Crohn's Disease

jennytightlips

ive been diagnosed with crohns back in 2004 and currently im taking 2g of pentasa twice daily and 100mg sr tramadol twice daily for the pain <snip>


sorry, jenny, we cant offer advice on medications.

discuss it with your doctor

patnor1011

patnor1011 wrote: »

Dont know where to start but I need to spit all out as I am really depressed now.
All start about year ago. I start to go to toilet more often and I developed piles. I have found one size of pea - prolapsed - it means it stayed out all the time. My stool was more often watery like. This march my piles get so bad that I was barely walking, forget about pick up something from floor and one cant imagine how you need to sit when you cant to sit. /I am still sitting with one leg under other to prevent from pain/.

I went to see doctor. He gave me different ointments but nothing worked so in march he send letter to hospital to surgical dept. I was waiting 2 months to get appointment in another month. I went to surgical dept and talk to consultant there. He didnt even look at them he only said that that I need colonoscopy to have done and then we see. I was waiting another month gthen went to my GP to ask for help with that colonoscopy and got term in 2 weeks time. This was in sept.

That cleaning before colonoscopy is bad not to say when you have hemmorhoids I had 4 at that time - prolapsed 2 of them pea size and 2 of them 3 times bigger and probably few more internal ones. I was in excrutiating pain every time when on toilet even when my stool was watery like. I was going to toilet 5-7 times daily when I had good day more that 10 times when it was bad. I dont need to mention that this start to affect my work too. Eventually I have found that I have most pain when drinking black caffe with milk, cabbage, aples, pears, spicey food... I have asked all doctors which I went to see about diet all answer was to observe and do not eat what is bad for you. It is very hard as sometimes you will eat 3-4 things and start feeling bad without knowing what exactly caused pain. I think that I am optimist and want to fight but now I am in stage when I dont know what to eat and even when I am starving when Ill start to eat I am eating childlike portions and feel stuffed.

To continue my sad story - I went to colonoscopy. I was little bit afraid but it wasnt that bad. After colonoscopy doctor said that all my bowel and colon is inflamed and that they took few samples. God I could feel that particular places where they took samples about 2 weeks. He gave me Asacolon 2x400 twice daily. I also got Klacid from my GP as I was feeling bad and my piles hurt more than before.... This happened at end of august. My situation slightly improved as I was not in that much of pain. Then I got the phone call that my results are in and I can came in to see consultant. I consider myself fairly strong man /well from march 09 till sept 09 so in 6 months I have went down from 84kg to 64kg I have lost 20% of body weight/ I nearly fainted on hospital corridor floor as I didnt know what am I going to hear. You know all that bowel, colon, rectal cancer and so...
Finally when I went in consultant was in shock when he saw how I am looking. OK - my results came in with high possibility of Crohn disease. He asid that he cant do anything and that he is sending my file to specialist for urgent admission. Well that sounds funny as I am waiting another month for appointment and begging my GP to try to move things faster.

Another thing is that I am angry like devil for what happened last month. I was on Asacolon and still I am. I got prescription for month dose of 400mg two has to be taken two times daily. Next prescription and I got 800mg tablets. It is partially my fault too that I did not check them properly but if you are sick and not well sh*t happens. Long story short I was taking double dose of Asacolon for about 10 days. I noticed that I have more stomach cramps, more severe pain, I was more tired - weak, my nails were orange-coloured that disappeared when I wash them in the morning. I nearly killed- overdosed myself with medicine which was given to help me... I dont know who changed strenght of my tablets if that was GP or pharmacy it doesnt matter now as I can be partially blamed for that too. I am third day on one 800mg tablet twice daily and my stomach cramps are not that severe say once a day.
I still dont know what to eat as I have piles too so I need to maintain my stool soft otherwise I will be in giving birth like pain every time when I go to jacks and that is about 5-6 times daily and say one time in night.
To make things worse kids got something in school and I have temperature now, sore throat, sneezing, full nose, headache and got antibiotics again. Well when I read leaflet which is about Asacolon it says that patients when starting course and specially those with asthma have to be closely monitored I feel like lost in system as I am on them second month and no word from nobody...

