Crohn's Disease

thingamagig

CarrickMcJoe wrote: »

It was the only fistula I had, but the pain was excruciating. Both sh1t and puss built up. Was told it does happen but by a general surgeon and not a specialist on the subject. Weight dropped from 13 to 9 stone, blood count of 6. Constantly getting transfusions. Never saw a doctor since op, until I had a feckin heart attack in Sept

Crikeys, I was dealing with more of a quality of life issue. It was more humiliation than I could take really. It sounds like something silly, and most issues relating to the bowel are laughed at, but there is nothing like experiencing the daily humiliation of defecating in public. Nothing. .. I did not experience any major blood or weight loss. Great that you got through that period. Sounds so tough- mentally and physically.

OUTDOORLASS

NEWS FLASH NEWS FLASH

Just announced on RTE2, Nicky and Jenny....a frenchman has invented a pill that will make your flatulance
smell like chocolate...EUR9 for a jar of 60.
One major stresser for Cronhsies sorted.........LMAO.....

Wonder would Santa bring a jar for us all......

thingamagig

thingamagig wrote: »

Crikeys, I was dealing with more of a quality of life issue. It was more humiliation than I could take really. It sounds like something silly, and most issues relating to the bowel are laughed at, but there is nothing like experiencing the daily humiliation of defecating in public. Nothing. .. I did not experience any major blood or weight loss. Great that you got through that period. Sounds so tough- mentally and physically.

P.S. apologise for missing the last of your message. Wish you a speedy recovery. take it easy

The_Conductor

OUTDOORLASS wrote: »

NEWS FLASH NEWS FLASH

Just announced on RTE2, Nicky and Jenny....a frenchman has invented a pill that will make your flatulance
smell like chocolate...EUR9 for a jar of 60.
One major stresser for Cronhsies sorted.........LMAO.....

Wonder would Santa bring a jar for us all......

Hmmm- I know I'd definitely give it a try!

thingamagig

P.S. apologise for missing the last of your message. Wish you a speedy recovery. take it easy

The_Conductor

CarrickMcJoe wrote: »

It was the only fistula I had, but the pain was excruciating. Both sh1t and puss built up. Was told it does happen but by a general surgeon and not a specialist on the subject. Weight dropped from 13 to 9 stone, blood count of 6. Constantly getting transfusions. Never saw a doctor since op, until I had a feckin heart attack in Sept

Fecking hell- a full on heart attack?
I've had the same bloods trouble (since an adverse reaction to Imuran)- and can't absorb iron at all (at the moment I'm getting Ferrinject and Venefer in St. Vincents every Friday). Thankfully- I've never had a heart attack- and I hope it stays that way. How are you coping now? Its shocking that things have to deteriorate to the extent that you had a heart attack before another doctor saw you- its quite shocking.

CarrickMcJoe

The_Conductor wrote: »

Fecking hell- a full on heart attack?
I've had the same bloods trouble (since an adverse reaction to Imuran)- and can't absorb iron at all (at the moment I'm getting Ferrinject and Venefer in St. Vincents every Friday). Thankfully- I've never had a heart attack- and I hope it stays that way. How are you coping now? Its shocking that things have to deteriorate to the extent that you had a heart attack before another doctor saw you- its quite shocking.

Had nothing to do with colitis, just never needed to see doc. Got 2 stents in and don't expect any more problems . I'm now 14 st and only on meds now to prevent any more heart problems.

The_Conductor

Human pin cushion here today.
2 nurses and the senior registrar have failed to get a line in- they've called theater for the anaesthesticist who is going to have a go next....... My arms are in bits! On the bright side- the coffee is good...........

Northern Monkey

The_Conductor wrote: »

Human pin cushion here today.
2 nurses and the senior registrar have failed to get a line in- they've called theater for the anaesthesticist who is going to have a go next....... My arms are in bits! On the bright side- the coffee is good...........

That happens me all the time when getting my bloods done. I know the nurse hates to see me coming!

The_Conductor

Northern Monkey wrote: »

That happens me all the time when getting my bloods done. I know the nurse hates to see me coming!

The anaesthesticist got it on the second go- I have an interesting collection of bruises coming up........ On pre-meds now- hopefully out of here in a few hours (until Friday again).........

