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My Story .....so far


My name is Sally and I live in the UK, near the South Coast. I think I have suffered with Crohns for years, believing I had IBS, and it was only about 4 years ago, when doctors thought it was my gall bladder causing all my problems, that I underwent an operation for its removal. I was adamant that it was not my gall bladder which was responsible and so the surgeon said he would do an MOT at the same time. It was as a result of the "MOT", that inflammation of my ileum was discovered, and then subsequent tests showed that I had Crohns.

I was put on Pentasa originally, to which I had a severe reaction, losing a stone in weight and having to be signed off sick from work for 6 weeks. After that, I decided to try and manage it myself, with diet. After about 12 months, and after the break up of my relationship, reducing my stress levels, I managed to get myself into remission. All bloods were normal, and I gained weight.

I had a couple of minor flares since, which I believe could have been brought on by stress but was managing to live my life and work pretty much as normal, despite the fatigue, which just really became a part of my life.

On a routine visit to my GP, in July this year, I was prescribed unnecessarily, as it happens, two separate courses of antibiotics and this caused my Crohns to flare big time. I was losing weight again and the pains much harder to bear than that which I had been previously tolerating. I was prescribed a course of Budesonide for 3 months (which seemed to have no good effect), caught a cold and a resultant chest infection meant that I had to take more antibiotics, again worsening the Crohns.

I lost my appetite, lost more weight, contracted thrush on my tongue and felt a total wreck. In fact I have never felt so ill in my life.

A specialist Ultra Sound showed that I had a collection and possibly an ulcer and surgery was muted as the answer to my problems. This was then followed by a CAT scan which showed, there was no ulcer and no collection. So, after several consultant appointments, I was given the choice of either having surgery to remove the damaged part of my bowel, or to take Aza and a Biologic. I didn't want to take either, as I don't seem to have much luck with medication and the possible side effects scared me to death!

So, I did some research and came across LDN. I eventually managed to persuade the Consultant, who has no experience of LDN for Crohns, to let me try it out.

So, I am on my second day - not sleeping so far, but I hope that will sort itself out. I really want to persevere with this as I understand it can take between 10 and 12 weeks to feel any benefit.

This is my story so far. I am self employed, and trying to keep the business together, which I am finding very difficult. Normally, I love life and love my job - so the place I am in is very alien to me at the moment. I try to keep my sense of humour and I am looking forward, hopefully, to feeling more normal as time goes by.

My daughter is getting married at the end of this month - the good news is, that my skirt didn't fall down when I tried it on - I was thinking that I may need to wear braces!!

I will keep you posted as to my LDN experience and look forward to talking to some of you on this site. :)
Hello. We don't have any experience with LDN but some in here do. I hope it works for you. Congratulations in your Daughter's wedding.


Staff member
Hi SallyJane and welcome to the forum! :D

I'm sorry you haven't been feeling well and really hope that the LDN helps you get into remission so you can avoid surgery. I look forward to hearing about your journey on the LDN. :)
Hi Jennifer,

Thank you - I will let you know how I get on. First problem is that LDN is stopping me sleeping at night - fitful and tensionful sleep. Difficult to do the day job! Hoping it won't last for too long.

Thanks, SallyJane, for sharing your story. I just became a member today so still need to get at that. I certainly hope the LDN works for you as well. I've been on meds from all categories but have yet to try LDN. Have read some some success stories - sounds promising. Take care. Sending healing thoughts your way.
Hi Library Girl,

I'm trying to get my head round this site - I think the Crohns must have affected my brain as I haven't quite got the hang of it yet!

At the moment, I'm in so much pain that I feel like crawling under a rock! It took a long time for the approval of LDN here in the UK and in the meantime, my flare has become a lot worse. Still, 3 days into the LDN and I am told that 10 - 12 weeks will tell whether it will work for me. Seems like a long time to wait!

I take paracetamol for pain as it doesn't seem I can take anything else with LDN. Finding that a bit hard. Still - trying to think positive.

How long have you had Crohns - I look forward to reading your story.

Hi Sally

Sorry for the delayed response. Had to tend to some domestic duties. Have an evening shift at work so alittle pressed for time.

