Crohn's Disease

The_Conductor

Pocketfizz wrote: »

My sister was diagnosed with Crohn's disease this time last year. It awful to say that we nearly lost her to it she had to have a couple of different surgery's and by accident they took out half of her bowel, because of this she now has to get an injection every 3 months for the rest of her life as well as what she has been prescribed to. I hate seeing her struggle with it and I really feel for everyone in this thread.

I'm guessing the injection is Cytamen/Neocytamen- your sister should ask her GP to show her how to give the injection to herself- which will make life a lot easier for her (and save her 40 quid a visit to the GP!)

Regarding having had half her bowel removed- unfortunately with Crohn's very often the disease and its extent is only apparent once they commence surgery. The outside of the bowel walls can be totally diseased- all the while a colonoscopy shows up absolutely nothing. It really is a nasty condition. Because of the difficulty in diagnosing the extent of the disease- very often its only diagnosed after a person has been suffering from it for an extended period of time, and often the blood tests which might give an indication of Crohn's- can also be indicators of other possibilities (D-Dymers measuring the inflatory marker is a common test- but blood clots or even a bad bump can throw this off the scale).

There is life after the major surgery that Crohn's often requires. It does take time to recover- and of course the Crohn's is always with you and you have to be aware of it and how it affects you- but you can recover from the surgery and have a far better quality of life than you ever imagined possible before the surgical intervention (from a person who has had Crohn's related surgery 6 times thus far!!!)

Best of good luck to your sister.

geor

caramel08 wrote: »

hi,
I was diagnosed with crohn's when I was a teenager in the 90s and after a few years of trying everything that was available back then and changing doctors, i eventually found that Imuran worked for me. It doesn't work for everyone but I would encourage anyone suffering at the moment to give it a try if they can. It may not work for a few weeks or even months but I found after 3 months on it, it started to work. that was over 12 years ago now. If you're not happy with your doctor, change if you can. It's hard enough describing your symptoms to someone you know let alone to a total stranger. I would highly recommend the gastroenterologist in Beamount. If anyone would like his contact details, please PM me.
best of luck to everyone struggling with this horrible illness xxx

That's encouraging to know! 12 years on Imuran with no side effects?

cambronne

geor wrote: »

That's encouraging to know! 12 years on Imuran with no side effects?

36 yo first-time poster here.

I've had Crohn's for 15 years, numerous ops over that time have left me with an illeostomy. Generally, I'm in good health, just a couple of attacks each year. Since January, the attacks have got worse and more frequent so I've been presribed Imuren for the first time.

I'm due to start treatment next week, the same day as I start a new job. My question is this: is it wise to start Imuren at the same time or should I wait until I'm settled in the new position? The job is tough and will involve long days and a lot of travel.

Melis

Hi

Hi

I was diagnosed with Crohns disease in Aug 2007 after having my little boy. I suffered bad and take imurane, humira injection(once a week), calichew. I have had numerous CT scan, Barium Meal follow through, Colonospys and laporocopy.

I had a laporocopy last week and they found that the bowel is over leaping each other like a sleeve off a coat and there is a large polyp on the bowel too. I am going in to Hos in Oct to get the piece of the bowel removed and the polyp.

Has anyone had this op or similar done before and if so how are you/s.

Thanks

LucyBliss

cambronne wrote: »

36 yo first-time poster here.

I've had Crohn's for 15 years, numerous ops over that time have left me with an illeostomy. Generally, I'm in good health, just a couple of attacks each year. Since January, the attacks have got worse and more frequent so I've been presribed Imuren for the first time.

I'm due to start treatment next week, the same day as I start a new job. My question is this: is it wise to start Imuren at the same time or should I wait until I'm settled in the new position? The job is tough and will involve long days and a lot of travel.

I think everyone reacts differently to medication. But I started on Imuran back in 1996 when I had started working in my local cinema after college. I was doing long hours but the Imuran really helped subdue my symptoms and I had no side effects apart from getting a bad cold that winter. However regular doses of panadol kept me afloat so it was nothing too serious thankfully. I am still on Imuran and even though I had a bad flare up in 2004 that resulted in me getting a permanent illeostomy in 2008, the medication did sort out the inflammation. Unfortunately, my intestine was so scarred and narrowed after it that it was good for nothing and making me feel sick, even though my bloods came up fine. But I wasn't fine. I felt terrible, was in bad pain and had incontinence. I was very happy for them to take the bloody thing out.

