Crohn's Disease

patnor1011

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

lip

God Pat,you have been through the mill.Its so frustrating when your'e in secere pain and don't know when you woll get seen.Why not go through A&E?Thats what I did,my GP said there was nothing else he could do as no painkillers were working for me and I was admitted.Now in saying that,all they did for me in there was give me the same meds as I was taking at home,I still had to wait 7 weeks for an EUA, I'm due to see surgeon on 28th,a month later,which isn't bad.
As for diet,as you said,everyone is different.I cannot eat fibre foods,so fruit,veg,brown bread ect are out.I have only lost 1.5st this time round,even though my appetite is gone,but its because I am steroids,but also I am eating lods of chocolate and biscuits.They seem to be the only things I can eat without suffering after.My advice would be to keep a food diary.Write down everything you eat and drink,and the time for a week.Keep a column for recording pain each day and write whether it was severe or mild.You might see links between certain things and the pain.
Good luck with everything.

patnor1011

thanks lip will do with that diary. at this moment after few months of hardship i have pretty good idea what not to eat...
did anyone try this?
http://www.fangocur.com/index.php?internallink=1160&sprache=2&PHPSESSID=&nostromo=0
or it is just waste of money...

The_Conductor

patnor1011 wrote: »

thanks lip will do with that diary. at this moment after few months of hardship i have pretty good idea what not to eat...
did anyone try this?
http://www.fangocur.com/index.php?internallink=1160&sprache=2&PHPSESSID=&nostromo=0
or it is just waste of money...

It looks like a clay based drink- which in theory would neutralise chemicals/metals that may be present in the gastrointestinal tract. A better known version- would be Kaolin- which would be commonly prescribed to people who may have inadvertantly (or delibertly) taken meds or chemicals detrimental to their health- as it can neutralise many of them.

I very much doubt it could do you any harm- but I'd question whether it would live up to any beneficial claims.

LegacyUser

Hi Pat,

First of all can I just say how I sorry I am to hear of your pain and overall treatment. You are not alone. I have had a very similar experience!!
I was told also that my case would be 'Urgent' but I did end up waiting 3 months for my first consultation, that's the way it is on the public system I'm afraid.
Like the previous poster suggested, go to the emergency room definitely as you sound like you are in an incredible amount of pain, don't wait around, that just sounds terrible,. Also get a good relationship going with your GP and finally join the Crohn's society or the Crohns group on facebook ...definitely worth posting on there, everyone is so helpful and you will be provided with support, advice and excellent information on Crohn's.
Take care Pat

oldsmiley

Hi.I was wondering if someone could help me with a few answers to my questions.
First of all i see from most posts that weight loss is a major problem.I don't have any weight loss more likely I'm about two stone overweight.Do you have to have weight loss to suffer from this problem.
My main problem is bowel movements.I always have very loose stools for the last number of years no matter what i eat.When I wake in the morning I just explode on the toilet( can't think of any other way of putting it).If I'm due in my office I only need to go once before I leave as long as I can beat the traffic.If I get stuck in traffic i could have major problems and have often had to run to the nearest toilet.At this stage i know every hotel toilet in county dublin and beyond.I thought that the problem was only on work days as I didn't have the same problem at the weekends.But lately things have changed,I have a lot of pain in my back passage and I don't really have control at weekends anymore,also a lot of blood on tissue paper.I went on holiday recently and everytime I was out I panicked if i did'nt know where a toilet was,then I would have to find one and go.I went to the match on sat and had to get off the Luas to find a toilet,this is the first time its happened at night.This morning I had to bring my son for a checkup in town and needed to use the toilet 8 times before I left the house.While driving into town I had to stop to go again and once I got there I had to go 2 more times and once when I got home.I'm now in work in a lot of pain and discomfort its wrecking my head to be honest.My wife thinks its my head but my brother has a bag fitted and his son also has problems and I can't help feeling that maybe i have problems too.What do I do next ? is really my question.A few years ago I went to the Doctor and he sent me to mount carmel for a camera job but they found no problems do I need to do this again or should I be getting in touch with a different Doctor/Hospital.I have also been in touch with a hypnotherapist has anyone any experience with this.Sorry for the rant but to be honest I'm a bit frightened and scared by this but i also feel that I would rather have a bag fitted than have it get any worse

LegacyUser

Hi Oldsmiley,

While we can't offer medical advice I would highly recommend you get a colonoscopy and an endoscopy, ask for both as with me i had ulcers in my stomach and my oesophagus. You shouldnt be running to the toilet like that so you definitely need to get it checked, get your doctor to refer you immediately. You may just have an allergy or intolerance but you should get the tests done.
I hope this helps,..oh I am overweight also and I have crohns:)

stickyviki

Hey guys.

