Crohn's Disease

Dan133269 · 26-07-2011 12:57pm

Does anyone have any information regarding the availability of mercaptopurine (commercial name - puri nethol)? I'm sure other people take it for crohn's disease. I've been taking it for years, and the pharmacy tells me it is temporarily unavailable from the manufacturer's and they don't know when they will get more. Thankfully I have enough for the meantime, just wondering if anyone has any info. Thanks.

The_Conductor · 26-07-2011 1:19pm

Dan133269 wrote: »

Does anyone have any information regarding the availability of mercaptopurine (commercial name - puri nethol)? I'm sure other people take it for crohn's disease. I've been taking it for years, and the pharmacy tells me it is temporarily unavailable from the manufacturer's and they don't know when they will get more. Thankfully I have enough for the meantime, just wondering if anyone has any info. Thanks.

Have a word with your pharmacist- there are generic versions of Purinethol available- 6MP for example.

Ladjacket · 29-07-2011 12:27pm

Sitting watching Dynamo Magician last night and to my surprise he talks about his battle with Crohn's Disease - yet another example of someone who has fought the illness head on.

Sometimes I doubt if I have the illness at all - been on Imuran tablets since April and doing well. I have piled on the weight since my initial surgery in late 2009, from a healthy 11st to 13st now, still healthy I know but I thought that there would be weight loss and sickness etc.

Other people who know relations who have been diagnosed with the illness ask me to talk with them to show that they can get better - what experience do readers have with this? I would do this but I know that if I was in that situation I would not want someone who is well telling me how it can get better.

I hope everyone is doing well whatever stage they are at.

Berty · 29-07-2011 1:51pm

I thought I would give an update regarding my Fiancee and other things that have transpired since.

She had her surgery around 8 weeks ago and returned to work this week. She had a Stoma Reversal following her surgery in August 10' where she was given a temporary Ileostomy. She is doing well and is starting to put up weight. Her lowest when she collapsed last August was 45kgs and now she is up around 59kgs. Size 8 in her case or so.(depending on the shop apparently - women *le sigh)

Now a cruel yet mad twist. After she was released from hospital her sister was admitted to hospital 1.5 weeks later and 5 days later had BOWEL SURGERY AS WELL to remove part of her bowel. Much less so she didn't get a Stoma.

They are both recovering slowly but surely and have rather flatulent bowels. Being trapped in the same room as them is pure agony.

:D:D:D

My Fiancees surgery in August 2010. She was told that her Right Bowel was basically "perforated" like swiss cheese. It had to go basically hence the temporary ileostomy.

She is not on medication anymore but rather has adhoc visits with her Gastro and Surgeon.

It is mad to hear that from speaking to people at work about it that they say "oh yeah XX has it / had it". So many people have had or have Chrons. Mad. :eek:

LucyBliss · 29-07-2011 2:55pm

Other people who know relations who have been diagnosed with the illness ask me to talk with them to show that they can get better - what experience do readers have with this? I would do this but I know that if I was in that situation I would not want someone who is well telling me how it can get better.

I think it depends on how newly diagnosed they are and what you tell them. I mean, I would never tell someone who wasn't diagnosed long that I had a permanent illeostomy, because it would have freaked me out to hear that when I was new to having Crohns. But really, sometimes we don't want people to tell us that it's going to get better and that there's a hypothetical brighter future out there, we just want someone who understands what it's like to have to rush to the toilet at the worst moments, someone who has been through the rotten situation when that food you love can't be eaten anymore because you're up all night feeling like death. Talking to someone who knows about the more embarrassing aspects of having Crohns can be worth more to mental well-being than all the pep talks in the world.
That's how I see it anyway.

Beer Baron, great to hear about your fianceé. Sorry that her sister is having her own bowl issue experiences, but I'm delighted that they're both recovering.

And you're right, the amount of people you hear now with Crohns is increasing. When I was diagnosed back in 1994, people hadn't a clue what I was talking about, but over the years I've noticed more and more people saying that a friend/relative has it too. I hope the disease rate isn't increasing but if it's that more people are actually talking about having the disease, then that can only be a good thing because it can be hard enough coping day to day without feeling like you have to hide what's going on.

