Crohn's Disease

smiley face · 23-10-2014 8:34am

Hi I'm new to this forum.
I just wish to ask people's advice about Ibd.I was referred in the summer with my bowel problems.Frequent diarrhoea,mucus, blood and weight loss.In sept I had an Ocg down and a sigmoidoscopy.This found lots of ulcers on my colon and suspected colitis.They wanted to do a fuller colonscopy to get a better picture and rules out chrons.They put me on the emergency list.I've gone for the full colonoscopy and the consultant has said biopsy results will take 6 wks.Is this the normal time for results?

shalalala · 23-10-2014 9:09am

smiley face wrote: »

Hi I'm new to this forum.
I just wish to ask people's advice about Ibd.I was referred in the summer with my bowel problems.Frequent diarrhoea,mucus, blood and weight loss.In sept I had an Ocg down and a sigmoidoscopy.This found lots of ulcers on my colon and suspected colitis.They wanted to do a fuller colonscopy to get a better picture and rules out chrons.They put me on the emergency list.I've gone for the full colonoscopy and the consultant has said biopsy results will take 6 wks.Is this the normal time for results?

They told me two weeks so when mine took 6 I was lulled into a false sense of security so try not to worry too much but it will probably take the full 6 weeks

The_Conductor · 23-10-2014 10:07am

There isn't really a 'normal time' for results.
It can depend on a long list of factors- not leastly the time of the year, and how busy they are- having had several done, I've found results are quickest in the summer (10 days to 2 weeks)- but slowest in the winter months (which corresponds with pretty much all hospital procedures).

Assume its going to be the 6 weeks- if its quicker, great- but it may not be.

smiley face · 23-10-2014 11:26am

Thanks for both your replies.I just felt it was a long time as my last biopsy results from the sigmoidoscopy took less than 3 wks. I guess every test is different.The waiting is the hardest!

shalalala · 09-11-2014 1:04am

I have been in constant contact with a very young lady with crohns since I was diagnosed. We have never met but share the same treatments (although I was never operated on) and similar side effects.

I got news today that she is in icu. It is not directly crohns related but I am so scared. I am scared for her and me and us. Her mother contacted me and asked me not to post anything on fb or anything which I wouldn't do. But I just need to get this out there.

Please. Everyone pray. Also. Everyone, get your bloods checked, if you are in any pain get it checked out. Be that annoying patient that hassles the doctors. We know our bodies better then anyone else. Trust it when it says that something isn't right.

patnor1011 · 10-11-2014 11:07am

Any news about question if Crohn's will be considered as "medical condition" by Irish Water?

The_Conductor · 10-11-2014 11:32am

patnor1011 wrote: »

Any news about question if Crohn's will be considered as "medical condition" by Irish Water?

The proposal is to replicate the list in use in the UK- which does include Crohn's Disease as a medical condition.

thingamagig · 18-11-2014 10:16pm

Hi, I'm fairly new to here too. I was wondering how do people here come with the emotional impact of the disease? I'm asking as I've had the worst year/year and a half of the disease, not in terms of the seriousness of the inflammation, but the impact it has had on my life. Long story short, but I got a peri-anal fistula ( a tinsy one, but sore) and there was subsequent damage to the muscle. And of course, what heals easily when you're healthy, doesn't patch itself over quite so quickly when you're a crohnser. Spent the whole year, every bloody day, having accidents and reach the wc usually even though I was in the same room. ( Needless to say I was also in pain and some days had muscle/joint pain so debilitating that I had to drag myself upstairs. Other days I ran up them! Go figure)

Was in a class setting (tg I was only the student) but I could not cope with the daily humiliation. Most days I ended up in tears, or on the verge of them breaking through. So guys, how do you cope? Do you talk to someone you trust, or can you bring the subject up with anyone? God knows I felt, and feel, isolated. ( p.s. excuse the rambling writing. never know how to put this into words) And do you get that, you look healthy so therefore you are bs?