I will appreciate any suggestions about diet as info on internet is confusing when one site say eat this and other one is against that particular type of food. I know that this can be different in everyone but Jaysus I am starving now with full fridge of food becouse I am afraid to eat...
Thanks Pat

Ok, little update. I was in outpatients in dec09 when consultent saw me and took my blood. That blood probably got lost somewhere. I nearly died in jan10. I went to a&e one monday morning when my pain was unbearable and in operating theatre next morning. I had an abscess. Well it was so big - they drained 600ml of &^%& from inside on tuesday so they decided to operate me again in thursday. They found that I have fistula and that abscess cavity will not heal so they operate me again on monday - illeostomy. Here I am now with bag but feeling much better, I gained weight back again I can sit - I was not able to sit properly for about 10 months. I am on Humira and steroids but only two 5mg and hopefully I will be off them soon. I am waiting for another operation to reverse illeostomy but it might be in 3-6 months.

The_Conductor

patnor1011 wrote: »

Ok, little update. I was in outpatients in dec09 when consultent saw me and took my blood. That blood probably got lost somewhere. I nearly died in jan10. I went to a&e one monday morning when my pain was unbearable and in operating theatre next morning. I had an abscess. Well it was so big - they drained 600ml of &^%& from inside on tuesday so they decided to operate me again in thursday. They found that I have fistula and that abscess cavity will not heal so they operate me again on monday - illeostomy. Here I am now with bag but feeling much better, I gained weight back again I can sit - I was not able to sit properly for about 10 months. I am on Humira and steroids but only two 5mg and hopefully I will be off them soon. I am waiting for another operation to reverse illeostomy but it might be in 3-6 months.

You've really been through the wars. I'm not familiar with the various ins and outs of absesses- but that sounds gigantic. I'm glad you're feeling much better now- when you have Crohn's- you really live for the good days.

kildareash

Hi Patnor,
You really have been through the wars over the last year.
My OH has had multiple abscesses and developed two fistulas since his ileostomy surgery last June. They are nasty little so and so's. They just move everything out of their way to make room for thier sacs.

In 2008 He also had fistulas, that were initially diagnosed as piles.

Anyway, just wanted to say that we kinda know what you've been through/going through.
You've had alot to deal with in relatively short period of time.

We found the ileostomy association to be a great help...thier online forum is great to. Lots of hints and tips and other people's personal experience.

patnor1011

yeah thanks. illeostomy was bad few first days. i was mentally ill everytime when i was changing bag. just the tought of it that piece of your intestines is sticking out... however practice kicked in and now i am doing it in a matter of minutes instead nearly hour...:) my crohns was associated with constant tiredness, feeling cold sitting in front of fireplace, pouring nearly boiling watter on me in shower for 20 minutes and could not heat myself, and pain just under rib cage on left site or on very bottom of belly. all that is gone now, i am eating pretty much everything just avoiding cabbage, most of vegetables and spicy things. what bothers me is that I cant really say if i have diarrhoea becouse of bag. I dont know how many times i am on toilet

I am little bit afraid that abscess can be back as that one operated twice in january was a pint of "*&T&%" so it must have been pretty big. in fact i was asked for permission fo take few pictures for some medical magazine which i kindly gave to them. my back side is probably famous now

I have found steroids little bit annoying too as i cant stop eating, i was sweating a lot and i have acne on chest and face. but i am glad that i am alive as that operation in january was life saving literally as i was collapsing from poisoning. my white cells were 3x normal and i take coctail of three different antibiotics for 14 days intraven.

