet, (something I lapsed on), hopefully get my HRT at the right level, up the probiotics to 15 billion and hang on. If I can reduce visits to the toilet, without nasty surprises, to 5 hours then work becomes possible.

I am so tempted by the Aza option, for quicker results, but given the long-term progress I had with LDN, Aza would be a step in the wrong direction. I'm going to be patient and keep Aza for Plan B.

Yesterday, I managed 5 hours poopless overnight after a light supper, but during the day, only 3 hours. At least things are not getting worse, but, because of the humiliation of soiling myself in public, I haven't dared leave the apartment. This is such a shame. I'm looking out the window now watching the morning sun hit the the cliff tops around Carbis Bay. I want to be out there!

I'm sticking with Plan A until it clearly works or doesn't work. Plan B, which is a massive change of direction, will come in if Plan A doesn't work. I am currently thinking about what Plan C might be.

My point was neither meds nor diets cure anything, there is no cure for UC period, both of those types of treatments only treat symptoms of UC. If a diet cured then you could discontinue it and never worry again. If a medication cured then you could discontinue it and never worry again.

Finally, I got to see my own doctor! All my blood, wee and poo samples are fine; no infection or signals for something nasty. Oestrogen lower than a year ago.


Regarding the cystitis and dryness down there, my Dr was cautious of raising my oestrogen straight away. Instead, she proposed that I should have my bladder checked out internally just in case of polyps or something else. Raising the oestrogen could mask issues, she felt. (Appointment in a few weeks) Consequently, I will have to wait to see if higher oestrogen levels might help my UC. This doesn't mean my doctor thinks higher oestrogen might not help. She thinks it might, but feels that one thing should be dealt with at a time.

The school vacation is over, and I have been back to school for two days. I'm managing - just. The need to poop is now approximately 03.00; 07.00; 15.00 and 19.00, but with windy gripes in between sometimes. By timing my FODMAP meals carefully I can begin to judge when I will need to rush to the bathroom. Obviously, for now, I am continuing with LDN 4.5mg and probiotics now at 60 billion! I bought some Psyllium Husk to prep my gut for enhanced bio-culture, but went for the loose variety. It is virtually impossible to take! It's like eating wallpaper paste! The capsule form has a gelatine shell which goes against my vegetarianism. I have postponed that! If I get no further improvement after a week I will have to try again.

So, for now I have improved enough to live my life and have somewhat more energy than 2 weeks ago. Bob Lawrence say I will need patience to get my normal status back. Here's me crossing my fingers and my legs.