thingamagig · 18-11-2014 10:17pm

Hi, I'm fairly new to here too. I was wondering how do people here come with the emotional impact of the disease? I'm asking as I've had the worst year/year and a half of the disease, not in terms of the seriousness of the inflammation, but the impact it has had on my life. Long story short, but I got a peri-anal fistula ( a tinsy one, but sore) and there was subsequent damage to the muscle. And of course, what heals easily when you're healthy, doesn't patch itself over quite so quickly when you're a crohnser. Spent the whole year, every bloody day, having accidents and reach the wc usually even though I was in the same room. ( Needless to say I was also in pain and some days had muscle/joint pain so debilitating that I had to drag myself upstairs. Other days I ran up them! Go figure)

Was in a class setting (tg I was only the student) but I could not cope with the daily humiliation. Most days I ended up in tears, or on the verge of them breaking through. So guys, how do you cope? Do you talk to someone you trust, or can you bring the subject up with anyone? God knows I felt, and feel, isolated. ( p.s. excuse the rambling writing. never know how to put this into words) And do you get that you look healthy so therefore you are bs?

The_Conductor · 19-11-2014 7:52am

thingamagig - I'm sorry you've had such a hard time.
It is difficult- most of us do have accidents from time to time (though rarely on such a protracted ongoing basis).

Speaking from personal experience- I manage to work- and I do occasionally have accidents (every few days). I keep several changes of underwear in my drawer along with a change of clothes, and shower things- so if/when I have an accident- I can have a shower and clean myself up. I also keep industrial strength air freshner (Its actually called Blast- and is used to clear up the smell of must in boats)- alongside a bewildering array of deoderants and aftershave ever present, in case I need them........

There are lots of groups out there where most of us are able to discuss these things- the Irish society for colitis and crohns, has a very active facebook page- and they organise regular meetings- and some members do little meetups from time to time (coffee morning type events- where people can relax and swap notes with people who understand what everyone is going through).

Its not easy- and looking healthy, even when you're in excruciating pain- can be one of most unfair things of all. I've been given out to for using a disabled toilet- when I urgently needed one and there was none free- I've had all manner of abuse flung at me, by people who have no idea of what I'm going through- and think its fair game to hurl abuse, as I don't look ill.

There are days- when we all just hide somewhere and cry at how unfair things are- at how unfair people are towards us.

Don't give up- if you are finding things very difficult going- I'd also suggest insisting that your GI consultant comes up with a different regimen for you. Whatever you're doing at the moment doesn't seem to be working for you- life is too short- there are different ways of dealing with these issues.

thingamagig · 19-11-2014 11:32am

The_Conductor wrote: »

thingamagig - I'm sorry you've had such a hard time.
It is difficult- most of us do have accidents from time to time (though rarely on such a protracted ongoing basis).

Speaking from personal experience- I manage to work- and I do occasionally have accidents (every few days). I keep several changes of underwear in my drawer along with a change of clothes, and shower things- so if/when I have an accident- I can have a shower and clean myself up. I also keep industrial strength air freshner (Its actually called Blast- and is used to clear up the smell of must in boats)- alongside a bewildering array of deoderants and aftershave ever present, in case I need them........

There are lots of groups out there where most of us are able to discuss these things- the Irish society for colitis and crohns, has a very active facebook page- and they organise regular meetings- and some members do little meetups from time to time (coffee morning type events- where people can relax and swap notes with people who understand what everyone is going through).

Its not easy- and looking healthy, even when you're in excruciating pain- can be one of most unfair things of all. I've been given out to for using a disabled toilet- when I urgently needed one and there was none free- I've had all manner of abuse flung at me, by people who have no idea of what I'm going through- and think its fair game to hurl abuse, as I don't look ill.

There are days- when we all just hide somewhere and cry at how unfair things are- at how unfair people are towards us.

Don't give up- if you are finding things very difficult going- I'd also suggest insisting that your GI consultant comes up with a different regimen for you. Whatever you're doing at the moment doesn't seem to be working for you- life is too short- there are different ways of dealing with these issues.