Yes- I think they're going to be a lot more cautious about trying to put lines in here in future- its up there with the worst tally (of 9 attempts by 4 different people) to get a line in.........

Todays explanation- slippery veins......... (that- and veins not being where they are supposed to be- and collapsed, etc etc)

lorebringer

Anaesthetist are amazing when it comes to getting veins! Mine are very hard to get (end up looking like a Frisian cow!), can't find them/can't feel them they blow easliy etc. etc. but the anaesthetist gets them every time - *poof* miracle!

The_Conductor

lorebringer wrote: »

Anaesthetist are amazing when it comes to getting veins! Mine are very hard to get (end up looking like a Frisian cow!), can't find them/can't feel them they blow easliy etc. etc. but the anaesthetist gets them every time - *poof* miracle!

Friday worked better for me- the nurse managed to hole-in-one- got it first attempt...... I like it when there are days like that. Wonder what Monday is going to bring.......

shalalala

Hi Guys, I just want you to all keep praying for my friend. She is awake, no brain damage but her left side isn't working still.

Yesterday they tried to give her food and her whole body reacted. She had emergency scopes and the crohns is back with a vengeance. It is in her mouth, esophagus, small and large bowel.

They actually don't have a clue how to feed her!

Prayers needed from all x

uck51js9zml2yt

I cant read through 1500 posts to get any answers ..sorry

My wife was diagnosed last week with Crohns.

She had been having abdominal pain during the summer but was so bad in September that they admitted her to the Mater thinking it was her appendix.
After a rake of tests they decided it wasn't that, or indeed anything pathological and sent her home, still in pain.They had to give her morphine it was so bad and she had a CT scan done which showed nothing.

Anyway, 2 weeks later we called the ambulance again and the Doctor in A&E gave the same all clear( despite the pain) but said it could be abdominal and to get scopes done.

We went private to St James and got scopes done in November and we are were we are with inflammation of the large and small intestine and some stomach ulcers which they started treating after the scope.

Brian Meighan in St James' is referring her to Jan Leyden in the Mater( its closer to us)

Has anyone had any dealings with him?

We're hoping for an appointment in January.

What should we expect with Crohns? Meighan couldnt say how long she's had it but I'm hoping we caught it early.

Thanks for reading.

Forgot to say..we also have 2 young kids.

Northern Monkey

Sorry to hear that tatranska. Chrons is unfortunately a disease that affects sufferers in different ways, so unfortunately there are no hard and fast rules with it.

The first bit of advice I would give your wife between now and the visit in January would be to keep a food diary. If she keeps a note of what she has eaten and also notes when she has a flair up (this can mean anything from a loose bowel to the extreme cramps that you mention) it can help identify 'trigger foods' which she can then manage within her diet. I say manage rather than eliminate as I find if I am feeling well I can still incorporate some of them into my diet, but if I know my body isn't quite right I avoid them.

As I said, everyone is different, but common triggers would be spicy, greasy or high fibre foods, caffeine, so tea/coffee, fruit/veg with skins, so tomatoes, apples for example. Nuts (my personal nemesis!) broccoli. That's about all I can think of, but if you google it you will probably get more examples. Stress can also be a trigger.

In terms of diagnosis/treatment, again this can differ between people and it can take a bit of experimentation to find a treatment plan that works. Don't hold back when describing the symptoms to the consultant, the more detail they have to work with the better they can advise. It probably took the best part of 2 years for me to get on to a plan that works properly for me, but I could have sorted it sooner if I hadn't been stubborn about trying "the big guns" (as my consultant describes them). I was reading about the symptoms of posters on here and thought mine were mild in comparison, so wanted to keep the stronger stuff for if my condition deteriorated in the future. After finally taking the consultants advice I'm in a much better place and life has been back to normal for over a year at this stage.

essgee268

I have a Question for fellow posters. I have Crohns for the last 8 years I am reasonable for the last while but there is something I notice last night is that the last 3 fish Meals iv had has caused me to become very acidity and Crampy. Would it be possible that I have become Seafood intolerant?
Has any one else anything Similar?

Turtwig

Hope everyone is keeping relatively well,

Shalalala, hope your friend and her family are doing much better.

