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My Story


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 the other day - 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. :)
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