Anyway, I would say that there is a good chance of you being perfectly okay starting work and Imuran. But ultimately, it's a choice you have to make for yourself. If you want to wait, then by all means. I think in situations like this, we can only be guided by other people's experiences. We have to do what's best for us in the long run.

L0lzm0nk3y

Heya!

I also suffer from crohns disease, but it is under control now luckily =D. I was diagnosed with it at about 7 years old and I am now coming 15 in November,about 2 years ago, I dont know I forget now xD.. I was put on an infusion treatment, where I am on the drip for about 2 hours with Imfliximab(something like that) being pumped into my veins, I usually get my treatment on a Friday in Dublin's Our Ladies Hospital for Sick Children, but my mum and I drive to Dublin from Donegal(where I live = /)which is a 4 hours drive and stay in the Red Cow Hotel, which is sweet but extremely exhausting and my ass hurts after it :L... the treatment has worked very well for me but I still get like 2 pains throughout the year which last for about 3 minutes at max but are very painful. I received a side effect from the treatment aswell, psoriasis or whatever on my scalp which crawls down on my forehead and can infect my eyes aswell, my ears have psoriasis on them, I have creams for this and I can give you the names of some that you don't need a prescription for if you need them. When I first got psoriasis my groin area was completely COVERED in it and i could hardly walk until i used the creams and cured it completely!! =J

Any questions you can ask me

Melis

Hi Ya

Gald your doing okay now! Its a horrible dis. I was diagnosed 3 yrs ago after having a baby going in next week to get piece of my bowel removed and am scared out of my mind can amyone that had this done tell me how you do be afterwards. I know I will be in hos for a week. Grrrrrrrr hate hos.

The_Conductor

Melis wrote: »

Hi Ya

Gald your doing okay now! Its a horrible dis. I was diagnosed 3 yrs ago after having a baby going in next week to get piece of my bowel removed and am scared out of my mind can amyone that had this done tell me how you do be afterwards. I know I will be in hos for a week. Grrrrrrrr hate hos.

It all depends on how things go.
Normally you would be on a soft (low residue) diet for about 2 weeks.
If you're doing well you may be allowed home before the week is up- my record for being allowed home was 2 days (though I also had a 3 week stint at one time). Having a positive attitude and getting up and about after the surgery are two big things you should focus on. One of the main reasons they keep you in is to make sure you're doing sufficient abdominal exercises and are not likely to get yourself into trouble with shallow breathing etc.

Best wishes,

Shane

Berty

Melis wrote: »

Hi Ya

Gald your doing okay now! Its a horrible dis. I was diagnosed 3 yrs ago after having a baby going in next week to get piece of my bowel removed and am scared out of my mind can amyone that had this done tell me how you do be afterwards. I know I will be in hos for a week. Grrrrrrrr hate hos.

Hello,

My OH had a Laparotomy a few weeks ago where she had 50cm of her small bowel and part of her large bowel removed. She is doing fine. There was another girl of the same age across from her(30) getting hers done too. She had 40cms and some of her bowel removed.

My OH was given a temporary ileostomy and the other girl was not. It could go either way.

My OH was always concerned it would be a disaster if she had one but weeks later she is comfortable(as much as she can be) with it and is managing fine.

She is, however, still in hospital. Currently she is in 7 weeks. She had a pevlic infection, reduced liver function on top of having major surgery.

Yesterday was the first day since the operation she was allowed out of the day and she HIT PENNYS PRETTY HARD!!

She was supposed to have an ultrasound today but lo and behold that never happened. Damn hospitals and consultants forgetting to book things. :mad:

I suggest you visit this website. It helped us both out.

https://www.c3life.com/ostomy/default.aspx

Watch the video about Laparotomys and it will answer some of your possible questions.