Thank you so much. I didn't realise they met up tbh. Could with a chat with someone who understands the disease (and talk about other things too- not adverse to having a laugh). I do know they are suggesting a temp colostomy to give the muscle time to heal. At this stage I am finally ready to accept it. I think my discomfort was heightened because I was stuck in a room with 20 or so people where the average age was 19! And every time I got up I was disrupting the delivery of a lesson... (kind of).

I really admire your strength and I too have copped on to the benefit of having an emergency pack on me at all times. There were several times in the classroom when people picked up on the smell and there was a complaint about it. That hit hard and I spent several days in a bit of a tearful-zombie state. But no, there's no chance of me giving up either! Thank you for your kindness .

thingamagig · 19-11-2014 11:39am

OUTDOORLASS wrote: »

Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
some of the calories I have eaten....Happy W.end to all....

I thought I was the only one who finds it exhausting. I had a theory that because I'm afraid of needles (a bit) that the days I took Humira I was emotionally exhausted!! Nice to know there might be another explanation. I take Cellcept too so I tire faster than an OAP (once nearly conked out at a jumble sale- the high life)

P.s. I'm sure you deserve the extra calories!

thingamagig · 19-11-2014 11:48am

Thanks again. Sorry to write again but I can't edit the posts: Meant to say I am not averse to...

OUTDOORLASS · 19-11-2014 2:44pm

Odor....thats a topic that is not hit on often..I have found that to be a huge problem. On my part, when the
Crohns is active I think your intestinal bacteria goes into over load, and smell from your output can be unreal. I sometimes think it could be used in Chemical Warfare...smell the enemy out of their hidey places....LOL....
I had never heard of Blast...
Nowadays there is more anti smelly stuff available. I used to get this reoccuring dream/nightmare where I had to go to the loo, and could.nt find anyplace to go where there was.nt somebody else sharing the loo. I used to go up stairs and up corridors and anytime I found a loo, it seemed to be a comunal toilet.
Sometimes you would glory in having to be sick enough to go on an antibiotic, because it killed the bad bacteria as well, thus no smell from your output...
I dont know how to put smiley faces into a post....but I am smiling as I type. Thank God for a black sense of humour...

The_Conductor · 19-11-2014 3:24pm

This is the 'blast' I was talking of......

The shipping on it is ridiculous- but it actually works (and the cranberry one smells nice- there are ones- such as vanilla or lemon and lime- that are overpowering and quite vile in their right.......)

Yes- the stench is quite ridiculous- as indeed, is the amount of gas we can produce- sometimes to amuse myself I used imagine hooking a hose up my ass and somehow using the gas in a central heating system......... but, by god, the smell.........

I really don't understand how its possible for us to smell so bad.......... but we do..........

thingamagig · 22-11-2014 9:58pm

I hope no one minds me writing here for what seems like the hundredth time this week. But I am really confused and need to get a few things off my mind.

So, as I have written before, I have had near daily accidents due to a complex fistula that has damaged my muscle. During that time I have sometimes had periods where I felt ok and had no accidents, usually for a max of two weeks ( I think this might be because the level of inflammation has an effect on the muscle healing). After this the accidents would return. When this first happed, I thought that I was lamgetting better and I was delighted. But it didn't last.

In the summer I had an MRI scan of my fistula, and after this they began to treat my disease as they would crohn's (I had been diagnosed with Ulcerative Colitis before this). As a result of this, I was put on humira ( used with the Cellcept I had already been on). After about two months, I developed another fistula (nowhere near the muscle, tg). Basically they then suggested a temp colostomy as I was not responding to the Humira. However, in the last two weeks, praise Jesus!- I have been accident free. My second fistula has also healed and is now just a mere bump. But the first fistula seems to still be oozing. I have no idea what the hell they are going to suggest now or whether I am actually going to stay well. My appointment is soon and my head is all over the place.

Northern Monkey · 23-11-2014 12:15am

I'm not much help on the fistula, but I'd say it was a good 8 weeks from the start of taking humira that my symptoms started to die down.

thingamagig · 23-11-2014 12:22am

Northern Monkey wrote: »

I'm not much help on the fistula, but I'd say it was a good 8 weeks from the start of taking humira that my symptoms started to die down.