Hope you are all keeping healthy.
I was just wondering if any of you's are claiming the disability welfare?
I have started the application process today, and was curious if any of you guys have been successful?

-Vicki

LegacyUser

Just in relation to Pat's message about Fangocur my mum bought it for me and I googled it to be on the safe side. It is supposed to cause terrible things like cancer and it is all over the internet not to touch it!!!

The_Conductor

Just had a gastrointestinal MRI follow through today. I was warned to be there before 8AM and that it would take 5-6 hours at very least for the dye to go through my system. I laughed, and asked, am I allowed take my regular morning Imodium- to which I was told not to take any medication at all- and no fluid after midnight. I warned the radiographer that she was in for a surprise- and sure enough they only got in 3 picture rounds before it had fully gone through my intestines- at 10AM- 2 hours later. Getting the IV dye was a different story- my veins are all collapsed from the cortisone- and both hands are now immobile from just above the wrists I've a lovely collection of bruises from abortive attempts to get lines in.

Vicki- I'm sure that anyone who is going through a flareup may be claiming Disability Allowance- but I'm not aware of anyone on longterm disability welfare (though I know only too well how Crohn's can limit your life). Normally treatment can restore your standard of living to a sufficient level that you can hold down a job- but it would be totally unreasonable to compare this standard of living with the health and wellbeing a 'normal' person would expect. I've had surgery 5 times- am arthritic and my dexa scan tomorrow is probably going to diagnose osteoporosis- and I do my damndest to hold down a fulltime job- I'm paranoid about taking sick leave- to the extent that I've less sick leave than anyone else in the whole office......

Far from qualifying for disability benefit- Crohn's despite being a lifelong condition- doesn't even qualify for the LTI medication scheme. The EUR100 a month contribution can in some cases be the straw that breaks the camels back (and its due to go up to EUR140 a month in January).

Do let us know how it goes for you.

LegacyUser

Hi Could anyone tell me is vomiting common in Crohn's disease? I have Crohns disease and have recently begun vomiting on and off?

The_Conductor

vomiting wrote: »

Hi Could anyone tell me is vomiting common in Crohn's disease? I have Crohns disease and have recently begun vomiting on and off?

When Crohn's affects the top part of the small intestine (Gastroduodenal Crohn's Disease) vomitting is very often one of the symptoms displayed. Its also very often misdiagnosed as a stomach ulcer...... Vomitting can also occur as a result of obstruction through narrowing of the small intestine gastrointestinal tract.

lip

Hi everyone.Been a long time since I was on here.When my flare ups start,I a;ways vomit,but normally just for 2 days,but thats 2 days straight,can't even drink water.I feel nausious quite a lot.
I have been on disability since the beginning of September.My pay from work ends this week,so I will be reliant on welfare til they get me sorted.It is the first time I have been out of work so long from Crohns,even when I had my op 10 years ago I was only out of work 10 weeks.
I got full medical card last week,after 2 years of fighting for it.Got it on medical grounds as our income is well over the threshold.Only got it for me,not my husband or children,but I'm happy with that.It saves me E100 a month,and gets the hospital off my back to settle the bill.
Hope your dexa scan goes ok.I had 1 months ago and was diagnosed with Osteopenia.Only 34,so God knows what I'll be like in 20 years.
Seen consultant last week,he said theres nothing more he can do for me,I am a medication failure.Its now in the hands of the surgeon.I will see him next week for results of EUA done and hopefully get a date for op.
Keep well.

The_Conductor

Sorry to hear it lip. To be honest- you're not a medical failure- the simple fact of the matter is surgery is one of the tools for controlling Crohn's Disease. I've had surgery 5 times at this stage, I'm not blasse about surgery by any means- but I do know that surgery can totally change your standard of living- don't be afraid to ask any questions you have of the surgeon though.

Thinking of you,

Shane

kildareash

I'm really sorry to hear that, lip.
My OH has been on disability for most of the year, i think he's only worked for four months this year. It's been quite a struggle, I don't know what we would have done if he didn't have a medical card or health insurance.

He's still in hospital 4 months after his first operation.
Does anyone have any experience with fistulas? He has one from his small bowel into his surgical wound. For whatever reason it doesn't seem to stay closed.
The first time it reopened, it was like he literally burst open. The stoma nurse said she had never seen anything so severe.
It's closed again now for the third time...so fingers crossed.
A CT scan last week did show up a little bit of inflammation in his small bowel just under the wound, he's having a scope today to see whether it's chrons related or just inflammed from all it's been through.
After the biopsy on his large bowel came back, they told us he had colitis, and even when he developed the fistula they still insisted it was colitis.