The_Conductor · 29-07-2011 4:06pm

I agree with LucyBliss- Crohns can be a very daunting disease, on so many different levels. You wouldn't know there was anything at all wrong with me- to look at me- hell, I could even do with loosing some weight- which is totally not what you'd expect from someone whose had Crohn's for nearly 30 years. If I were to tell someone newly diagnosed that its taken surgery on 6 or 7 separate occasions to get me where I am today- they would freak. And also- where am I today? Contrary to what you'd believe if you saw me- I need regular transfusions of iron and O+, I've been hospitalised already this year with significant bleeding on my kidneys (a side effect of Crohn's is a greater propensity towards developing clots- for which I'm on Warfarin for life- and if the dose is even slightly off- every single resection can start to bleed, kidney stones can bleed, hell- my knees and ankles are black and blue from bleeding.......

And yet- I consider myself to be a success story. I can live a relatively normal life. I hold down a job. I can drive without the safety belt crippling me. There is very little from a dietary perspective that I can't eat.

Sometimes- its the little things that most normal people don't even think about that become milestones for someone with Crohn's- and happy events when we manage to do that little something again.

I was such a sick child when I was younger- I genuinely never thought I'd live to see 30- much less be a dad to 2 kids who I love and adore.

You do have to be careful if you're talking to someone who is newly diagnosed- the battles some of us have had to live through- have been psychologically, never mind physically, destroying.......

Shane

CD. · 30-07-2011 10:21pm

smccarrick wrote: »

You do have to be careful if you're talking to someone who is newly diagnosed- the battles some of us have had to live through- have been psychologically, never mind physically, destroying.......

I find this quite amusing, as I was just diagnosed :P.

Personally though I want to learn everything I can, if it's a case I might need surgery I am interested in what surgerys I might require, but only superficially. I won't worry about it until it's a reality and I am told these are what you need.
I hope that makes sense :P like it wouldnt freak me out if someone else with Crohns needed a colostomy bag because it might not happen to me etc

I was bleeding slightly for about a year, went to doctor, started bleeding heavily enough for about a month (started at the begining of this month actually)
and the doctor reffered me to a specialist to get a colonoscopy.
Had the thing, didn't mind it (don't remeber it really) but that klean prep stuff is awful. After colonoscopy felt fine, went home, then started feeling severely nauseus, rang consultant's secretary (only number we had) and was told to go to vincents. On the way there, I threw up (lots >.<) and was taken straight in/given pain meds (which I promptly threw up.)

Pain stopped itself after a while as did the nausea so I didn't need the pain medication or the anti-nausea injection (was told by nurse i'll be right back with it, was waiting almost an hour/hour 1/2 before the doctor was there to prescribe it, think they called him the house doctor but not sure, by that stage i was grand) but was put on a drip for two days or so.

luckily there was no perforation of the bowel or anything, seems it was just a flare up type thing (most likely from the biopsy)

I was in the hospital since tuesday night and got out yesterday (yay) and I had an MRI and it seems as though it was caught early enough so that's good I think.

Currently I'm on prednisolone (steroids, prob spelled that arseways, sorry. had injections of them in the hospital) for the next three weeks before having a meeting with the consultant.

The consultant seems pretty awesome, knows what he is at and the like, seems really nice too so very happy I got him

is there any books or resources that anyone can recommend? I'm gonna read through the thread over the next few days (I'm really tired, don't know if it is the steroids or something, felt kinda moody earlier too but dunno if that's just tiredness.)
On calcium suppliments as well, and my protein was low.

Any general advice while on steroids (i know everyone is different) but i've never been on high doses of steroids for long periods so in the dark completely. will i be tired anything i should watch out for?

I apologise for the long post and hope it makes sense. feeling insanely tired now >.<

SusieBoozie · 01-08-2011 10:59pm

Hi all,just reading some of your storys,we seem to be in the same boat some way or another! I have crohns 15 years,many opps,meds,steroids etc.. still batteling along as i recently had an ileostomy,well 1 year now! had alot of complications,septisis went to heart and lung ended up in a coma for a week,abcsess oh i could go on.

To all the people who have an Ileostomy,Does it get easier? Will i ever except it?i have it only a year and have had it refashioned 3 times already due to the stoma not settling and skin going mental.

To be honest i hate the thing.anyone feel the same as me or am i out on that boat alone?

Suzanne
xxx

Berty · 01-08-2011 11:13pm

Suzanne,

I can only try to speak for my Fiancee but I think, as a partner, I feel everything that she does emotionally at least.