I was diagnosed at age 21- actually six days before my 22nd bday. Had surgery for suspected ruptured appendix and they found a blockage as well so was my first resection. I've had five resections to date & been challenged by this disease for 36 years but not defeated! Not currently on meds but considering Humira. Have been on two other biologics and developed antibodies so had to stop using them. That is why I am interested in other options like LDN. My GI does nit support this therapy but my dermatologist suggested it to me which I found rather interesting. He sent me a website for work that being done at Penn State by Dr Jill P Smith. If the website does not go thru let me know & we can PM I guess also not sure yet how everything works.

I reaally understand the pain issues associated with this desease. It can be unbearable at times. Keep me posted on your new journey with LDN. I will tryto get my story up this week. I pray this med will work for you. Take care. Be good to yourself.


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Hi Melissa,

Sounds as if you have had a real time of it. Don't worry about posting late replies as I'm in the UK, and it's now almost 6.00pm. You are probably asleep!!

We must be about the same age - glad to hear you are not beaten! I haven't tried Humira - I seem to be allergic to most stuff and also worry about the long term side effects. If LDN works, it will be great. The trouble is, I have to wait for 10 to 12 weeks - or tough it out - until I know whether it is working. In the meantime, my blood results are getting worse and so am I!! Still, patience is a virtue!

My GI didn't want to prescribe either, but somehow I managed to persuade him! Perhaps you should have another go at yours? I did read Gillian Smith's work and the trials - and there is loads of information on the LDN website - in fact, I gave the web site addresses to my GI - over here in the UK, LDN is not used much, other than for MS, and in higher doses, for people coming off addictive drugs. Perhaps I should take that up :lol:

Speak soon,

Hi Sally,
I think we've both had a real time of it - as we know, CD isn't for whimps!

I really hope you will experience relief with the LDN. I'm believing for you to have an excellent outcome with this med. I've always wondered why drugs can't be of the "fast acting" type. Why it takes weeks and months to get a benefit from them if at all. I do plan to talk with my GI about the LDN again - thanks for the encouragement.

If you are 57ish then we are in range of each other with age. I work full time at our public library for 23 yrs now. Love my job. Have been w/SO for 15 yrs and have a son who is 24 & in college (I was previously married). He also has GI issues but no diagnoses.

How is your daughter's wedding coming along? That must really be excitiing. I hope she is well.

Well it takes me about two hours to right myself for work and I've 30 minutes left, I'll close for now.

Take care.

Hi Melissa,

I'm 59 - perish the thought - the big 60 next year!

I have no SO at the moment - can be quite lonely when things are tough. You sound as though you are happy and settled - a really good thing.

I am an Insurance Broker, although finding it hard to put the effort into it at the moment. I do enjoy it though and determined that Crohns is not going to ruin my life!

My daughter's wedding plans going well - 30th November is the date! On day 6 of LDN and sleep is badly disrupted - sleeping in the day to make up for it - just hope I don't fall asleep in the wedding breakfast!
Other than that, I seem to have a dull headache in the mornings and appetite totally disappeared (although wasn't that good before!)

Do you, or anyone reading this, know whether I can take diazepam with LDN? Thinking that it may relax me at night and help me get at least some sleep?

It's 2100 hours here - going to try and have an early night!

Take care,

Hello Sally,

After viewing your lovely photo, it's actually difficult to believe that you are anywhere near 60.

I know about being without the support of a partner. I lived in California for 11 years and 8 of those I was unattached. I dated but nothing solid. As with most relationships, we have periods of extreme compatibility and then times where we are not. We are happy and probably too settled really.

What does being an Insurance Broker involve - sounds interesting and far more difficult than working in a library.

I'm glad that you have the resolve not to let CD ruin your life because "it" certainly tries at times.

Glad the wedding plans are going well. I hope it will be a perfect day for your daughter and her soon to be husband - Nov 30 not long now until their special day.

How are the headaches? Have you been able to get a decent night's sleep yet? I'm not sure about taking diazepam with LDN. I'd check with the pharmacy. I would think it should help you relax but not sure how it interacts with LDN. Has your appetite improved at all? Mine isn't the best either. I supplement with nutrition drinks like a Boost Protein or Ensure. Tonight I tried a bit of baked honey almond chicken breast (will probably pay for eating the almond crust!) and a small boiled potato. The most I've eaten in a while as far as actual food.