I wish that all of people suffering with this nasty diseases a lot of strenght. This things can affect your family life and thank god for my wife she was with me all time and took perfect care about me and helped me a lot. My kids now have fun when i am changing bag If there is somebody in around limerick and want to talk about this or exchange experience or tips I am up for it. I wish you all all the best. Pat

kildareash

It's a lot to come to terms with alright.
Because of the abscesses and fistula my OH spent from June till Xmas in hospital. He was only at home for 10 days after the op.
So, he's only starting to come to terms with it now. While he was in hospital the SCN came round a couple of times a week to change his appliance.

Although his bag has only leaked a couple of times at nght, he has a terrible fear of leaving the house incase he had a leak. But were working through it.

Richard Dower

Hey guys!....guess where i am typing this post from?....medical ward Limerick regional :-)
God bless Netbook and mobile broadband :-)

Basically, major flare up....after 9 years free of Mr. Crohn's...i was only discharged on the 10th, back into A&E on the 12th and we're six days into my new admission. Within two days my levels shoot through the roof!

CT confirmed inflamation + narrowing of the bowel, surgeon hinted at danger of fistula connection to the stomach :-(

I'm OK as i post, i start Humira on Monday....i've never taken this drug before, any end user opinions on it?, i've been on Imuran for years. If you guys remember my other posts i talked about how i feared getting sick again and not being able to cope?

Well, i'm doing better then i thought i would, i thought i'd freak out or get panic attacks....touch wood i feel pretty calm thus far, they tell me i'll be discharged mid week, as long as nothing sinister like abcess or fistula/surgery i think i can deal wih this latest bout, 9 years in the clear is pretty good i think :=)

Hey, i might do a daily blog, live from my hospital bed........ :-)

patnor1011

Hi Richard, I am on Humira say about 3 months. That injection is little bit painful for 10 seconds but after few weeks you will get used to it and it is less and less painfull. I am not able to inject myself so my wife is doing that for me. I have that every two weeks one injection. I found unbearable to inject that to stomach so I have them injected into leg instead. I think that I can say that it kicked in pretty fast and I have no problem with crohn only when I "mistakenly" eat something spicy like indian food.

CathyMoran

Smccarrick had an adorable little baby 16 days ago - father and son doing well (if tired) - I know that my husband had to watch his meds before concieving our little one but the result was worth it.

kildareash

CathyMoran wrote: »

Smccarrick had an adorable little baby 16 days ago - father and son doing well (if tired) - I know that my husband had to watch his meds before concieving our little one but the result was worth it.

Aw congratulations guys, hope mum is doing well too.

Hope things improved for you, Richard, over the weekend. Let us know how things are.

Richard Dower

Bit of an update, consultant says a deffinate large mass on CT, and the formation of an abcess in the early stages. Bit freaked out about that, i'm on IV antibiotics and 4 grams of Pentasa.

No Humira today, tomorrow i think....thing is, when i heard the news about the formation of the abcess in my brain i was freaking out!....but my consultant was cool as ice, like no big deal.

Bloody big deal to me!, gonna have to have a chat tomorrow about that, fistula/abcess....bad news.

LucyBliss

Congrats to the proud parents! That's fantastic news.

Yikes, Richard, you're not doing anything by halves, are you?! Nine years is a great amount of time between flares. I made it eight years between my last two last flare-ups.
Please do continue to let us know how things are going with you.

kildareash

Richard Dower wrote: »

Bit of an update, consultant says a deffinate large mass on CT, and the formation of an abcess in the early stages. Bit freaked out about that, i'm on IV antibiotics and 4 grams of Pentasa.

No Humira today, tomorrow i think....thing is, when i heard the news about the formation of the abcess in my brain i was freaking out!....but my consultant was cool as ice, like no big deal.

Bloody big deal to me!, gonna have to have a chat tomorrow about that, fistula/abcess....bad news.

Hopefully the abcess can be easily accessed and the will be able to put a drain in.