At this stage, he just wants to come home. But obviously until the fistula heals and he's back eating solid foods, that's not possible.

degrassinoel

this might sound a bit insensitive, but i really wouldnt get an operation on the grounds that something like that could happen, i wouldnt be able for it at all.
thank feck my crohn's is manageable at the moment.

bit off topic, but is anyone else out there completely mortified of surgery for this?
i was offered surgery as a last resort as the drugs they had me on made me ten times worse, big biscuit sized tablets, cant remember their name. But i was literally too afraid of going under the knife, from what i can gather there are some new drugs since i was last seeing anyone in beaumont hospital, i kind of gave up everything after i rejected the surgery. found my own diet that works sometimes, and just fast when i know i've eaten something that causes a flareup.
not saying anyone should try what i'm doing, what works for one person may not work for everyone. but i'm fairly okay with my weight, i lose it, and put it back on, though i am weakened from that and have lost a load of muscle in the last few years, still get the runs a good bit, like 3-4 times a week, sometimes none, vomitting only seems to happen with really bad flare-ups.
I can actually feel where i have the infection above my right hip, it gurgles and splutters (not farts lol) constantly, especially loud in the mornings and at night.. anyone else got that?

sorry for the rant again just a bit upset by the last few posts in this thread regarding surgery, maybe i just have a weak stomach as well as crohn's hehe

kildareash

I don't know as much about chrons as some of the other posters on here.
My OH has only been suffering for the last year, but he was a particularly chronic case and no medication seemed to work on him. Thankfully, you're able to manage yours.

We didn't know all this would happen, but I don't think it would have changed his mind about having the operation...he didn't really have a choice.
He cldn't leave the house things were so bad...no matter what he ate or didn't eat, the symptoms were still as severe. It still seems strange that he's not jumping up every five minutes to go to the loo now.
His choice was to live like that or have the operation....

Like every operation, major or minor, there are complications that can happen. Unfortunately for us, because his system was so weak going in for the operation his body didn't have any resistance to fight off any infections.

But thankfully, we're coming out the other side of it now.

I really do hope that you continue to be able to manage your chrons.

lip

Hi Shane.Thanks for that.Not worried about surgery really,at this stage,after 14months of pain,I would let them do anything.My husband is coming with me,so if I forget to ask something,he won't.What I really want to know now is when the op will be done,I need to get my life back,for my sake and my families.Only thing I'm really concerned about is that I will more than likely be left with a stoma,and its the social side of things that worries me.I know people with stomas lead normal lives,but I suppose I won't really believe it til I'm living it.

lip

Hi,again.Sorry,didn't realise there was another page of posts.
Kildareish,I have had a rectal-vaginal fistula for the past 6 years,this operation is to close it as well as remove the deseased area and resection.Had 1 closed 10 years ago when I had total colectomy.rry to hear your OH is still suffering after his surgery,sound like his type of fistula is causing him a lot of discomfort.Hope it stays closed this time,fingers crossed.
Degrassinoel,if it works for you thats great.But I know with me,everything has been tried and nothing is working,even pain killers don't work anymore to relieve the pain.This is an absolute last resort.My consultant has tried everything he can to control it,but all have failed.If I wasn't in so much pain,and it wasn't effecting every area of my life,I would be saying no to surgery too,but I have no other choice.Think you should consider going back to your consultant to if any of the newer drugs would suit you.My stomach is constantly gurgling,morning,noon and night.Girls in work call it my alienLOL

The_Conductor

Your alien?
My consultant says a noisy stomach is a good sign- that its when it gets incredibly quiet that he begins to get really worried. I don't tend to have an amazingly loud stomach- my speciality seems to be a series of little burps all the time

I hope your surgery goes well- the very best of good wishes to you.

Shane

The_Conductor

http://www.irishtimes.com/newspaper/breaking/2009/1028/breaking18.htm

Irish pharmaceutical company Elan and its US partner Biogen said a new analysis of three late-stage clinical trials showed that their Tysabri medicine reduced the rate of hospitalisations in people with moderate-to-severe Crohn's disease.

In patients treated with Tysabri, the rate of hospitalisation for any reason was reduced by 35 per cent during the initial period of treatment and by 44 per cent during the maintenance period, Dublin-based Elan and Cambridge, Massachusetts-based Biogen said today in an e-mailed statement.