Thanks. Does take a while. Unfortunately it has been months. Thanks for input though andI feel better after just writing this and talking to someone who knows something about the disease. I am so not an expert on fistulas either. Whole thing still confuses me. Didn't know what a little harmless-looking abscess could turn into.

25-11-2014 7:13pm

The_Conductor wrote: »

The proposal is to replicate the list in use in the UK- which does include Crohn's Disease as a medical condition.

Proposed changes to Medical Cards announced today seems to permit Doctors recommending Cards for patients....any chance for Crohns sufferers now?

The_Conductor · 25-11-2014 7:15pm

1966 wrote: »

Proposed changes to Medical Cards announced today seems to permit Doctors recommending Cards for patients....any chance for Crohns sufferers now?

Are the rules based on means- or medical conditions?

shalalala · 25-11-2014 7:24pm

The_Conductor wrote: »

Are the rules based on means- or medical conditions?

Both as far as I can tell. Tbh it looks like it could change something. Varadkar seems to have a clue about what needs to be done.

It looks like there will be medical cards for some and access to treatments or medication for free for others. So it isn't a one size fits all. Also only one application process! Yay

The_Conductor · 25-11-2014 7:26pm

How does one apply?
Sorry for being a bit clueless.......

shalalala · 25-11-2014 7:31pm

Never seen you ask a question! :pac:

I jest. This is all I have managed to read on it http://m.rte.ie/news/2014/1125/662286-medical-cards/ even slight changes will help most people, cannot get much worse. I am one of the lucky few that got a card until 2017 with no review. This was after they lost parts of my application, lied and just generally acted stupid. I actually got a letter of apology from varadkar after I complained through yoursay twice (because they lost my first complaint).

The_Conductor · 25-11-2014 7:56pm

Dammit, dammit, dammit.......

The Expert Panel recommended that a person's means should remain the main qualifier for a medical card.

It also said it would not be feasible, desirable, or ethically justifiable to list medical conditions in priority order as a means of determining medical card eligibility.

shalalala · 25-11-2014 8:04pm

But...

"There will be changes in relation to the discretionary medical card process, allowing the HSE to also take account of medical hardship and burden of illness in assessing certain cases.

The HSE is to also ensure a more integrated and sensitive application process, involving a greater exchange of information between the central assessment office and local health staff familiar with the patient's circumstances.

Family GPs, public health nurses and social workers will be consulted to ensure that all decisions are fully informed.

The HSE and the Department of Health are to examine the best way to meet the needs of people with significant medical conditions who do not hold a medical card.
...
the new system will see all those in need of a medical card treated equally and will be more patient-centred rather than just looking at "a set of numbers".

He said that because doctors and social workers are to be included in assessments for patient eligibility, the system should be fairer,
...
Last month, Mr Varadkar said the Department of Health wanted to change the current system of discretionary medical cards, to introduce the concept of medical hardship.

He proposed this for cases where there is a sick child and their illness has an impact on the family, and for an individual where their illness has a big impact on them."

I can see how this might help you. I know that you have had a worse time with crohns then many of us so if doctors etc. Are involved, you may not get a full medical card, but maybe access to your treatments for free?

The_Conductor · 25-11-2014 8:10pm

I haven't actually gone to a GP at all this year- since my GP retired.

I genuinely don't know where to go from here......... First step- a new GP, I guess.........

CarrickMcJoe · 25-11-2014 8:46pm

thingamagig wrote: »

I hope no one minds me writing here for what seems like the hundredth time this week. But I am really confused and need to get a few things off my mind.

So, as I have written before, I have had near daily accidents due to a complex fistula that has damaged my muscle. During that time I have sometimes had periods where I felt ok and had no accidents, usually for a max of two weeks ( I think this might be because the level of inflammation has an effect on the muscle healing). After this the accidents would return. When this first happed, I thought that I was lamgetting better and I was delighted. But it didn't last.

