Diagnosed yesterday

[Gary Mason]

Hi everyone, just writing to ask a few questions after being diagnosed yesterday with Crohn's. Here's a back-story..

Around 15 months ago i started having blood with bowel movements, which quickly turned into a lot of pain everytime i had a BM. I initially thought this was piles and so tried to treat it with no luck. In January of this year i started getting extreme pains close to my appendix that would last just a few seconds, and would only be once or twice a week. This quickly changed to daily, then hourly, then eventually the pain could last for hours/days on end. The pain came and went after a while, as it does now, but i also noticed i was struggling to shift other illnesses that previously would only last for a short period. Throughout this time i have dropped in weight from approx 10 stone to 8 stone. My doctor sent me to our local hospital for tests (at this point an ultra-sound with a view to pin-point an absess on my appendix), which were fine. Around 5 weeks later i had a CT scan which led the doctors to believe i had Ulcerative Colitis. Yesterday however i had a colonoscopy to confirm either way, but the gasteroenterologist immediatly stated as soon as he saw the problem that i instead had Crohn's Disease. I've today started a course of steroids (prednisolone 40mg per day), with the side effects i have read about worrying me greatly.

My questions are:

1) I have NOT suffered from frequent bowel movements/Diahorrea at all. I'm actually quite irregular with bowel movements, sometimes once every other day. Isn't that odd in a diagnosis of Crohn's?

2) I'm not a great meat eater, not for any reason other than i'm not a big fan. I mainly eat lots of vegatables and fruit. Are my eating habits going to have to change dramatically?

3) I'm feeling very nervous about the steroids i'm taking, some of the side-affects sound worse than the crohn's! What are your experiences with this particullar drug?

4) I've got a treatment card to carry in my wallet explaining i'm on steroids, but others have mentioned wearing a medical bracelet/pendant. Is this something you would recommend? If so, where is the best place in the UK to purchase these items?

5) Lastly, do you find that the illness and/or medication are causing major disruption in your lives?

I appreciate this is a lot to read, but at the moment i'm feeling very low and i'm just looking for a little guidance. Thanks in advance for any replies.

 

[D Bergy]

Welcome to the forum Gary.

There are many types of symptoms associated with Crohn's. I rarely had several bowel movements a day, but did have a stricture and some blood on occasion. Others can't hardly leave the house because of chronic big D or loose stool.

I think the medication bracelet is a good idea. I am not from the UK so I can't help you on where to get it. Many fine UK residents here and they will help you if they can.

Some people have a tough time with a high fiber diet. Apperantly you do not, but you still may have foods that irritate your condition. I have identified a few for myself such as milk, onions and strawberries. Fruit in general I have to be carefull with. Just too fiberous in large amounts.

I cannot answer much about medications as I have not used any. There are many people well versed on the various meds available.

Do not get too depressed about your condition. It is controllable for most people.
At least you know what it is and can act appropriately. I have no problems currently and I was very sick for two years without a diagnosis. Now that I know what I am up against, I can do something about it.

I hope you can find some effective treatments. If you do some forum searches, you can find a lot of good information on the various treatments.

Best Regards

Dan Bergman

 

[soupdragon69]

Hey Gary,

We all will understand your anxiety and concerns, your confusion and your low points too. Believe me however that things WILL get better ok?

First thing is you now KNOW what the problem is and it can be managed with much you can do for yourself. Yes you will probably need to look at diet but get your gastro to refer you to a dietitian in clinic who specialises in gastro themselves. Mine are pretty good and do listen to me. Each of us is very different in relation to what we can eat so there is no real "Crohn's Diet" so listen to your own body on that one and remember it may actually be some time down the line that you realise a particular food IS affecting you!

Dan is right that there are many different types of Crohn's and thats because is can occur anywhere from the mouth to the anus and as a result our bodies react a different way depending on the site. Many folk here including me have lower right "appendix" pain that varies in intensity so know you are definately not alone on that one!

