Question for any doctors here ....

[larsen_huw]

Hi guys,

My girlfriend has been told by a gastro-ent-er-something specialist (excuse me, medical terms aren't my speciality) that they are 80% sure that my girlfriend has Crohn's Disease. She is having a colon-osc-something-py this weekend to confirm the diagnosis.

Can anyone out there tell me in simple terms what Crohn's Disease is?

Is there an effective treatment?

Does it come back after treatment, or is it gone for good?

Are there any long term lifestyle problems my girlfriend is going to encounter?

Thanks for any help.

To the Moderators: Seeing as this isn't remotely Budo related, i figured it didn't belong in the Budo & The Body forum .... if you disagree, feel free to move it there.

[G. Zepeda]

I'm no doctor, but here's a link with some more info.



http://digestive.niddk.nih.gov/ddise...ohns/index.htm

[CMM]

The Mayo Clinc website has some info available. Try http://www.mayoclinic.com/invoke.cfm...26B22F7133F21, then go through their search engine for more.

Sounds like a tough situation--good luck to your GF.

[Tripitaka of AA]

Huw, if you're thinking that this unheard of thing is a lightning bolt from the blue then I can at least tell you that there are loads of people who have been in the same boat. This doesn't answer your questions, but it might help to know that there are plenty of people out there who know about this condition and its treatment. My two sisters both were tested for Crohn's disease with Colonoscopy. Both were found not to be suffering from that condition. In some ways this is a worse result as it means there will be further delays and more tests required before they find out what is really causing the problem(s).

My wife has also had a similar investigation... come to think of it, so did my brother, and my Dad... I haven't, but that is just me being too lazy to ask the GP for a referral.

I can't remember too much about what Crohn's Disease is, or how you live with it. But then, that's what happens if you get it ruled out. All the worry and concern that went into researching the condition, ends up disappearing in the mists of time as though it never happened... if you end up having it ruled out.

Good luck to the G/F Huw. I know it can be a pain in the Arse , but keep your pecker up, old man. Worse things happen at sea

[Shitoryu Dude]

One of my wife's friends has Crohn's Disease - she has required surgery several times because of it. It does not go away, but it can be treated to some extent.

[Gene Williams]

Crohn's is a serious, long-term intestinal condition that does not go away. It often requires surgery and temporary or even permanent colostomies. The suicide rate among Crohn's sufferer's is high. Good luck.

[Tom D]

Hi Larson, I'm not a doctor but I am a Operating room nurse. I have had several patients with this disease.
It is very likely there will be several surgeries throughout her lifetime. Due to the disease several "sections" of the bowel become usless and cause great pain and harm. So these "sections" must be removed. It is also very possible that an appliance like a colostomy or ilieostomy bag may have to be used. However it may be temporary. It's not a very good diagnosis. You do have your hands full.
What's important is that GREAT support will be needed. Sometimes when someone is diagnosed with a terrible disease we tend to concentrate on medical details and what's gonna happen ten years from now. And we forget there is a person there. Please don't forget that sometimes what's important is what's going on right now with her feelings and beliefs about dealing with this. So go easy.
She will most likely have a normal life with some "interuptions" I have a very good friend with this disease. He is very upbeat and if you didn't know him you would never know he has it.
You guys can control the "Easy" things like proper diet, excercise, no smoking, ABSOLUTLY NO BOOZE, things like that. Sometimes those things are more important and anything else.The complicated stuff comes from her doctor. If you are not happy with how the doctor is treating her, tell him. Or move on to someone else. Don't be afraid to take charge of her medical care. Don't be afraid to ask lots of questions.
It takes time to adjust....for EVERYONE. So be very humble and be willing to take some punches from her. She won't mean things she says and she will constantly have some self doubt about her well being. Some days you simply won't know what to say or do. So just be ther for her. If you need help ask the doctors office. They should be able to give you some support phone numbers. She may be a bit embarased and in denile to accept this kind of help. Take it upon yourself to do it for her if neccesary. The first years will be very hard. Just keep praying for strength and feel free to keep posting feelings or questions here. There are many good people on this website.
Soon she will adjust and do fine in life. It will take time though. Good luck, you have my prayers. Tom

[larsen_huw]

Thanks for all the replies guys.