Her Ileostomy was temporary and she had it 10.5 months. She didn't quite slip into a coma but came close to it. She picked up an infection and came close to having a drain put into her back to drain fluid from her pelvic region. She struggled with the stoma like most. It "burst" numerous times in bed and a few times at work. She had to keep a bag under the desk with a change of clothes just in case. She had issues with it sticking to her skin, especially after a shower when her skin would be different. Her Stoma nurse selected the right size back in August 2010 and she never needed one re-modelled. On two occassions in the 10 months I had to ring the stoma nurse to get her to call my Fiancee who was at home with "issues" with the bag and was too emotional to try to contact the stoma nurse through the maze of people on the switchboards in the HSE.

It did get easier for my Fiancee over time. Her lifestyle and simple habits like eating and toilet habits changed but she coped. "We" had to change our lifestyles as well like always needing to be near a toilet, nights out were gone, going to restaurants was a trip rarely even considered.

On numerous occasions they suggested we both see a phyciastric of sorts as they claim most people need the services of one. We declined but looking back over the past year I can understand why it can be a good option for some.

Are you alone? You are far from alone. I mentioned a few posts back that it is not until you have Chrons and start talking to people about it that you quickly realise how many people out there have had it or have it and have had or will have stomas, either permanent or temporary.

My mothers best friends ex husband has a stoma and treats himself very very very badly I understand. He acts as though he doesnt have one and can often be found being asked by the barman to "go home and clean himself".

There are some people who have accepted it and continue to swim, jog, rugby etc etc.

There are some who change their lifestyles and are comforted by it.

Last week I had a voluntary colonoscopy. "Dear god, why :eek:"(you might ask) as I didn't want to have anything creep up on me like my Fiancee and her sister. I don't have anything medically wrong with me but wanted it checked out anyway. Cost me a pretty penny too I might add.

If you had spent the 2.5 months like my Fiancee in the 15 bed surgical ward like she did last August then you would realise there are SOO many people with Stomas, and many many people with Stoma issues that YOU are not alone.

We liked this website

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

The_Conductor · 02-08-2011 11:18am

Surgery declining among Crohn's disease patients

Gastroenterology 2011; 141: 90–97

Free Abstract:

The team also found an increased use of specialist care in the treatment of CD since 1996. These findings suggest that the medical management of CD over the past several decades has "evolved," remark Geoffrey Nguyen (University of Toronto, Ontario, Canada) and colleagues in the journal Gastroenterology.

CD - a form of inflammatory bowel disease - often results in impaired quality of life and frequent surgery, explain the authors. However, some studies have suggested that CD-related surgery might have declined in the past couple of decades, given the frequent use of immunomodulatory therapy.

Using data from a large provincial database in Canada, Nguyen and colleagues performed a retrospective study of 3403 CD patients, who were diagnosed with the condition between 1988 and 2008, to investigate factors that might affect long-term outcomes. The patients were stratified into three cohorts: those diagnosed before 1996 (cohort 1); those diagnosed between 1996 and 2000 (cohort 2); and those diagnosed after 2001 (cohort 3).

The team found that the 5-year risk for surgery declined significantly over time, from 30% for those treated before 1996 to, 22% for those treated between 1996 and 2000, and 18% for those treated after 2001.

Patients in cohort 3 were 43% less likely to undergo surgery compared with those in cohort 1. Similarly, patients in cohort 2 were 28% less likely to undergo surgery than those in cohort 1.

Overall, 88% of patients in cohort 3 were seen by a gastroenterologist, whereas just 53% of patients in cohort 1 were treated by a specialist, note Nguyen et al, who add that a higher prevalence of visits to a gastroenterologist within the first year of diagnosis was associated with a reduced need for surgery.

This association between early gastroenterology care and lower risk for surgery was most evident 2 years after diagnosis, they say.

The researchers conclude that specialist care was likely part of the reason for the increase in surgery-free survival observed in the study..

MedWire (www.medwire-news.md) is an independent clinical news service provided by Springer Healthcare Limited. © Springer Healthcare Ltd; 2011

SusieBoozie · 02-08-2011 11:48pm

Beer Baron wrote: »

Suzanne,

I can only try to speak for my Fiancee but I think, as a partner, I feel everything that she does emotionally at least.