I have an appointment with my GI on Monday and I'm sure he will want me to start medication as last scope shows large ulcers in the SB near anastomosis.

I hope you are improving a little more each day.

Take care. Talk to you soon.

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Hi Melissa,

The photo is blurred! I prefer them that way!!

I would think your job is really interesting - how long have you been doing it for? Never short of a book to read either!

I advise businesses on their insurance requirements - have done this forever - or so it seems - I do enjoy it but am struggling to keep up when feeling like I do at the moment. This is the worst flare I have had - desperate to get it under control and praying the LDN will work for me.

It's weird - this sleeping disruption. I thought it would be tapering off, but last night, I didn't sleep a wink and had a most bizarre dream, bordering on a nightmare. Still, if that is the worst side effect, then I guess I can put up with it for a while longer, but I must stop sleeping in the day! Headaches seem to have gone and all I seem to have otherwise is a really dry mouth - whether that's connected or not I don't know.

I hope you didn't suffer after the almond crust on the chicken. Sounds really nice. I managed a little chicken soup for lunch with a toasted roll but practically had to force feed myself. Most unlike me!! I've ordered in some special drinks from America, but I won't be able to afford to keep doing it as the cost is really high and then there's the shipping on top ........... I just need to get some weight back on somehow. Beginning to look like crepe paper!

Good luck with your consultant - I hope he can give you something to sort you out too. Let me know how you get on. Are you in a lot of pain?

It's a beautiful Autumnal day here - the sun is shining but it's bitterly cold. I jut hope it doesn't snow for the wedding!

Take care,


I've worked at the library for over 23 years now. The work has changed with technology which introduced online card catalogs, e-books, etc. Our focus has expanded based on community needs whether that is providing access to the internet, computer classes, or programming uniquely tailored to special populations. You are right - I am never short on books just on time to read them all!

Are you able to work from home or do you work from an office? Advising businesses on their insurance requirements - would that be items like potential liability, the physical structure, its employees - am I even on the right track here?

I'm sorry you weren't able to sleep - how frustrating that must be. I've heard of some people having strange and frightening dreams as you mention on LDN. Glad to hear the headaches have stopped. I think it's possible the med could be causing dry mouth. For dry mouth, my dentist had recommended a tablet called Xylimelts. It adheres to the gum above the upper back teeth and dissolves over time. I've not tried mine yet but the dental assistant swears by them.

Unfortunately, I did suffer the next morning from the almonds even though they were ground into almost a powder like state - should know better! Sometimes, I just get tired of protein drinks and low residue foods. You are smart to limit what you eat when having a significant flare - I was not so smart:( What special drinks have you been ordering? Getting weight back on can be a challenge (I was once down to 114 lbs & I'm 5'6" tall). Sad as your description is of looking like "crepe paper" it made me laugh:) I had never heard it before.

I am looking forward to speaking with my GI about options. I will let you know how it comes out. Yes, I do have significant pain at times because of the ulcers. I also suffer with a chronic fissure and currently having a seton for a pesky fistula. My GI says the Humira will help remedy both of these issues but I'm still not convinced I want to go on another biologic.We will see.

The sun was shining here today as well. It was a blustery -7 degrees at dawn and a high of around 20! I also hope it doesn't snow for the wedding.

Take care.

Hi Melissa,

Your job sounds really interesting - it sounds as though you really enjoy what you are doing. Are you able to work full time with the Crohns?

I am considering taking some leave to try and get myself better as I haven't got any energy at the moment - everything just seems to be too much at the moment - just getting up exhausts me. Sad person I am:)

Yes, I advise Companies on insurance to protect their business, such as liabilities, material damage, loss of profits etc. I have done this since my teens and it is great to get out and about to meet different people. I can't wait to feel normal again. Yes please!

