Crohn's Disease Forum » Your Story » Just a quick introduction.

07-17-2015, 01:39 PM   #1
Petra's Avatar
Join Date: Jul 2015
Just a quick introduction.

My name is Petra. I'm Dutch, but live in the UK.
Started having problems with my bowels around 20 years of age. It wasn't diagnosed until 2004 that I had Crohn's. Had a operation then and another one in 2007. I'm now 55.

I'm not taking any meds for it. I stick to more alternative ways of healing.
I am very thin and struggle putting weight on.
I have tried different things over time and some were helpful, others not.
I haven't stopped looking for the cure though.
While looking for stuff today I came across this forum and decided to join.
I hope I can be of some help.

07-17-2015, 03:31 PM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello Petra, welcome to the forum!

I'm glad you've found us and I hope that we can be some help to you as well as you helping us. I look forward to seeing you around the forum and I'm sure you have much to share with us.

If you ever have any questions or concerns please don't hesitate to ask us.

Regarding your weight - have you ever tried any nutrition shakes like boost or ensure?

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
07-17-2015, 05:39 PM   #3
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Honey's Avatar
Join Date: Mar 2013
Location: United Kingdom
Hi Petra, and welcome. Glad to hear you are doing well. I have been well for a year and a half after coming off Remicade infusions. I had to stop due to reaction - ended up in hospital with a lung infection. I am now being asked to consider going back on it as my Calprotectin results were very high! I do watch my diet but when Crohns was at its worse, all food upset me. In a dilemma just now! Best wishes, keep well.
07-17-2015, 07:04 PM   #4
Senior Member
teeny5's Avatar
Join Date: Jul 2008
Location: California

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Hi Petra! Welcome to the forum!
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-17-2015, 08:00 PM   #5
Petra's Avatar
Join Date: Jul 2015
Thanks guys for the warm welcome.

I will tell a bit more about myself tomorrow.
07-18-2015, 07:22 AM   #6
Petra's Avatar
Join Date: Jul 2015
I was reading a bit here and there on this forum yesterday to get some idea of the struggles others have or had. In one way it was strange as I never talked with other sufferers about their experiences.
Anyway it will take a while before I'm up to speed with everyone here.

Reason I arrived on here was actually because of toothache believe it or not. I had an infection under one of my teeth and was given anti-biotics by my dentist. Now firstly I rarely take meds, rarely take painkillers. I prefer for myself a more natural approach to illness. Not that I'm against meds, but if I don't have to take them I won't.

In this case I had already suffered toothache for 10 days and wanted it gone. The dentist asked if I was allergic to anything and I had said no, because as far as I'm aware I'm not.
I didn't (as I usually do) look if there were any side effects to the anti-biotics. I was too desperate to get rid of the pain. Now that was a big mistake in hind side.
They made me feel very ill. I felt generally unwell, had extremely watery diarrhoea (I have the runs most of the time, but this was a different kind), I got headaches, felt very weak, wanted to lie in bed a lot (that's not me). I still had to take painkillers for the pain, which I'm sure didn't do me any good on top of it all.

Anyway when I reached the last day of the cure I was desperate. My toothache wasn't totally gone yet and I really didn't want to take the pills anymore as I felt they weren't doing anything for me.
I went on Google, typed in the name of the anti-biotics and one of the first things I read was....If you suffer from Crohn's consult your doctor before taking this.....I had quite a few of the side effects listed so it explained everything.

Now I had a dilemma, to stop straight away or carry on. I had 3 more pills to go. I still had toothache. I already felt ill. So should I finish the course and hope it would then be the end of the toothache? Well I opted for that.
If stopping straight way would have made any difference to what came the day after I will never know, but I had the worst colic attack I had in years and it totally wiped me out. I took one Tramadol (these I only take when I'm in severe pain and that is rare (most of the time I have different ways of coping with pain), which didn't work while it normally gets me off this planet within 20 minutes. Tried another one, which I threw up again practically immediately, so my whole system was messed up and I was even more ill.

Worst thing is that all anti-biotics can have this effect on a sensitive digestive system, so where do you go from there...........
As usual I was looking into more alternative ways tackle the toothache and that's how I somehow came across this forum at some point.

I became interested in Alternative meds in my twenties as the GPs and specialists were no help what so ever. They said after all sorts of tests that I had irritable bowel in the end and had to learn to live with it, and my own GP at the time seemed to believe it was all between my ears. So basically I was making it all up in his opinion. Well there you go, what do you do? You start your own research to find some kind of solution.

My Crohn's was finally diagnosed when I actually felt that I was at deaths door (I was 44 at the time), living only on Jacobs crackers with butter for months and losing lots of weight, demanding that my GP send me to hospital as soon as. He asked me if I was sure (I am 5 foot 6 and weighed about 45 kg at the time)...I told him that if he didn't I would be dead in a week. That's how I felt and I wasn't far wrong. I must have sounded pretty convincing as I was in hospital within a few days. And there for the first time in my life someone listened, really listened (I was in tears that someone actually took me serious) and they then told me that they thought I had Crohn's, but needed to run some tests to confirm this.

I was put on steroids straight away and for the first time in years I had no pain, I wanted to eat again. Two weeks later I was operated on. They took about one meter of my small intestines out.
Over a couple of months I gained weight again and could eat anything I wanted. I felt it gave me my life back.
One of the specialist, who looked at the x-rays after what they called a Barium follow through test (the only test that was never done before), was shaking his head and asked me how long I had suffered with this as there were many places where the intestines had become very narrow. It was like looking at one of those long balloons they twist in weird shapes. I told him for the last 20 years or so. I think he was horrified by this.

My consultant, Mr Hill, also showed me that they had found a handful of gall bladder stones in my intestines, that somehow had found their way there. They could have been my death as they obstructed the intestines of course, so I wasn't far off thinking I was on deaths door. I had had gall bladder scans in the past, but everything was always ok....All in all I felt that the doctors in the past had let me down and if diagnosed sooner the quality of my life could have been a lot better.

My GP did apologise to me though. I did tell him that I was willing to take some responsibility for my own situation, because if I had pestered everyone more and had come to the surgery more often, then maybe someone would have taken more notice sooner. But at the end of the day we all like to be able to trust our doctors to listen to us and take us seriously...he obviously never did. I never wanted to see him again after all that.

What I would say to anyone after my own experience............don't suffer in silence, make sure people hear you..............You know your own body, you know when something is really wrong. Don't take no for an answer, go by what you feel and what your body is telling you. Sometimes we are afraid for a diagnoses that could even be worse (I know I was), but it's better to know where you stand than living in uncertainty.
I didn't become computer literate until my early 40s, so I had no easy access to information or forums. But there is a wealth of knowledge out there and I will never stop looking. I wish I had access to it earlier. It's never too late though.

This is more than enough for now I think. I'm ok at this very moment and am trying to get my body back to health with supplements etc....
Toothache is still nagging me, but I will get through this.
07-18-2015, 03:42 PM   #7
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teeny5's Avatar
Join Date: Jul 2008
Location: California

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Thank you for sharing your story. I hope your tooth gets better soon.

Crohn's Disease Forum » Your Story » Just a quick introduction.
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