Tysabri was cleared in the US in January 2008 to treat Crohn's disease, an inflammatory intestine and bowel disorder that affects as many as 500,000 Americans.

The drug is thought to inhibit white blood cells from attacking healthy tissue, although the exact way it works isn't fully understood, the companies said on a Web site for the drug.

US regulators temporarily suspended sales of Tysabri, which has also been approved to treat multiple sclerosis, in 2005 after three cases of the deadly brain disease progressive multifocal leukoencephalopathy, or PML, were reported.

The drug was reintroduced after MS patients pleaded for the product's return. However, European regulators said last week they are reviewing Tysabri's safety after it was linked to 23 cases of the disease, almost twice the number of infections previously disclosed.

Less than one patient in 1,000 develops PML, with those who get more monthly infusions having increased risks, according to the US Food and Drug Administration.

Bloomberg

lip

Never heard of that drug.Would it be similar to Infliximab I wonder.
Just an update,went to my app with surgeon yesterday.My husband took day off to come with me.Waited for 2.5 hours before being called by a doctor,to be told that I needed to see the surgeon himself,who was not in.OMG,I was sooooo annoyed:mad:,really thought I would get some answers.No apology,nothing,just come back in 2 weeks.Its so frustrating.
Sorry for the rant.

lip

Hi.Just wondering if anyone has gotten the swine flu jab.I'm supposed to be getting mine tomorrow,but I read that even with the vaccine people with auto immune disease can still get it,has me wondering whats the point then and if all my family should be getting the jab at the same time as me.In 2 minds now whether to get it or not,think I'll have to speak to gp again before he gives it to me.

The_Conductor

lip wrote: »

Hi.Just wondering if anyone has gotten the swine flu jab.I'm supposed to be getting mine tomorrow,but I read that even with the vaccine people with auto immune disease can still get it,has me wondering whats the point then and if all my family should be getting the jab at the same time as me.In 2 minds now whether to get it or not,think I'll have to speak to gp again before he gives it to me.

I got it almost 2 weeks ago. It does take 10-12 days for your immune system to build up a degree of relative immunity from the vaccine- so I'd continue to exercise due caution- but seriously- if you're on immunosuppressants- you are far more susceptible to catching it in the first place than a random stranger walking down the street- and if you do- you are more likely to develop complications. Surely the easy course of action is to vaccinate yourself- its an insurance policy against the worst happening.......

lip

Hi,yeah,I agree.Myself and DH had a chat about it after and I decided I was being stupid really.The benefits surely outweight the negatives.Going to gps after dropping kids to school.

Bonnie09

I had the swine flu vac on Monday and all is fine bar the fact my arm hurt like hell. GP also gave me the flu vac last week so Im all sorted now Would def recommend it as its too much of a risj without it.

lorebringer

I got mine on Thursday, felt terrible on Friday but not too bad today. The OH got it too, on account of me! I was told to be careful for about 10 days afterwards, until my immunity builds up.

lip

Hi,got my vaccine on friday morning.My arm has a huge lump on it and is very sore to move or touch,and its itchy too,but can't scratch cos its too sore.Just wondering if any of you had this and how long it lasts.GP said i could get a bit of swelling or a small lump on the injection site and it should go in 1-2 days.My lump is quite big and doesn't seem to be decreasing in size yet.I'm going to ring him in the morning if its still the same,but was curious if anyone else had this.thanks.

The_Conductor

lip wrote: »

Hi,got my vaccine on friday morning.My arm has a huge lump on it and is very sore to move or touch,and its itchy too,but can't scratch cos its too sore.Just wondering if any of you had this and how long it lasts.GP said i could get a bit of swelling or a small lump on the injection site and it should go in 1-2 days.My lump is quite big and doesn't seem to be decreasing in size yet.I'm going to ring him in the morning if its still the same,but was curious if anyone else had this.thanks.

My upper arm/shoulder was very sore for about 2-3 days- but it died down then. I had a worse reaction from the regular flu vaccine a few weeks previously- with sore joints for almost a week. Then again- I haven't caught the flu- so imho, I'm more than happy to have gotten it. It really is a case of weighing up the pros and the cons- I'm on immunosuppressants, and I know some people in work have had the Swine Flu. If I caught it, I'd be screwed. Its as simple as that- for me.

lip

Thanks for that.I was fine after flu jab,just sore muscle.I feel fine other than the sore lump on my arm.Had a headache after but panadol soon got rid of that.Like you,I'm on immunosuppressants too,so I'm glad I got it.