Tatran,

Sorry to hear your wife was diagnosed with Crohns. The first and most obvious thing to point is that all illnesses vary. Only time is going to tell how bad or good it's gonna be for your wife. Hopefully its effects will be nonexistent. As Northern Monkey said a diary is a darn good suggestion. Try to identity foods and stuff that make symptoms worse. This is far easier said than done though.An example from personal experience, after one flare-up I couldn't eat banana, took me ages to realise it as I'd it marked as 'safe', then fast forward 2 years banana is ok and orange juice is a huge problem. Orange juice was perfectly fine before.

Your wife is probably going to find herself tired a lot easier from now on. Hopefully not, but with Crohn's fatigue is incredibly common. It's also invisible. Most people who've never experienced it will find it difficult to relate to. Kind of like explaining what skydiving feels like to someone who's never skydived before. You can get an appreciative explanation of it but until you actually experience it it can be incredibly hard to intuitively to relate with.

There are some generalities they recommend to new crohnsies.
Exercise,
Low residue diet,
Stress and anxiety management,

To name a few. None of these are a panacea. Depending on her discomfort, your wife may actually want to thump me for suggesting exercise. Low residue diet is a diet that tries to avoid all foods that would make the intestines work vigorously while breaking down foods. Mostly stuff high in fibre content. It's generally not recommended for long term use because key nutrients the body needs are missing. Getting adequate nutrition is hard enough with crohns, as the body may not correctly absorb nutrients from food. Finding a diet that works is bloody hard. After each flare the process may have to begin a bit anew too. The key, as it seems to be with everything, is keeping patience and not losing heart. Far easier said than done. There's a lot of trial and error involved and very often 'error' can be some pretty unpleasant consequences .
I guess if you can take anything from this post it's that your wife may need to vent a little bit more now than before. It's impossible to say what you can expect beyond generalities, which can often be unfair on the individual involved. There may be days where your wife isn't capable of much, others where she's full of life. Or, there may be none of these things at all. Only time will tell and I hope ye handle it is as proactively and positively as is reasonably possible.


Essgee,

We can't give medical advice. You could be seafood intolerant or you might or might not be a gazillion other things. Either way it does seem like currently fish, or at least the ones you ate, are a discomfort food. After a flare-up or when I feel one potentially brewing I can't touch fish. But I'm sure there's another Crohnsies that can. An example of this thread is Maize. I'm mostly fine with it. Conductor might actually be plotting my gruesomely sadistic maize filled murder just for mentioning it. Nah! That'd be too nice, he wouldn't actually kill me. :eek:

uck51js9zml2yt

Thanks for the replies. She has good and bad days. The cramp and diarrhoea are the worst.
Unfortunately staying in bed due to tiredness isn't an option with 2 young kids.
She's keeping a food diary and one day something is fine the next it's a no go.
Waiting on an appointment for the mater, hopefully in January so well have to wait for that.
The good news is that her blood work came back fine. So no depletion in iron, b12, folic acid or calcium.
Her cholesterol levels are even down on last year.

essgee268

I have an annul check up tomorrow and I had a look at my blood test results and there only seems to be one out of range and that is RDW at 14.3 I am on 150mg of Imuran for over 2 years. I wonder what does RDW mean and what is the range

The_Conductor

In your blood- the red blood cells always vary in size. The RDW test- is a measure of this variance. A 'normal' value for an average person walking down the street- might be somewhere between 11.5 and 15%.

If you're anaemic- which most of us with Crohn's tend to be- your MCV is normally used in conjunction with this (MCV is mean corpsular volume) to try and get an indication of what the cause of the anaemia might be.

Even if your values are in normal ranges- you should still talk to your haematologist- as other values may be out of sync (for example Vit D is often an issue with us, as would be B12 etc etc). You need to get some good broadspectrum blood tests done- someone with Crohn's would normally get different tests than someone who randomly wanders in off the street........

Northern Monkey

Has anyone on humira had any issues with joint pain? The last 6 weeks or so I've noticed my knees and ankles getting sore. It was a dull pain originally, but it's got quite pronounced in the last week or so.

OUTDOORLASS

I have actually. I did.nt think of the Humira. I.m in the process of enlarging my rings, as I cant get them on/off over my knuckles. Interesting...

Turtwig

Northern Monkey wrote: »

Has anyone on humira had any issues with joint pain? The last 6 weeks or so I've noticed my knees and ankles getting sore. It was a dull pain originally, but it's got quite pronounced in the last week or so.

