Crohn's Disease

The_Conductor

livedadream wrote: »

Needless to say while I'm sick I would still murder a pizza!!!

I think most of us can relate to that.........
The fact that you can't have it- makes it all the more alluring- despite the fact that you know deep down that as soon as you take a mouthful- you'll regret it.......

I think most of us do it- from time to time- its just part of being human........

What I do when I'm flaring- is try to get as much rest as possible- so instead of going for a coffee break with my colleagues- go to the sick room and lie down for 20 minutes (or hide in the toilet and nap on the toilet- hell, I've laid down on the floor in one of the conference rooms, when someone else was in the sick room.........)

Rest makes a difference- it really does. Whenever you're feeling under the weather- any fatigue whatsoever (and if you have Crohn's- you know what fatigue means, like no-one else can quite comprehend)- just gets magnified beyond anything it should be..........

Little naps- a few minutes here and there- throughout the day- can be that little bit you need just to keep going. Its not a solution- its a coping mechanism- ultimately- if your flare doesn't die down- you will have to bite the bullet and take the heavy approach.

I know I keep a few bottles of different types of steroids handy for when I need them- and indeed- I have vials of stemetil and other anti-spasmodics- in the fridge and the cupboard for when I need them.

If you need medication- your body is not going to thank you for neglecting it. You have been prescribed (whatever you've been prescribed)- not taking it- when your physician imagines you are- doesn't do you or they any favours......

Is the new job you're going for worth hiding your Crohn's like this?
Could you live long term like you're currently living?

I've worked in HR in the past- and I understand your reticence to having your condition recognised. Seriously though- life is short- we need to get over the bar on this.

I'm going to hazard a guess that you're not in Ireland?

livedadream

No I'm in Ireland... The new stuff was to add to the stemotoil, buscopan, prezolione, lomotil etc etc etc I am normally never flaring for this long. I did my first half marathon two weeks ago during the middle of this flare and it was amazing but defo took its toil.
I might ring him tomorrow and ask him is there anything else I could take other than the new drug... One that like the others won't show up. It's only because it's a try-psych drug sorry I can't spell it at all...that it would show up. The rest don't. I know I need to just suck it up but with the scope coming up I'm hoping I can hold out till then.

The new job is THE JOB. The one I've worked for for the last 5 years. Your right I can't go on as I am but this is the longest flare I've had normally once I go back on the liquid diet it clearly up in a week or two. Just hoping it sorts itself out soon I guess

added update:
lost the will to live last night around 3am when i was puking pure bile so made an appointment to talk to my GP about the new meds and if there is anyway around them and/or the drug test stuff.
sick of being tired and feeling like mush. also going from looking normal to 9 months pregnant over the course of one night.

Tony H

haven't posted here in a while , but its been a bad few weeks , recent history is that I was on humira for a little over a year (up to end of August) when it stopped working , put on remicade small improvement , then major flare ,
admitted through a&e last sat morning
on iv fluids antibiotics ,hydrocortisone , nothings working and I'm really feeling like crap , last scope showed major inflammation of lower colon ,
Anyway its time for surgery and I'm freaked out , i'm just waiting for the surgical consultant to visit to talk me through options , just needed to vent a bit and get used to the fact of having a stoma ,
thanks for listening .

Riven_Sky

I'm really sorry to hear you're having such a tough time recently, Tony. I remember back last year when you were starting on the humira.

It sounds like you're where you need to be at the moment. Hopefully once you've seen the surgeon you'll have a better idea what the plan is regarding the type of surgery, recovery and the stoma situation. I get why you're freaked out about the whole thing, I'm sure I would be too.

I haven't had surgery for my Crohn's but I know others who frequent this thread have and I'm sure they will be able to lend their experience and advice, if and when you need it. I just wanted to let you know that I'd seen your post and have my fingers crossed for a good outcome for you. Do come here to vent as often as you need, it helps to talk to people who have some idea what you're going through.