I cannot speak from personal experience only from being my OH's rock but you need to realise that this is a life changing experience. The pain you are feeling will be removed during the operation and, although it will be replaced swifly with a new temporary pain, your days will feel much better from here on.

My OH feels great each and every day and no longer curls up on the floor in pain from cramps etc.

Just keep telling yourself "This is a good thing"

CathyMoran

smccarrick wrote: »

It all depends on how things go.
Normally you would be on a soft (low residue) diet for about 2 weeks.
If you're doing well you may be allowed home before the week is up- my record for being allowed home was 2 days (though I also had a 3 week stint at one time). Having a positive attitude and getting up and about after the surgery are two big things you should focus on. One of the main reasons they keep you in is to make sure you're doing sufficient abdominal exercises and are not likely to get yourself into trouble with shallow breathing etc.

Best wishes,

Shane

You rang me within 2 hours of surgery one time - my husband is my hero! I think that having a positive mindset helps with the surgery, that and being stuborn! I had majot surgery for something else gastro related and have the scar down the tummy and a few others but having an understanding and loving partner really helps, he pushed me when I did not want to and I owe everything to him.

LucyBliss

I stayed a month in hospital after my panproctocolectomy because the wound reopened when they took the staples out after a week. But my healing power was gone to pot after being on steroids for so long. It took a while to start to close but because I lived near the hospital and was getting steadily more miserable, they let me home and within a week, it started to close. My mother reckons my body needed the rays from the TV, DVD player and laptop to heal properly.
It took me a couple of weeks to be able to walk about on my own afterwards. I remember being at home, my mother was at work and an aunt had come in to take care of my grandmother because I wasn't able to (and as soon as I was, all the relatives fecked off again but that's another story), and I wanted a ham sandwich but there was no ham. And I thought the hell with this and I got up and walked to the supermarket. After that, there was no stopping me. I will say that the first time I went out for lunch after the surgery, I sat there after eating and I realised that I was waiting for the familiar cramps and run to the toilet and there weren't any. And that was really when it dawned on me just how good it could be.

Yesterday I took my girl guide unit to Coole Park for a hike and cookout. The thought of that would have brought me out in a cold sweat a few years ago. These big surgeries are scary but they're just stepping stones to the life that we sometimes watch other people having. But it can be ours and we can go out and do things. It might take us a bit longer to get there with post op complications but that just makes it all the sweeter when we are back in the world because we fought hard to get to the point where we can do regular things without worrying about nearby toilets or whether that slice of toast is going to have us in the toilet all night.

Sorry to the tl;dr but I just feel it's important that, because so few people understand what having Crohns and UC can do to your head as well as your body, we do our best to keep ourselves and each other going through the bad times so that our headspace is good enough for us to enjoy life when we get back to it. These diseases take so much from us; I'm damned if I'm letting it take the small pleasures like sitting with a book in comfort or taking a walk with my dogs without worrying. The three and half years I was sick at home were hell on earth for me. But now I can look back and give it the finger and say "you got my intestine but you didn't get what makes me me!"

E.T.

Hi everyone, I'm looking for some advice for a relative who's in hospital at the moment. She's been diagnosed with ulcerative colitis for about 5 years now, on infliximab since then. This is her third time in hospital, each time she's been in a few weeks. Her first time in hospital was back in 2007 but she'd been doing really well since then. She started with a new consultant late last year and she was taken off the infliximab a few months ago. She's been in trouble since then and this is her second time in hospital in a month.

The other day the consultant said that she has to have surgery. At this stage they think she might have crohn's colitis because she's getting huge ulcers in her mouth and sores on her face too. She's resigned herself to the surgery but everyone keeps telling her to ask for a second opinion, just for peace of mind. She's a public patient. Has anyone done this successfully?

Another thing we'd really appreciate help with is some questions to ask the consultant and the surgeon. At the moment they can't tell her what type of surgery she'll be having or how she'll be having it, or even when. She was marked by the stoma nurse in case of emergency surgery already. Are there any questions that you think would be helpful to ask?

Thanks, E.T.

Clairsey

Hi all,

I'm a long time lurker so this is my first post.

