I've been suffering for ages and now I know it can only be Crohns

by Clive
(UK)

It all started six years back or more when from being a gym obsessive and hyperactive person who only slept 4-6 hours a night I now take naps in the afternoon and have been a virtual hermit for over a year.

Luckily I was able to take early retirement from work or I would be in a terrible mess, but on top of the abdominal problems, when I had a scan a giant cyst in my right kidney was found which turned out to be malignant and and the whole organ had to be removed.

The investigation had started over my digestive ailments and my GP and I thought that this may have been the problem. Anyway during my hospital stay of 10-14 days I insisted on only eating soup to avoid the problems I knew I would face. Recently I have also gone 10 days without food to try and stop the suffering. The reaction of the hospital consultant was to roll his eyes as if I were behaving like an anorexic.

It is only by reading other peoples accounts of this disease that I know I have absolutely classic symptoms and am devastated that no specialist ever picked this up. The only way I managed to resolve the anal pain I was suffering was to use an analgaesic gel that I had had prescribed for another complaint - and my GP rebuked me for that.

I now know that there are specific gels for this purpose and liquid food replacements and none have ever been offered to me - LEAVING ME TO LIVE ON SOUP IN HOSPITAL. It's hardly believable but true.

I have been waitng to see a Gastroenterologist since April this year and if it upsets him that I have diagnosed myself I'll have to apologise that none of his colleagues appear to have the most basic knowledge of the disease.

SYMPTOMS
Bloated abdomen.
Pains to the right side of belly button
Constipation and diahorrea
Severe anal irritation leading to bleeding
Intense fatigue
I had a 'boi' close to my anus that made sitting painful and wouldn't disappear for months - possible fistula.
Many foods that i thought were soothing my digestion merely made it worse - examples ice cream, dairy products and fibre, though once activated my system won't accept food at all.

Recently I have noticed that meat tends to make me feel ill and faint but it stops my bowels working, I'll investigate if this is caused by my digestive system having difficult handling it or breaking it down. That has good and bad potential effects.

Comments for I've been suffering for ages and now I know it can only be Crohns

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Suffering NEW
by: Annette Young

Hi there,

I am so sorry to read about the amount of suffering you have experienced. Many doctors do not fully understand Crohn's disease. I hear this time and time again. Unfortunately, it is only when you get to see a specialist doctor that they can make a diagnosis. Some people wait years to have a diagnosis confirmed because tests come back inconclusive.

Your symptoms certainly sound like Crohn's but there can be other conditions too. But I would suggest you keep a food diary in the meanwhile and keep account of all of your symptoms. This can really help the specialist to be able to confirm diagnosis.

In the meanwhile, keep your diet as basic as possible. Eat easy to digest foods, soups, pureed foods. Certainly nothing spicy. Avoid dairy too. Many crohn's sufferers have found that they are lactose intolerant too. Do not have alcohol or fizzy drinks and if you smoke, please consider giving up as smoking is a known trigger.

Stress is another trigger so where possible, limit the amount of stressors in your life and try to rest as much as you can, becoming more active when there is less pain and discomfort.

I really hope you get your diagnosis/medication and start to feel better soon.

Best wishes,

Annette
Your symptons
by: Dave (England)

Hi Clive

I have been told I possibly have chrons. Quite upsettign that atfer almost 8 years of symptons and testing its still only a possibility. My symptoms have included ones very similar to yours:-
Pain to the right of my abdomin
Constipation
Diahorrea
Tiredness
Anal irritation
Bleeding
And also like yourself I had what I would have classed as boil next to my anus which was in fact a fistula.

I am currently taking a course of steroids to try to reduce the inflamation which causes the abdominal pain and to be fair it is working. The only thing is that I can not take these long term as they will damage my bones!

Good luck in finding your answers.

Take care

David
First aid
by: Anonymous

Crohn's is not the only possibility, but it looks like a fairly good bet. Until you get to a GI you might consider trying the Specific Carbohydrate diet: http://www.scdiet.org/ . It has had some success in helping Crohn's. You also need to deal with your nutritional needs. You gut is likely not absorbing food normally (this makes the disease worse by passing more food to your gut bacteria). You should take a multi-vitamin (iron free) and you may also be B12 and iron deficient. B12 is well tolerated, but some people cannot stand iron supplements (which need to be taken at a different meal from the multi-vitamin). In that case, you need to eat lots of liver. Vitamins E and C (take with the multi) is possibly useful in reducing inflammation. You should also consider a whey supplement (or making your own yogurt or kefir - see info on the SCD web page above under recipes). A suitable whey supplement would be 98 - 100% lactose free and have no added sugar or FOS. Choose a flavor other than chocolate.
Crohn's
by: Shawna Missouri

I know how frustrating it can be, but just know YOU ARE NOT ALONE.... Hope you get the help you need soon.

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