Thanks for the tip on the dry mouth - I will look into that - I think I am not tasting things properly either. I usually love my food and can't understand why this is happened. It was a little like it before I started taking the meds so not sure if it is down to that. Still having weird dreams - one of which I set fire to myself! (not on purpose!!). Still, hopefully they will go soon and I will at least have a proper sleep.

Yes, I too get tired of low residue foods. I always have Complan in the morning for breakfast and, up until now, I haven't had any other replacement drinks. I may order some Ensure - is that what you have? Do they help put weight back on? I am probably about 116llbs now and 5'8" tall. My proper weight should be more like 142 lbs. My boyfriend (who lives a long way away and I only see him irregularly) will be going off me soon - don't think he's into size zero - and he really has no idea quite how bad I am either, as, when I see him, I don't want to ruin it by being a wet lettuce!

I think I may have a fistula as there was something not quite right about my urine this morning - it seems that it included some undigested mushroom. I don't know if the LDN can cope with healing that too. I think I may have to shoot myself!! :ybatty:

So what drugs are you taking at the moment? I hope your GI comes up with a good plan of action and you are back on the road to recovery soon.

It's only 1600 here and getting dark already - roll on Spring I say and roll on next year as this year has been the pits in many ways. Things can only get better :)

Speak soon,

Hi Sally,

Just read your post. Am heading out shortly with Todd (SO) to find the premier Thanksgiving Turkey - my brother believes we need a 20 pounder! Ignore him, he's slightly insane!

Anyway, just a quick note to say I'm sorry you are still feeling poorly. Don't give up my friend. Remember, we are certainly not whimps. We are strong women who have survived birthing children!

I will reply in more detail later today or this evening. I just wanted you to know that I completely understand where you are with this miserable disease. I'm thinking of you and keeping you in my prayers:)

Take care. Talk to you soon.


We have returned with an 18 lb turkey and it will have to do as I don't think a larger one would fit into the roaster! We also managed to purchase a much needed replacement Christmas tree - a 7 footer with 500 multicolored lights! Since we were on a roll, we ended up throwing in the grocery shopping as well - so it ended up being quite the outing. I feel exhausted!

So no chance that your boyfriend could relocate closer to you or is it too early in the relationship to even be considering such a move/request? What does he know about your health situation? I know it's hard to let people in but if he turns out to be a keeper you will have to tell him at some point.

I do work full-time. I find it to be challenging when I'm very ill as well. I do a lot of public service work with patrons and outside organizations. Love the people as you do but there are times when it's so hard to keep up the appearance of being happy and well

If you are able to to take a leave, I would encourage it. I've taken 6-8 week leaves after my surgeries and intermittent leave when needed. You need time to care for yourself without the pressure of work. You need rest and as much nutrition as you can manage. I currently take Boost High Protein Very Vanilla to supplement my lack of regular food intake. To me, it has the best taste and I find it hard to stomach other flavors like chocolate and strawberry with the nausea I usually have. Do you get a lot of nausea, too? This makes the lack of appetite even more pronounced. If you have nausea, food just isn't appealing and if you have pain when you eat who wants to eat?! Sometimes we just need to rest the bowel and stick with the drinks for a bit but just not too long if it can be helped.

Another thought...Do have a nutritionist available to you? If you do, take advantage of that. My insurance will allow the assistance of a nutritionist if you are hospitalized but not after you are at home unless you have something awful like cancer!

If you suspect a fistula, you should contact your doctor. I started out with a peri-rectal abscess which then fistulized. The abscess kept coming back so had an exam under anesthesia and a seton was placed to prevent the abscess for coming back and so far it has worked. My surgeon said it will be in place for 6 weeks to 3 months and then either replaced or removed. I am getting near the end of that and am really afraid to have it removed for fear of having another abscess!

I hope you are asleep (and, please, not having nightmares) as it must be past midnight there. I hope the morning finds you feeling better, Sally.

Take care,

PS - Replacement drinks haven't helped me gain weight but have helped me maintain it. My weight ranges 124-129 lbs. which is ok GI always wants 10 lbs more! Too much for me. I am not on any drugs currently but considering Humira. Will ask about LDN. I actually found a private practice doctor who prescribes it so if the GI is still against it I may look elsewhere - it will depend on my insurance though.
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