The exact medical details don't concern me as much as the effects it'll have on my g/f and me.

So thanks to Ton, Gene, Harvey & David for their thoughts on the matter.

We've found out the 'no-booze' already. She started feeling sick after 2 or 3 drinks, so she hasn't had any booze for about 2 months now.

I've done the whole 'be-there' and 'expect a few punches from her' (fig ... not lit!) thing since this started is September. It's not easy. I'm finding it very stressful having to supress my feelings all the time at home, to be caring and supportive 24/7. It's all building up inside, and one day i'm gonna blow! Hopefully once a diagnosis has been confirmed treatment will get her back to where she can lead a normal life most of the time. I can do 'kind & caring' for periods of time, but not perminenetly, without a break.

Oh well, it might never come to pass. We'll have to see how Saturday goes. Depending on the result i may well be back on Monday morning with some questions for you guys.

Even though neither of us beleive in prayer, it's the thought that counts. Thanks once again, everyone, for advice and support.

[kage110]

Huw,

I was originally intending not to post here as medical advice from lay-people can sometimes be worse then useless. However, after reading what other have written here I thought I could add something of use to you and your GF.

I was diagnosed with Irritable Bowel Syndrome (IBS) about 4 years ago (I have probably had the problem for over 10 years) and since then I have learned a lot about the human bowels! (Who said I was full of s***?!). Basically IBS is what the gastros call it when they don't know what is wrong with you. I am fairly disillusioned (perhaps even bitter) with the orthodox approach to medicine and I have come to the conclusion that a lot of so called experts know damn all about anything.

First off, your GF has not yet been diagnosed with anything and just because the gastros think it is Crohn's doesn't mean it is. Even tests often produce a record of a series of symptoms which together make up a condition labled ‘Chrohn’s Disease’ or ‘IBS’ or whatever but these tests rarely indicate why the problem is occurring. Western medicine often makes no distinction between two sets of identical symptoms that have two seperate causes. Something has caused this problem in your GF’s gut so it might be possible to remove the cause and remove the symptoms. Sometimes it might appear to be too late but I have found ways of reversing what has happened to me and managing the rest. So take everything you read/hear on the subject with a pinch of salt until you know for sure. No need to worry unnecessarily beforehand.

Bowel problems are a nightmare to deal with as they cause a great deal of pain and discomfort but there are ways of managing the situation. First of all I highly recommend (I cannot emphasise how highly) getting your GF to visit a particular type of alternative medicine practitioner called a kinesiologist. The first time I met a kinesiologist he had deduced that I had a digestive tract problem within seconds by asking a couple of questions about my sense of taste and smell, looking at my finger nails and then poking a point on my chest. This kinesiologist was the person who made me realise that something was not right with my body and I should get it checked out and this led me to my GP which in turn lead me to the gastroentorologist (sp.?) and then back to kinesiology, shiatsu and herbal medicine.

A kinesiologist can carry out some very basic tests and see if there are any particular foods that are a problem to your GF and she can then eliminate them from her diet. These foods are not ones that cause allergies (so will not show up in an allergy test) but ones that she is intolerant to. My problem is 95% down to eating wheat. If I eat wheat I get bloated, I fart, I get the runs, I feel bloody awful and life is crap (pun intended). If I don’t, I feel like a new man. It is pretty much as simple as that. There are also a few other foods that I need to avoid or make a point of consuming but on the whole wheat is my problem. Wheat may not be your GF’s problem but I would be very surprised if diet was not a major issue at some level.

I was interested to read about her reaction to alcohol as I went through a period where I thought I was virtually allergic to alcohol. I could have 2-3 pints of beer and be throwing up for 8-12 hours the following day. Any amount of alcohol (a bottle of beer or a glass of wine) gave me an instant headache and a feeling of being hung over for a couple of days. I had at the time about 40 bottles of spirits in the house (my GF worked for a distillery at the time) and I ended up giving most of it away to friends (even friends I didn’t know I had!). Imagine my annoyance when two years later I can drink like a fish again!!! Well, not quite - I still have days when on glass is enough to give me a headache but at least I can still go out and have a few drinks with my mates now and then.