Yes the meds and side effects can be scarey when you read them but if you dont take them the implications Crohns wise in many cases are much worse. Another aspect is that the side effects listed MAY happen NOT DEFINATLEY happen. One of the biggest things for some folk is tiredness and sometimes its hard to work out if its the Crohn's or side effects or just you coming down with a cold for instance but you generally can work it out after a day or two and just pace yourself if its general tiredness for instance. Remember YOU are the one that can have the biggest impact in your own care because YOU CHOOSE what you eat, how much you can do each day. It is a constant battle in many respects but you will get there like I said earlier.

On the bracelet front.... I belong to MedicAlert. Google them. They are world renowned and you pay £20 for a year subscription. Its worth it in the sense if you ever have an accident they carry all the info the hospital needs for you i.e. meds, allergies, gp details, next of kin, contact numbers, health problems etc. It works well for me because I am an asthmatic as well as Crohn's so know if ever have probs they can give the hospital all the details. You may feel yourself that you dont need it yet or may never need it but for many it just gives peace of mind. Have a look and see what you think.

I was diagnosed the 20th Dec last year and am tons better to what I was and cant believe its a year already. Hang in there it will get better. Just keep asking questions of your medical team and those that off help. Perhaps think more about joining the National Colitis and Crohn's Society (www.nacc.org.uk). Another site that might help with info is www.crohns.org.uk - its a site organised by the gastro guys at the hospital where I go in the UK and it has helped me alot to refresh my memory or pick up other bits of info and might actually take some of the stress out of it for you too.

Keep posting here too, we do understand as I said and are not medically qualified but DO listen whether you are having a good or a bad day ok?

Thinking of you!

 

[hanaa al baydany]

welcome Garyto our world family.

We all have differente experince with the cronh's. I Think almost each one of us did'nt want to believe that this sufferind is due to this D.

For the headache can be from steroid. But you have to ask your doctor.And about its side effect is that you will gain weight.and you should take calicium to protect your bones.And don't eat much sweet. This what my doctor advised me when i took steriod.

Yes like Bergy said you should not feel depresed . We should respect cronh's by not feelling nor nerveous or depressed.It's here whether we like it or not. we have acept our new D becouse life should continue with it and it will never stoped becouse of it.

we are all here to share cronhn's and to support each other. plz keep posting us. never hesitate to ask any question.

Take care and simele for life.

 

[Gary Mason]

Thanks for all the replies! I feel SO much more positive today. I visited my local doctor today to talk over my concerns and he helped a great deal too. I'm much more confident about the disease, drugs and my own lifestyle now. Thank you so much to everyone here, it's a great relief to be able to talk.

 

[Kev]

Hi Gary, welcome to the forum. Glad to hear you're past the initial diagnosis shock and that coming here has helped. I think that's one of the areas where all of us are similar. As for everything else, this disease, despite being so common, is just about unique in each and every one of us. Your symptomology will be different in places than mine, your reactions or drug interactions will be different, and how you respond to treatments, medications, foods, etc., will be likewise. I did an online diary on pred and imuran/azathioprine that may help you 'predict/expect' what you could face. It's what happened to me, and lots of other folks chimed in with their own experiences. The doctors today have to trot out all of the possible reactions, just to protect themselves from litigation. some of them on face value can be quite alarming, but in general most of us do manage to avoid the 'worst case' scenarios. If you dig a little deeper, often the long term adverse affects are less scary... like a less than .4% increase in the chances of getting this or that.. that sort of thing. nothing to lose sleep over.
As for diet, it too is totally unique. There are some general common areas, but it is often not carved in stone. As soup suggested, a nutrition counselor who specializes in IBD or gastro diets CAN be a real blessing. The other thing that I would recommend is keeping a diary/journal. Record what you eat/do etc., on a daily basis... foods, meds, rest, loo visits, dr/hospital/clinic visits, etc., and let your body tell you what it needs, or more importantly, what it doesn't need. If you do this, you'll more easily tailor your diet, meds schedule, activities level to something that you and your body can live with. Anyway, enuff of my ramble. Once again, a hearty welcome to the forum. hope to see you post here again.

 

[hanaa al baydany]

yes i like Kive's idea about the diary. I myself will start to do it. Thank Keve it's realy lovely and usefull idea.