I was diagnosed with Crohn's in 2007 after the usual array of horrible tests. It's pretty well managed at the moment. I had a nice remission period of about a year up to April this year but I've unfortunately had some flares since then. I'm on Imuran & Salazopyrin at the moment and have been for the last two years.

My major worry/dilemma is that I'm getting married next August & we're hoping to start a family pretty much straight away. However I've been reading some freaky research online about Imuran during pregnancy/breastfeeding. Obviously my consultant went through all the previous research on Imuran with me when she prescribed it but obviously it's all only really relevant to me now.

Also there's no research on long term effects as it's a relatively new drug, which also makes me very uncomfortable.

Any other Crohns sufferers who have continued taking Imuran etc throughout pregnancy?

Melis

Hi I was diagnosed wth Crohns 2 in Aug 2007 after giving birth to my son. I am going in this Thursday to get 20cm of my small bowel removed while pregnant the hormones my body produced triggered the crohns to flare up. I am on imuran 150mg per day and humira injections. I am getting married next May and have the same worry as yourself as all my little boy wants is a brother or sister. But, I got very sick after him and would be bit scared. This silly diesease takes over your whole bloody life.
My Dr said it not the imuran that he'd be worried about its if ya have a flare during preg. Imuran seems to be a Very strong drug I am on it 3 yrs and have had no side effects so far thanks god.
Maybe go speak to your doc before you start trying for a baby.

Best of Luck with your wedding plans it a exciting time.

pinkyc

hey guys! Im just wondering how everyone is lately? myself? Im really not doing too well, I used to get the infliximab but that was stopped in July to try the new injection humira. Sadly because Ive been waiting so long Im very sick every single day (even yesterday on my birthday) all Im doing everyday after college is sleeping its starting to really get to me too. and lately when i go to the bathroom theres blood which i know is not a good thing (obviously) as it happened before, but im just very fed up in myself lately because of the fact Ive had no medication besides imuran for the last few months. Im basically waiting on bloods to come back before i can start the humira but I would welcome it sooner rather than later. sorry for going on, but i feel I can talk to ppl about it here and maybe get some advice?

thanks guys

Berty

My OH was on Humira for a long time and so was her sister. Her sister(suffering also with Chrons) was a different story because she was gobbling down steroids like nobodies business.(stopped now - no choice).

I still have two Humira pens in the fridge right now. ANY OFFERS???

Her Humira went from one per week to two per week to two every two weeks to one every two weeks like a yo yo to "test her" but nothing good came of it.

The reason was because her consultant never bothered to do a CT scan and IF SHE DID she would have noticed the MASSIVE inflammation in her and advised an operation. It took us to admit her to hospital to find this out.

For some Humira will be an inhibitor and for some its too late and is only a stop gap between now and surgery.

My OH is coming home to me on Saturday( I HOPE ) after 8 weeks in hospital following her Laparotomy ( resulting in an ileostomy ).

SusieBoozie

Killer_banana wrote: »

I was just wondering about contraception and Crohn's disease. I've heard that the pill's not as affective as normal due to malabsorption problems so I'm looking into other methods. I'm thinking maybe the nuva ring or the patch? I've researched both, found pretty much nothing on the patch with Crohn's disease but found a good few things to do with the nuva ring. Mainly it's positive but heard it can aggravate Crohn's as well so just wondering if anyone here has any experience with either? Or if you use a different contraceptive method what's it like? Has anyone experienced any flare ups related to contraceptive? Basically any personal stories are helpful. Thanks.

Hey,i was on the patch for years!it works exactly the same way as the pill.id highly recommend the patch!you change it every week and take a break the 4th week.you put it either on your back or bum.you should give it a try.:)

The_Conductor

Started on Salazopyrine this morning- about the only thing I haven't been on before....... I've been informed it should alleviate joint pains. I feel like I'm falling apart......

CathyMoran

smccarrick wrote: »

Started on Salazopyrine this morning- about the only thing I haven't been on before....... I've been informed it should alleviate joint pains. I feel like I'm falling apart......