The gastros ran a whole series of tests on me but decided not to give me a colonoscopy or a barium meal as my symptoms were not too severe (I have heard of IBS sufferers who cannot work due to their problem) and decided that I didn’t have cancer or Chrohn’s and therefore it must be IBS. When I mentioned to the gastro that I noticed that my symptoms varied depending on what I ate she just said something to the effect of ‘oh, that’s interesting’ and didn’t touch in diet again. Her response to my whole problem was that seeing as it didn’t interfere with my work I would just have to get used to living with it! What I felt after that was shear rage. I have no problem with doctors who are ignorant of what to do as I do not expect any individual to have anywhere near the answer to every problem but I do take great exception to people telling me ‘there is nothing that can be done’ when basically they mean to say ‘I don’t know what can be done to help you’.

Please note that I am not telling you to avoid the gastros and possible surgical options that may be necessary in the future. Alternative medicine does not have all the answers any more than allopathic medicine does and sometimes surgery might be the only way to survive with a decent quality of life. I do however strongly advise finding some good alternative practitioners such as naturopaths, herbalists, practitoners of Traditional Chinese Medicine and, particularly, a kinesiologist and finding out what their take on the situation is. It can cost a bit of money but it is far better to do that than blindly take the drugs and surgery that allopathic medicine loves to foist on us. Basically you both need to become experts on the subject and make sure you retain your ability to say ‘no’ to doctors. Yes they have training and experience but there is a huge amount of ignorance in the medical community when it comes to some very basic points of human health, in particular nutrition. There is a great difference in the nutrition needed to keep a person alive and free of starvation, scurvy, malnourishment, etc. and the nutrition needed to keep a person’s body in top condition. Not all the rules apply to all people and I truly believe – because of my experiences – you are what you eat.

All the best to you and your GF.

Hugh

[Sunndew]

I have to agree with Hugh on the nurtition aspect. I can't eat tomatoes or I get migranes (do you know how many food are prepared with tomatoes?!?!) and my husband can not eat lettuce that has not been soaked in saltwater first. Have your GF make a food diary. She needs to write down every food/drink that she consumes and any problems she might have that day. I think both of you will be amazed at what you will find.
Good luck to you and your GF and I hope the best for you both.

[larsen_huw]

Hugh & Susie,

Thanks for your responses.

We've been keeping a rough track of what Hannah's (i think she deserves a name now! Hannah's my g/f) been eating, but not the the extent of making a full diary of it. It's a good idea and i'll talk to Hannah about it when i get home from work.

Hugh, she's had a regular endoscoptomy (i think that's the word!) and they found ulcers up there and took samples from there for a biopsy. The colonoscopy (appologies to medical types if i'm butchering your technical terms! ) tomorrow is to confirm how far up the ulcers extend. We'll also find out the results of the biopsies. Depending on how things go tomorrow, i may well look into finding a local kinesiologist. Are there many of them? I'd never heard of them until you mentioned the word ... how does one go about finding a kinesiologist?

Thanks for your help guys.

[kage110]

... how does one go about finding a kinesiologist?

Get to know your local off the wall alternative medicine crowd! In places like health food shops they often have business cards up for local practitioners. Do a search on the internet and see what you come up with. You will see that there are many different types of kinesiologist but all use the same basic techniques so don't worry too much about which one to go to. Get contact addresses off the net and start phoning around the organisations looking for local practitioners. You could also do a search under 'touch for health'.

I would love to give you all the answers about kinesilolgy but I don't know them and anyway you and Hannah need to become experts in your own right about what is afflicting her. You are in for a long haul of investigation but I wouldn't be surprised if one day you or Hannah end up practicing alternative medicine and writing books on the subject. So many practitioners started out by having a problem the docs couldn't fix and found out ways to heal themselves and then thought to do it to help others. I have plans along this line myself.

Feel free to PM me (and I will give you my e-mail address) if I can be of any more assistance.

Best of luck to you both,

Hugh

p.s. I am not saying you are going to get a miracle cure from kinesiology but I would be very surprised if no good came out of a visit to one. This illness could lead you both down paths you had never contemplated before!