It's amazing how doctors can deliver such news so blasé.....ok, so they've seen it thousands of times, but of course it's all new to you.

Hope things start to look up for you in the coming days.

Richard Dower

^ thanks guys.....got my Humira today, 160mg....4 of those pen injections. First one was mad sting!, but i did the other three injections myself :-)

So far so good, no adverse reactions thus far....so they monitor me for the next two days and home on Thursday. 2 weeks time i get a second dose of 80mg with a further 40mg as per consultant advice.

Hopefully nothing sinister will happen, overall i feel ok, i guess my isssue i trip back on bad experiences and think the worst, but i have to stay positive....i'm sure you all understand why :-)

Richard Dower

Heys guys....posting another update, after 11 days in the Limerick regional....i'm home :-)
I feel ok, apetite is normal....maybe a bit more hungry then usual. Humira two days in, i take another 80mg dose in two weeks.

Apparently some rep. from Abbot is coming to see me to show me how to inject the pens, but i've done 3 and feel OK about doing it. Saw the dietitian today and she advised a low residue diet.

I'd appreciate any diet advice and what foods are low residue, i NEED to avoid a bowel obstruction as my intestine is narrowed, need to maintain weight.

I think overall my hospital experience wasn't too bad, but besides an inflamed mass i was ok, i just need to keep this flare up in check and not let things get worse.

lizabbey7

I have been on humira now for 16 mths without a problem, did take 6mths for me to really see the benefits so I was still on steroids, at present i take immuran & humira, 2 weeks ago I got a viral infection so I have had an injection in 3 weeks, the viral infection seems to be gone but I have very bad aches & pains that I never had before, my hands and feet especially I cant even button or zip up a pair of trousers its that bad, has anyone else experienced this due to missing injections??? have contacted humira and I am waiting to hear back from consultant....if anyone has experienced this I would gratefully appreciate any innsight.....

Ush1

Just a question on people who have seen pics of there colonscopy. Mine didn't look badly ulcerated, just very red and inflammed. How did yours look?

CathyMoran

My husband (smccarrick, he has had crohns for a long time) is getting an endoscopy this morning - am worried about him and missing him (cant be with him as am minding our 22 day old son)...I totally trust the person doing the scope but they scare me (I have good reason)...will be glad to get him home safe.

LucyBliss

Best of luck to smccarrick with the endoscopy. And wishing speedy recoveries to everyone else who's feeling poorly at the moment. Sorry I don't have any answers to the questions posed lately but I hope you get sorted soon.

Colmm23

Hey Cathy,

first of all congratulations on the birth of your son, hope all is well.
Secondly I'm sure Shane will be fine, once he doesn't try doing what I was at for the last one and keep trying to turn around to see the screen while the camera was down, doc wasn't to happy but shur I dont even remember it.:D

Regards
Colm

Richard Dower

What causes Crohn's?....i had a few teams of medical students asking me questions about Crohn's etc., they asked me what caused the new flare up after 9 years.

I told them i belive that flare ups are not caused or created, as in stress or psych factors.....that it just happens, i belive that. Otherwise you're on the slippery slope of "it's all in your head".

Does stress and psychological factors contribute and make a active flare up worse....yes, but you can say that for ANY medical condition. It annoys me that medical types and even family members think it's all in your brain.

That your brain is powerful enough, or your emotions are strong enough to say cause massive inflamation in your intenstine, create an abcess, your blood levels shoot through the roof!

Wow!, the mind must be really powerful if that's the case....i call BS on that logic, it's a cop out to even suggest such a thing, it makes Crohn's less a real medical condition and more psychiatric in nature....which is wrong!

Again, flare ups just HAPPEN....they are not created or conjured up in the mind, we all get stressed, we all have hectic lives.....does EVERYONE have Crohn's?.....no!

Was i overly stressed or upset in the last six weeks?...no, no more then usual, i can't explain why Mr. C kicked off again, but no way am *I* gonna be blamed for it.