Totofan99

Tony H wrote: »

haven't posted here in a while , but its been a bad few weeks , recent history is that I was on humira for a little over a year (up to end of August) when it stopped working , put on remicade small improvement , then major flare ,
admitted through a&e last sat morning
on iv fluids antibiotics ,hydrocortisone , nothings working and I'm really feeling like crap , last scope showed major inflammation of lower colon ,
Anyway its time for surgery and I'm freaked out , i'm just waiting for the surgical consultant to visit to talk me through options , just needed to vent a bit and get used to the fact of having a stoma ,
thanks for listening .

That sucks man. If it's any consolation to you, I have an ileostomy since August 2015 and it has drastically changed my life for the better. Wishing you all the best with everything. And feel free to PM me if you want to.

The_Conductor

Sorry to hear what you're going through Tony.

I've deliberately been trying to keep away from here myself- as things haven't been the best for me either.
I've had my meeting with the surgeon- which didn't go entirely as I had thought it would- the upshot of which is multiple resections, a stoma and the probability of an elongated healing process- partly because of the Humira.......
On the brightside- my GP has referred me to a rheumatologist in St. Vincents- so hopefully an appointment beckons on that front- however, its tempered with the fact that they're not writing me up for any more pain relief because of the potential for further kidney damage.......

Vis-a-vis surgery- don't get freaked out by it- I've had more intestinal surgery than anyone I have come across- and I can honestly say- the relief after the surgery is nothing short of miraculous. The simple pleasure of being able to eat a meal- without wondering when you're going to start getting bloated, the pain, the intestinal gas movements, more pain- simply experiencing life without all this- is spectacular and wonderful.

Please don't worry about the surgery- the only concern really, is the same as my current concern- that is on Humira or Remicade- the healing process can take an extended period of time (I've been told up to 3 months). That said- its entirely possible you may be out of hospital in a week to 10 days (typically they take out the staples somewhere between day 10 and 12) and then its a case of taking things as easy as possible to allow your body a chance to heal.

When I find myself in dark days- awaiting surgery- meds not working- an uncertain prognosis- I cheer myself up by thinking of just how wonderful its going to be at the end of it all- when I've healed after the surgery- and am not in pain. Focus on the little things that you don't have or enjoy at the moment (simple things like being able to sleep without being constantly awoken with stabs of pain)- and this is what the surgery is going to give you. It will be some short term pain and inconvenience, for, hopefully, the longer term gain from the alleviation of symptoms, being able to eat foods you've had to avoid (within reason), even somethings like being able to put on your seat belt in a car without it feeling like someone has stabbed you.

Life can be crap- this is an understatement- but it can get better- look forward to better days ahead.

Most of us here know what you're going through- and are there if you'd like someone to talk to.

Best wishes to you.

Tony H

The_Conductor wrote: »

Sorry to hear what you're going through Tony.

I've deliberately been trying to keep away from here myself- as things haven't been the best for me either.
I've had my meeting with the surgeon- which didn't go entirely as I had thought it would- the upshot of which is multiple resections, a stoma and the probability of an elongated healing process- partly because of the Humira.......
On the brightside- my GP has referred me to a rheumatologist in St. Vincents- so hopefully an appointment beckons on that front- however, its tempered with the fact that they're not writing me up for any more pain relief because of the potential for further kidney damage.......

Vis-a-vis surgery- don't get freaked out by it- I've had more intestinal surgery than anyone I have come across- and I can honestly say- the relief after the surgery is nothing short of miraculous. The simple pleasure of being able to eat a meal- without wondering when you're going to start getting bloated, the pain, the intestinal gas movements, more pain- simply experiencing life without all this- is spectacular and wonderful.

Please don't worry about the surgery- the only concern really, is the same as my current concern- that is on Humira or Remicade- the healing process can take an extended period of time (I've been told up to 3 months). That said- its entirely possible you may be out of hospital in a week to 10 days (typically they take out the staples somewhere between day 10 and 12) and then its a case of taking things as easy as possible to allow your body a chance to heal.