In the summer I had an MRI scan of my fistula, and after this they began to treat my disease as they would crohn's (I had been diagnosed with Ulcerative Colitis before this). As a result of this, I was put on humira ( used with the Cellcept I had already been on). After about two months, I developed another fistula (nowhere near the muscle, tg). Basically they then suggested a temp colostomy as I was not responding to the Humira. However, in the last two weeks, praise Jesus!- I have been accident free. My second fistula has also healed and is now just a mere bump. But the first fistula seems to still be oozing. I have no idea what the hell they are going to suggest now or whether I am actually going to stay well. My appointment is soon and my head is all over the place.

God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
Pity there was no list brought in for medical cards, think it will still be difficult to procure one.

thingamagig · 25-11-2014 9:18pm

CarrickMcJoe wrote: »

God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
Pity there was no list brought in for medical cards, think it will still be difficult to procure one.

Fistulas: small but my can they cause damage. I am glad you are happy with your colostomy. And yes, there's a heck of new meds. Cellcept is one that's only recently - I think-being used with ibd sufferers. Are fistulas common with colitis?Just wondering as after I got my second one my diagnosis changed form colitis to crohn's. Though I'm not sure that diagnosis is set in stone either. Confusing business this ibd!

Anyhow, I got GOOD news today. They are seeing how things go over Christmas. Things are very positive at the minute: I am accident free (as most adults like to be!) and my second fistula has healed. The Humira must be having some impact. As long as this keeps and I don't add another fistula to my collection, no colostomy for me!!

Thanks for your good wishes and hope you keep in good health! Ps, I'm afraid not all those with ibd lose that much weight. When I was first diagnosed I had serious inflammation of the bowel (and a heck of pain) but no incontinence. Didn't lose ANY weight. Bowel was impacted with faeces as far as I know. There's no 'typical' flare for me, it's up to the gods what happens !

good luck!

thingamagig · 25-11-2014 9:24pm

CarrickMcJoe wrote: »

God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
Pity there was no list brought in for medical cards, think it will still be difficult to procure one.

Fistulas: small but my can they cause damage. I am glad you are happy with your colostomy. And yes, there's a heck of new meds. Cellcept is one that's only recently - I think-being used with ibd sufferers. Are fistulas common with colitis?Just wondering as after I got my second one my diagnosis changed form colitis to crohn's. Though I'm not sure that diagnosis is set in stone either. Confusing business this ibd!

Anyhow, I got GOOD news today. They are seeing how things go over Christmas. Things are very positive at the minute: I am accident free (as most adults like to be!) and my second fistula has healed. The Humira must be having some impact. As long as this keeps and I don't add another fistula to my collection, no colostomy for me!!

Thanks for your good wishes and hope you keep in good health! I am on a lot of meds like you were but didn't lose much, if any, weight. When I was first diagnosed I had serious inflammation of the bowel (and a heck of pain) but no incontinence. Didn't lose ANY weight. Bowel was impacted with faeces as far as I know. There's no 'typical' flare for me, it's up to the gods what happens !

good luck!

CarrickMcJoe · 25-11-2014 9:59pm

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

thingamagig · 25-11-2014 11:23pm

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 · 26-11-2014 1:43pm

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 · 26-11-2014 1:50pm

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 · 26-11-2014 1:50pm

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 · 26-11-2014 1:51pm

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

The_Conductor · 26-11-2014 1:55pm

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 · 27-11-2014 8:53pm

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 · 03-12-2014 12:33pm

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 · 03-12-2014 1:05pm

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 · 03-12-2014 1:31pm

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 · 06-12-2014 4:32pm

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 · 06-12-2014 6:48pm

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 · 07-12-2014 10:43pm

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 · 14-12-2014 5:13pm

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 · 14-12-2014 8:16pm

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 · 15-12-2014 1:04am

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 · 15-12-2014 3:19am

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 · 22-12-2014 4:33pm

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 · 20-01-2015 3:44pm

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 · 20-01-2015 5:32pm

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........

Crohn's Disease

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