[larsen_huw]

Originally posted by kage110
Get to know your local off the wall alternative medicine crowd! In places like health food shops they often have business cards up for local practitioners.

Well there's a purple/pink decorated shop in Moseley Village that advertises swingers sessions, sensorary depravation tanks and 'Mexican Shamanic Mushrooms' ... maybe that'd be a reasonable place to start! I'm sure it'd be an interesting experience whatever happens!!!

The news from the quack after Saturday's colonoscopy and biopsy results is that everything points to Crohn's Proctitus, which apparently is Crohn's disease in the last 20cm of the bowel. We were told it's a small area which is one of the most easily treatable.

We were also told that the anti inflamitaries that Hannah's been taking for the last week or so have had a noticeable effect on the Crohns. The course on anti-inflamitories is set to last another 3 weeks, then the specialist wants to wein Hannah off them and (fingers crossed) she'll be able to live normally without the anti-inflamitories for most of her life.

We're both going to wait and see what happens when Hannah's weined off the drugs before making any decisions as to where to go with any alternative treatments.

We were also told there's no prooven link with Crohn's and any diet, so Hannah can eat what she likes for now.

Thanks for your kind offer Hugh, depending on how things go in the next month or so, i may well take you up on that.

Thanks once again to everyone who's given me some advice and/or encouragement.

[kage110]

Huw,

How is this for a coincidence? We had a friend to stay over the weekend and guess what she suffers from? Yup, Crohn's disease. She has been severely ill twice and has had to be hospitalised for a few days both times. She has also had a section of bowel removed. She has had the problem for about 10-20 years and for the most part lives a normal comfortable life providing she doesn't eat wheat or dairy products and remembers to take hers meds when needed. She certainly has no problem having a few glasses of wine or G&Ts!

Hannah should be ok.

We were also told there's no prooven link with Crohn's and any diet, so Hannah can eat what she likes for now.

I would like to point something out about this statement: There is no proven link maybe but that does not mean that they have proven there is no link between diet and Crohn's. The docs do not know what causes Chrohn's and as far as I am able to work out, and our friend confirmed this, that Chrohn's is a classification of symptoms not a diagnosis of a particular virus or bacteria that a person has, ie. they can pin-point the effects but not the causes.

You will obviously make your decisions about what to do next in your own way but I would strongly urge a trip to a kinesiologist. It will cost Hannah about £40 and she may only need to go once. I cannot be sure on these figures so take this as you will but I have heard that your average doctor gets in the region of 5 hours tuition on nutrition as part of their 5 year degree. A registered kinesiologist in the UK will have done at least 25-30 hours. Take that as you like.

From my own experience I can tell you that no doctor would tell there was a link between eating wheat and IBS but I can most certainly tell you that in my case there is. Our friend with Crohn's says exactly the same. In fact, talking to her made me wonder if I have got Crohn's as her and my symptoms matched almost exactly. I gather from her that the docs can detect Crohn's in a blood test if it is flaring up at the time. Perhaps when I was given my blood test I was going through a period of respite?

All the best to Hannah.

p.s. You could suggest to Hannah that she tries to drink Aloa Vera juice (make sure it is the juice of the whole plant and not just extracts of the leaves) as I have found that to help keep my guts in order. I can thank the kinesiologist for that too!

[Sunndew]

I would still suggest that both of you do a food diary for two weeks. It might be that the food is not the cause but that it can triggers some of the problems. By using a food diary I have found that I can not eat Tomatoes. 8 out of 10 times they will trigger a migrane. Now that I try to stay away from tomatoes, my migranes have decressed (I used to have at least 2 migranes a month )

My husband can not eat lettuce which about half if not 2/3 of the worlds population is in the same boat. Lettuce has a micro-organisimn on it that a lot of people can not digest. If I soak lettuce in heavy salt water for about 15 mins he can eat it without any problem, but if he eats any that has not been soaked he will be paying the the bathroom an extended visit.

Food alleriges/reactions are the biggest cause of problems in a lot of people. Heck! just by doing the diary you will be amazed at the amout of food that you take in every day! OH! and if you do this make sure you also put down any fluides that are ingested also.

Good luck to you and your G/F!