I found since the imuran - and definitely since the TNF inhibitors - that my joints are far more sensitive to impacts. I don't intend on running a marathon. :pac:
(Not that I uh ever did.)

It could of course be coincidental as crohn's is known to cause pain in the joints and when your stomach's cramping like mad the other stuff is less noticeable. I did have joints pains before diagnosis but I think the immunosuppressors have made them far more sensitive. That may be just me.

Take it with a pinch of salt. Definitely mention your concerns to your GP and consultant.

Northern Monkey

Not that you should ever google a medical symptom, but there seems to be more than a few hits for "drug induced lupus" while on humira. I've changed my shoes to a more supportive pair to see if that helps me, but if not I guess its off for more prodding.

Turtwig

As long as you're the one doing the googling and aware of it's limitations. When it's a family member or relative it's bloody annoying! :mad:

I actually hold back on symptoms descriptions now. Dr Google you're an ass for causing disproportionate anxiety!

OUTDOORLASS

Yea, if you went into sites mentioning the side effects of Humira, and took it all on board, you would get a massive heart attack....!!!
But I rationalise this information by saying, if you read up on the side effects of Paracetamol it would scare you too....

Maybe it is just a bit of old age as well....

Northern Monkey

I work with someone and the first thing they do when they are prescribed something is google the side effects. They will "develop" most of them within an hour of reading them.

Turtwig

There's a condition called medical student syndrome. Basically, when they're studying a disease for the first time they've a tendency to notice their own "symptoms" of it. Imagine, what it's like for a lay person reading up on medical stuff for the first time!

Everything from the common banana to peanuts causes side effects. Most important thing isn't to look at what the side effects of some therapy are, look at the odds on getting those side effects and decide on whether the potential reward is worth the risk.
(Although there are safe guards in place to prevent misinformation, it's probably best to get those odds from scientific sources that aren't anyway linked to the therapy provider e.g cochrane collaboration. )

Trebor176

Hello everyone. I'm a first time poster here, and just recently came across this forum. I was first diagnosed in 2008, having felt unwell for a couple of months prior, such as having a loss of appetite and feeling sick after eating a certain amount. At the time, I put it down to nerves over upcoming exams. It was only one morning I got up and felt very faint. After a trip to my GP, I was sent to A & E, where I spent the few days undergoing this test and that test. Following a colonoscopy, I was diagnosed with Crohn's.

I never really felt too bad and wasn't in agony, nor did I have any other usual symptoms, such as diarrhoea, or passing blood. It was more just the loss of appetite and weight loss. The only agony I had been in for a while was from juvenile arthritis in my legs (well under control now). And, from what I've learned, both Crohn's and arthritis can be linked. I did suffer with stomach pains during my early-mid teens (moreso these periods), which may or may not have been Crohn's related. I always had a tendency to worry, which most likely triggered them.

Almost seven years on since my diagnosis, and I've been pretty much fine, and the doctors have been usually happy with me and whatever tests, such as blood tests, I'd have to get done before appointments. It's only in recent weeks that I've developed fissures or something, which makes it painful going to the loo. And, there's often traces of blood or I pass a good bit of blood. Again, I never suffer with diarrhoea, but there are times when it can be hard to go. I have passed blood the odd time over recent years, but I've had a few incidents of that in recent weeks. I am concerned, but I know it's the norm for Crohn's sufferers. It just seems strange to develop these symptoms after being fine for so long.

I have written to the hospital, due to a lengthy wait for a colonoscopy, which should really have been a couple of months after my previous hospital appointment last summer. Coincidently, having wondered what the story is about it, and explaining my symptoms, I did get a letter to see if I still need to get the procedure done, so now I just have to wait for word back. I don't mind getting it done, but I am really not looking forward to the prep. I had to drink it when I was in hospital the few years ago, and really, it is the most horrendous thing to drink. It's just so hard to drink the suggested three litres, and everyone that has to take it must feel the same.

Anyway, I just thought I'd get on board here and just share my story with the posters here. I know that it will be great to be able to share our experiences with one another, and offer one another advice, when possible. All we can do is fight on and not let the Crohn's take over, even if it is hard to do at times.

Deadwards.com

Hi all,

Anyone else here using Mercaptopurine (I think it's also known as 6MP). I couldn't stomach Imuran so was given this instead. Just wondering if I am the only one on it and how people are finding it.