It might have something to do with having a 6 month old son too! Good luck with the tablets.

snowstreams

smccarrick wrote: »

Started on Salazopyrine this morning- about the only thing I haven't been on before....... I've been informed it should alleviate joint pains. I feel like I'm falling apart......

I started taking Salazopyrin 2 years ago. It took a month before it really made a difference to my AS joint pain.
But im pretty sure it helped my digestive system quicker.
Still i think a good dose of fish oils works better for me overall.

nerdysal

Well guys just when I think I'm getting a well earned break from the crohn's it threw a complete spanner in the works. Three weeks ago, I was making pancakes at home with my mother- it was 12pm Saturday. Then the next thing I know it was 7pm Sunday evening and I was lying in a bed in Loughlinstown hospital.
During this blackout it turns out I had a seizure and then proceeded to go into shock, hence why I can't remember anything. After much tests the doctors told my parents I had Hypocalcemia as a result of my Crohn's disease which is too little calcium in the blood. This happened because I had surgery three years ago and have a lot of problems with absorbing nutrients. I was treated with Calcium & Magnesium infusions eventually (apparently I was an absolute nightmare and I was fighting with them tooth & nail and wouldn't allow them to put in the canullas-usually I'm a model patient!!).
After a few days I was transferred to St. Vincents (where all my records are held). I had to take 6 magnesium sachets a day, 4 calcichew d3 forte tablets, Vit B12 injection a day... They tell me it's most unusual what happened and I was just wondering had anyone on the board ever experienced any like it? The symptoms in the run up to it are cramps in the legs, tingling in the face and experiencing pins & needles in the arms and legs at the slightest touch all of which I have suffered with for months on end.

But after all this I feel absolutely amazing! The best I've felt in years!! To think it all came down to something as simple as mineral & vitamin deficiencies!!!

The_Conductor

Sorry to hear that!
I've constant pins and needles everywhere- I've been told its peripheral nerve damage as a result of a lack of B12 as a child/teenager though.

Hope you get better soon,

Shane

nerdysal

I had assumed that it was that I needed more B12 injections. I had read an article in the health supplement with the Irish Times that low B12 can cause Pins & needles. So the Wednesday before it all happened I had got my B12 checked as I had an appointment the following week. My calcium levels were never checked because I'm not able to take steroids so they were never concerned with it!

The_Conductor

http://www.bbc.co.uk/news/health-11569602

Evidence is mounting that levels of vitamin B12 may be connected to the risk of developing Alzheimer's disease.

A study of 271 Finns found those with the highest levels were the least likely to be diagnosed with dementia.

However, an Alzheimer's charity said despite the findings, published in the journal Neurology, it was "too early" to think about taking supplements.

It called for more research into the protective power of vitamins such as B12 - found in meat, fish and eggs.

Vitamin B12 can also be found in milk and some fortified cereals.

Alzheimer's has been linked to B vitamins for some years, and scientists know that higher levels of a body chemical called homocysteine can raise the risk of both strokes and dementia.

Homocysteine levels can be lowered by increasing the amount of vitamin B12 in the blood.

A recent trial found that "brain shrinkage", which has been associated with Alzheimer's, was slowed in older people taking high doses of vitamins, including B12.

The volunteers for the latest study, carried out by scientists from the Karolinska Institute in Sweden, were all aged 65 to 79, and did not have dementia at the start of the study.

"It might be tempting at this stage to stock up the cupboard with B vitamin in the light of recent findings - it remains too early to do that at this stage”

Over the next seven years, 17 of them were diagnosed with the condition, and researchers were able to work out whether high or low levels of the active component of B12 had made any difference.

Again, those with high levels of homocysteine appeared to be at greater risk, and those with the highest levels of the vitamin appeared to be at lower risk.

Professor Helga Refsum, from the University of Oslo, another B-vitamin researcher, said that the study was "further evidence" that low levels of B12 were linked to Alzheimer's.

"Though relatively small, with few cases of dementia, it should act as another incentive to start a large scale trial with homocysteine-lowering therapy using B vitamins to see whether such a simple treatment may slow the development of Alzheimer's or other dementia."

Rebecca Wood, the chief executive of the Alzheimer's Research Trust, was cautious about the findings.