I accept that being depressed or stressed DURING a flare up can make you more ill, but many people experience psychosymatic symptoms.

So if anyone tells you "it's all in your head" you tell them to SHUT THE F*CK UP!!

:-)

The_Conductor

Crohn's sufferers often are labelled as being psychiatric by some people- who often don't appreciate the nature of the disease. It used to be incredibly difficult to get a diagnosis of Crohn's Disease (times are changing thankfully, but its still difficult). Often when you're in incredible pain- on an ongoing basis- and numerous doctors haven't found a reason for your pain- you get labelled as a psychiatric case, rather than a medical case. I was sent to a psychologist for 2 years- and made feel that I had psychiatric issues, that it was all in my head- the fact that I couldn't keep food down and was skin and bone was entirely in my own head and if I didn't cop on that I'd be sectioned.......

Psychiatric conditions are no less medically real than other medical conditions- there is a massive issue in Crohn's Disease though, where patients are very often labelled as having psychiatric conditions (of one type or another- severe anorexia being a favourite often)- where all they need is medical intervention (of one type or another).

In my own case- had I received proper tests and diagnosis- it would have saved me 11 years of excrutiating pain. By the time I was eventually diagnosed- I had in fact developed psychiatric conditions- most notably suicidal tendencies, purely as a result of my interactions with psychologists. I had lost all hope of ever managing a day without pain, and saw myself as some sort of a freak- being diagnosed was actually a relief, and the subsequent medication has allowed me to live a semi normal life- I'm able to work fulltime (in a low stress job), I can drive without having to show a seatbelt waiver, I managed to finish college without missing too many lectures- and get my degrees and postgrad qualifications, I managed to travel to far flung places and work with people I'd only ever seen on TV......

In Ireland in particular- Crohn's Disease very often is associated with various psychiatric conditions- wholly in the wrong. This doesn't however belittle those psychiatric conditions- nor the reality of living with Crohn's Disease.

wild_swan

shane & richard - totally agree with you both. I was also labelled as having psychiatric problems - when in fact I really needed my crohn's to be treated. its a pity that this still goes on with doctors today. I think they do this moreso with the patients who have more severe disease, well it was in my case anyway that the drs in question didnt seem to be able to cope with my disease. It got to the point I hated going to the dr with my symptoms - i nearly had a phobia about drs!!. from day 1, even when i was diagnosed every now & again someone would come up with the 'bright' idea when i wouldnt get better that it was in my head - i was even told i was depressed when my iron levels were 3 - like i could create that one in my head! on one occasion i was asked by the psych team why i appeared to be shakey - this was after having 9 bowel motions in 1 hour & given no treatment for - any wonder! i'm unfortunate in that my inflammatory markers dont really elevate despite severe ulcers - so that added to my 'in my head' diagnoses! i'm not being smart about this but sometimes it might be the doctor that has the problem coping & not the patient - i think some of them cant handle the fact they cant deal with some patients who dont respond to treatment as quickly as they like, its like you show them as a failure & they cant handle it - just my thoughts!! thanks for sharing - its good to know i wasn't the only one treated this way!

000sparks000

Hey Guys & Girls

I just thought I'd post here and keep track of the discussions. Give some advice, trade war stories, whatever!:D

Diagnosed with Crohns in 2000, was very ill, pain, weight loss etc until one weekend I could not keep food down at all. It was the start of a blockage.

Came in via ER, was operated on, removing some of my small & large bowel. 2 months recovery, felt and looked like a new man. Then about a year after surgery I started to get fistula. I developed fistulising crohns in my rectum, I needed to have that cut out three times, any more and I would have lost control..... stoma time!

So went onto Remicade, never looked back. Been on it now about 6 years, no side effects and no crohns issues.

Mark

Richard Dower

The one thing Crohn's taught me is....doctors are NOT above me or superhuman, they just aquired medical knowledge and studied. If i wanted *I* could acheive that level of knowledge.