When I find myself in dark days- awaiting surgery- meds not working- an uncertain prognosis- I cheer myself up by thinking of just how wonderful its going to be at the end of it all- when I've healed after the surgery- and am not in pain. Focus on the little things that you don't have or enjoy at the moment (simple things like being able to sleep without being constantly awoken with stabs of pain)- and this is what the surgery is going to give you. It will be some short term pain and inconvenience, for, hopefully, the longer term gain from the alleviation of symptoms, being able to eat foods you've had to avoid (within reason), even somethings like being able to put on your seat belt in a car without it feeling like someone has stabbed you.

Life can be crap- this is an understatement- but it can get better- look forward to better days ahead.

Most of us here know what you're going through- and are there if you'd like someone to talk to.

Best wishes to you.

Thanks for the reply and all the great info , I have come to terms with it mostly and deep down I knew it was coming
I have had uc/ crohnes for over 30 years and apart from the great year on humira it's taken its tolll
I have the best GI , Dr Jane Mc Carthy and she had thrown everything available at it ,
And when she advised surgery I knew my time wa up ,
The best thing everyone is saying it that I get my quality of life back and that will be great ,
I find great inspiration from this forum and when I see what other people are going through I see how easy I have it ,
Really sorry to see how bad you are having it at the moment and hope everything goes well for you
People complain about the health system ( I'm a public patient ) , but I have been in the Mercy Hospital here in Cork for the last week and I can saw from top to bottom the staff here are outstanding , and have kept me healthy and reasonable sane .
Thanks again for all the great words of encouragement from everyone here
Tony

Qreq

A long term ostomate here. Just wondering where people can get accessories like clothes designed to disguise etc in Ireland? Can't seem to find a whole lot. And if you could what would you want it to sell??

You can get some high-waisted underwear to cover the stoma bag; there's also some underwear which includes a pocket you can rest the bag in. Another thing is a support belt which is a wide belt of fabric that goes around your body and has a pocket for the stoma bag. There's another product which puts a hard plastic casing around your bag so that it can't be accidentally squashed, for example if you lean your belly on something or play contact sports. You might find something useful from these companies websites: Comfizz, OstomySecrets, SuportX, Vanilla Blush, White Rose Collection.

Tony H

Qreq wrote: »

You can get some high-waisted underwear to cover the stoma bag; there's also some underwear which includes a pocket you can rest the bag in. Another thing is a support belt which is a wide belt of fabric that goes around your body and has a pocket for the stoma bag. There's another product which puts a hard plastic casing around your bag so that it can't be accidentally squashed, for example if you lean your belly on something or play contact sports. You might find something useful from these companies websites: Comfizz, OstomySecrets, SuportX, Vanilla Blush, White Rose Collection.

thanks for all that info , I love researching beforehand ,

Tony

Tony H

Has anyone any recommendation for protein drinks that taste ok? , the hospitals are giving me fresubin and I cant handle the taste .

The_Conductor

Tony H wrote: »

Has anyone any recommendation for protein drinks that taste ok? , the hospitals are giving me fresubin and I cant handle the taste .

Ensure milkshake flavoured protein drinks?
Some of them are ok (the strawberry one for example) avoid the vanilla- and the banana one actually tastes metallic.......

Tony H

The_Conductor wrote: »

Ensure milkshake flavoured protein drinks?
Some of them are ok (the strawberry one for example) avoid the vanilla- and the banana one actually tastes metallic.......

thanks for the recommendation , will give that a try .

Riven_Sky

Tony H wrote: »

Has anyone any recommendation for protein drinks that taste ok? , the hospitals are giving me fresubin and I cant handle the taste .

Fortisip is another option. I can't personally attest to their taste but in one place I worked they were the popular option for children, I assume due to them being the more palatable choice (as I believe they're all fairly similar from a nutrition point of view).

OUTDOORLASS

Hi Tony,
My Mother in law takes a yogurt version....and they are actually quite nice. I find they are nicer if chilled in the fridge.
I know some of that stuff might.nt take the best....but remember....they are a full meal with full nutrients....in that little carton....and they are low residue...which means smaller output....and less pain..!! x

Tony H

I have an update on my surgery , can't get a colorectal surgeon in Cork for a few months ,
So I'm getting it done in st James next week by Dr Paul McCormack ,

Qreq

For people who have had an ileostomy, colostomy, or urostomy (what are they?), you might find the Ileostomy Association of some use. It has branches in Ireland (South and North) and Britain, a quarterly journal, some useful handouts, an online forum, and they'll point you to your nearest ostomy support group or help you set one up in your area if possible. The support groups are ran by the people who attend them (people who've had any ostomy and whomever they bring for moral support), not IA staff, so it can be as informal or formal as people like. For example, it could be chatting about your experiences over a cup of tea or inviting a stoma care nurse to talk to the group, or both.