She said: "It might be tempting at this stage to stock up the cupboard with B vitamin in the light of recent findings - it remains too early to do that at this stage.

"The strongest evidence we have for reducing dementia risk is to eat a healthy, balanced diet, take moderate exercise, and keep cholesterol and blood pressure in check, particularly in mid-life."

A separate study offered some encouragement to those looking for future treatments for the disease.

A treatment to lower levels of a protein called "STEP" in mice bred to develop a condition similar to Alzheimer's disease appeared to reverse some of their memory and learning problems.

The Alzheimer's Research Trust said it was too soon to know whether a similar treatment might be viable in humans.

The_Conductor

All the more reason for us to ensure we keep up-to-date with our Cytamen shots......

Corruptedmorals

Had a capsule endoscopy done on Wednesday. Anyone else or just me? Seems to be fairly new here, wouldn't mind posting up my experience anyway if anyone's interested.

Berty

Corruptedmorals wrote: »

Had a capsule endoscopy done on Wednesday. Anyone else or just me? Seems to be fairly new here, wouldn't mind posting up my experience anyway if anyone's interested.

Im actually quite interested in reading about that. I just wikipedia'd it and it sounds less "intrusive" that a traditional "poke".

I imagine though the lack of control, i.e the way it points would be an issue.

Lets say the Surgeon/Doctor wants to look at one spot and get a better look and the fecking thing moves off down the intestine. They can hardly push on your abdomen to move it back.

We are off to meet the Surgeon again in November so I will ensure "herself" asks him as Im out of the country.

Im very intrigued.

They told my missus that she will have to be injected with some dye and if she leaks she is not ready for a laparotomy reversal and if she doesnt leak she is ready.

The Capsule could be helpful also. Thanks.

sjodonoghue100

Hi my name is Stephen O'Donoghue. I have just found this forum and it great for information and support . I too have Crohns and another condition called Ankylosing Spondylitis(AS) is a painful, progressive rheumatic disease. I am following the "Specific Carbohydrate Diet" by Elaine Gottschall. It cut out Grains, Dairy, Sugar and all complex carhohydrate bascially starving the bad bacteria in my gut. I am wondering if anyone is on this diet or if there are anyone else out there with both this conditions. As I do find it very rough going as I need to do a lot of excerise to cut down on pain with Ankylosing Spondylitis but this is impossible as I do find Crohns pain levels up every day. I just rest up after work and weekend just rest up again. I only been diagnosed 3 years ago with Chrons and 5 with AS.

Would anyone recommend trying a dietician?, as I hear mixed review and I am not sure..

Thanks in advance
Steve

To PINKYC
I finished off a BEng and MSc with conditions flaring so I know how rough it can be and it can be rough, you should tell you course leader and disability officer as I found them very understanding and great by getting extra time on course work or extra learning aid if needed. Best of luck!!

nerdysal

Hi Stephen!
For the first two years of being diagnosed I went through too many dieticians to count on one hand but then when I did the tube feed the senior dietician was assigned my case. She was amazing and she really worked with me to develop a diet that suited me. Sadly, she retired at the start of the summer . Finding a good dietician is very difficult and it's hard to find one that will really listen to you. For example, I remember going to one and saying that I couldn't eat fruit and she was like ah no sure you have to eat fruit you'll be grand. I went home & ate an apple and was in agony for days!! I'd say try find one with at least 10-15 years experience and one who deals with gastro problems!
Sara

sjodonoghue

Thanks Sara (nerdysal) for you reply. I think, I will brave it but I also tried a holistic dietician about a year ago and when through hell for months and months. No Fun!! hence my caution. I was wondering if any one could recommend a good dietician in Cork (City or surrounding area). It just seems that whenever I do to the Gastro Clinic in CUH that ever body else is doing much better with condition as I think you can read how much pain discomfort someone is in by there face, eyes etc..or maybe that just me... I had a CT abdominal scan, does anyone have experience with them and results..
I have had 3 colonscoply in the past 3 years and too many scope to count , barium follow through etc, but I think my main site of inflammation is in the ileum.as I remember one of colonscoply..

Thanks
Steve