In fact many health professionals have been amazed at my level of knowledge, i speak to them in "their" langauge, as in i understand medical terminology and speak to them that way. Over the years i'm earmarked as an "interesting case", the various teams send the junior members down or students to talk about my medical history and Crohn's experience.

I'm happy to do it, to educate these doctors, maybe my experience will help another patient or allow them to diagnose someone else early and save them the pain i went through.

I agree that senior doctors, registars and consultants can have an ego, but they eventually learn i'm too strong and savvy to get talked to like a moron. My advice to anyone is fight your corner....if you feel something is wrong tell them, you know your body better then anyone!

Richard Dower

Of note, what inflamatory markers are the ones to look out for in Crohn's?...in my case it's ESR, please note....ESR's are not generally performed, but i always ask/insist they do the test as it's the only real indicator that show up.

FBC...what other tests do they do?

The_Conductor

One they use occasionally is D-Dymers (its also the one used when they're checking for blood clots).

kildareash

Richard Dower wrote: »

I agree that senior doctors, registars and consultants can have an ego, but they eventually learn i'm too strong and savvy to get talked to like a moron. My advice to anyone is fight your corner....if you feel something is wrong tell them, you know your body better then anyone!

My OH's doctors have actually said to him that because his symptoms don't present the same way as everyone elses, that they actually have to listen to him when he says he feels a certain way and not just base thier diagnosis on test results and machines.

E.G....he feels warmer than everyone else, asks for windows to be opened, heating turned off etc, we know that within a day or two he will have spiked a temperature.

Each time he had an abscess, a day or two before docs diagnosed it, I would be able to tell them that something was going wrong. Because I listened to my OH and knew the signs.
Docs didn't believe me, until they actually seen it for themselves.

In fairness to surgical team in James' they pulled out all the stops to get him back on his feet. Didn't get the same "level of service" in local regional hospital. Surgical team now make him feel like he is their only patient in the hospital, which is how I think everyone should be treated.

LegacyUser

Hi
I was just wondering if it is possible to change consultants..has anyone ever done this? Im not happy with mine-the talking down thing, and also the conveyor belt feeling, in for 10 minutes... I just want my own case to be listened to and understood, no I dont have the same symptoms as others but isnt that why crohns is so individual. I fought so hard to be listened to in the first place and still feel like I have to fight for everything...which is hard to do when you feel like crap.!
Im public so would I have to wait all over again?? I waited over a year for my first appointment. And does anyone know how long the wait is in the main dublin hospitals for a colonoscopy, Im due to have another one and havent heard anything yet 4 months later?
Thanks

LucyBliss

My gut has always been the area that freaks out when I'm stressed or really bothered to the max, even before I was diagnosed with Crohns. So I would always do my utmost not to get stressed or I'd be running to the toilet by the new time when it came to work or exams. When I was assistant manager in a cinema, I was known as the calm manager who never stressed when things got freaky on a busy weekend but what the staff didn't know is that once everything was settled, I went into my office and screamed into my handbag for twenty minutes!!
I do think that my last super flare up was not helped by the pressure I was under at my job at that time, but it had been building up bit by bit until it got really bad.

I honestly can't remember what they used to count my inflammation markers but I do know that before I had my surgery, my markers were normal. Yet I was still in excrutiating pain and barely able to eat or leave the house.
I would also say that if I'm ever in that bad a flare up again, I hope I remember my lessons from this last one and not let the doctors keep me on medication that clearly isn't working because 'they want to give it a chance'. How long is a chance? Six weeks, six months, two years?? I know when my body isn't at 100%, I know when something isn't working. I mean, I could barely eat a slice a toast and was practically guaranteed an incontinence episode just letting the dog out in the garden. Never again. Nearly four years of my life spent almost housebound. Sometimes I feel very peeved about losing so much time.