IA has national meetings twice a year. The next one is tomorrow, Saturday, October 22nd, 12.00-4.30pm at Ashling Hotel, Parkgate Street, Dublin. It's free to attend and open to the public. There will be product exhibitions (possibly free samples) and talks. Outside those national meetings, your local support group decides the frequency of their own meetings.

IA contact for the Republic of Ireland
IA contact for Northern Ireland

Full disclosure: I'm not paid, employed, or contracted by IA; I volunteer at a support group because it's useful to a family member. I don't think enough ostomates know that this help is there for them.

Tony H

Surgery tomorrow at lunchtime here's to life without having to map out where toilets are available ðŸ˜
Thanks for all the support .
Tony

CathyMoran

Best wishes to you.

OUTDOORLASS

We.l be thinking of you Tony. U wont know yourself by Christmas....take care. xoxo.

Qreq

All the best.

The_Conductor

Tony H wrote: »

Surgery tomorrow at lunchtime here's to life without having to map out where toilets are available ðŸ˜
Thanks for all the support .
Tony

Good luck tomorrow Tony- we're all rooting for you!

livedadream

Best of luck tony!!

Riven_Sky

Good luck Tony, all the best for tomorrow!

Tony H

Surgery over and done with back in ward

Tony H

Everything was going well up to Thursday ,then the stoma stopped working ,lots of pain vomiting
Had to back to surgery last night and things are moving again but very slowly
They are still having to asperate my stomach through an ng tube but not as much today as yesterday
Had this happened to anyone else

Sorry for rambling but just got pain meds

Qreq

Sorry to hear things didn't go smoothly. Don't worry about rambling - any and all means of passing the time are necessary in hospitals even if you're just a visitor in the waiting room. Ramble away! I hope things start to go better for you.

OUTDOORLASS

Hi Tony, so sorry to hear of set back. Never had to back to surgery, but after any big operation, my system would be very slow to get going. U have to remember, that whilse you can see a neat cut in your tummy, they have done major cutting/rooting in your guts. Tht asperation tube is God damn awful. But it is removing the bile that your system cant process at the moment. Be patient with your body. Take EVERY pain killer you are allocated. Dont let the pain build up. It it gets a hand on you, it takes ages to get back on top of it. If you are painfree, you will relax your body. I know it is.nt easy, but get back on your feet for small walks asap. It will help everything get working.
Keep us updated, cus we genuinely hope you impove soon. Best regards, ODL

livedadream

Hope your okay tony, thankfully I've avoided any serious hospital visits so far this year.
I was happy out in my smug 'the liquid diet has cured me phase' when I had the opposite of what I normally suffer from. 1 week and an impaction, took meds it cleared (needless to say I'm never having a child if pooping is that painful) was flying it this week all smug and happy out missing food but happy to avoid if I was pain free... then another 'blockage' having a genuine moment of pity just can't imagine this for the rest of my life...

ChartAccount

http://www.medicaldaily.com/crohns-disease-causes-2016-food-poisoning-bacteria-linked-inflammatory-bowel-400833

Any one else start Crohns with bouts of Gasterenteritis?

Could it be that Crohns is a bacterial infection and immune system responding or do people think its just an auto immune disease...

http://ibdnewstoday.com/2016/06/27/2016062220160622redhill-biopharma-announces-publication-demonstrating-potential-efficacy-of-rhb-104-for-crohns-disease-associated-with-map-infection/

Tony H

Just another update
Tests came back positive for c -diff
Hopefully that will help with treatment , just feeling sorry for myself at the moment and just want to see some light at the end of the tunnel
One of the funny things that cracked me up was my surgical team over the weekend was called "Team Igor" which terry pratchett fans will get .