Her Ileostomy was temporary and she had it 10.5 months. She didn't quite slip into a coma but came close to it. She picked up an infection and came close to having a drain put into her back to drain fluid from her pelvic region. She struggled with the stoma like most. It "burst" numerous times in bed and a few times at work. She had to keep a bag under the desk with a change of clothes just in case. She had issues with it sticking to her skin, especially after a shower when her skin would be different. Her Stoma nurse selected the right size back in August 2010 and she never needed one re-modelled. On two occassions in the 10 months I had to ring the stoma nurse to get her to call my Fiancee who was at home with "issues" with the bag and was too emotional to try to contact the stoma nurse through the maze of people on the switchboards in the HSE.

It did get easier for my Fiancee over time. Her lifestyle and simple habits like eating and toilet habits changed but she coped. "We" had to change our lifestyles as well like always needing to be near a toilet, nights out were gone, going to restaurants was a trip rarely even considered.

On numerous occasions they suggested we both see a phyciastric of sorts as they claim most people need the services of one. We declined but looking back over the past year I can understand why it can be a good option for some.

Are you alone? You are far from alone. I mentioned a few posts back that it is not until you have Chrons and start talking to people about it that you quickly realise how many people out there have had it or have it and have had or will have stomas, either permanent or temporary.

My mothers best friends ex husband has a stoma and treats himself very very very badly I understand. He acts as though he doesnt have one and can often be found being asked by the barman to "go home and clean himself".

There are some people who have accepted it and continue to swim, jog, rugby etc etc.

There are some who change their lifestyles and are comforted by it.

Last week I had a voluntary colonoscopy. "Dear god, why :eek:"(you might ask) as I didn't want to have anything creep up on me like my Fiancee and her sister. I don't have anything medically wrong with me but wanted it checked out anyway. Cost me a pretty penny too I might add.

If you had spent the 2.5 months like my Fiancee in the 15 bed surgical ward like she did last August then you would realise there are SOO many people with Stomas, and many many people with Stoma issues that YOU are not alone.

We liked this website

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

Hi,thanks a million for your post.I also have an amazing partner! your partner is very lucky to have you!

Ah the leaks,the bursts the waking up during the night and being destroyed! i know exactly what your talking about! Mines permanent,maybe thats why i hate it,if i new i might have a chance to get rid of it i might except it more!maybe?

I was offerd no counselling,i do have a regular stoma nurse but no one has asked me how i feel about it,the surgeons are made of stone i think, the nurse is just always busy and trys to fit me in!

I do try and keep fit on a day to day and i'm also working but in the back of my mind or when i look down i'm reminded daily of the bag, not a nice feeling!

Maybe, eventually i will get to grips with it as i'm only 28 so ive a long haul to go,especailly when ive just been told the crohns is back with attitude!its never a dull moment with crohns let me tell ye!

thanks again

Ladjacket · 03-08-2011 12:18pm

Do any of you guys have a particular food that you need to stay away from? I have been diagnosed for 18 months now and have yet to find anything that has troubled me. And there have been times that I admit my diet has been ridiculously bad. Fast food, chocolates, crips etc. There was one instance about 3 months ago where I had peppers in a pasta and felt odd for about a day and a half, diarrohea etc.

Just wondering if there are any foods that you guys just think..."No thanks!"

Berty · 03-08-2011 1:06pm

SusieBoozie wrote: »

Hi,thanks a million for your post.I also have an amazing partner! your partner is very lucky to have you!

Your "support network" is the most important thing. My partner had the wind knocked out of her self esteem because of it. Who would I be if I wasn't supportive?

SusieBoozie wrote: »

Ah the leaks,the bursts the waking up during the night and being destroyed! i know exactly what your talking about! Mines permanent,maybe thats why i hate it,if i new i might have a chance to get rid of it i might except it more!maybe?

My partners may be gone, hopefully forever, but she is left with the marks to prove to everybody that she once had it. There is no amount of Bio Oil in the world that can cover up a "knife wound" from your belly button to your navel or the incision point where the stoma was.

SusieBoozie wrote: »

I was offerd no counselling,i do have a regular stoma nurse but no one has asked me how i feel about it,the surgeons are made of stone i think, the nurse is just always busy and trys to fit me in!

My partner was being supported by Mary the Stoma Nurse in the regional hospital Limerick. She is a very nice woman and I had spoken to her myself a few times. When my partner was getting the operation I was at home for 2.5 months alone(poor me) and I called a woman who ran a Stoma support group of sorts.

Ileostomy, Colostomy and
Internal Pouch Support Group
29 Springdale, Tullow Road, Carlow
Tel: 087 699 29 16

She was very frank with me and told me a lot of things in one of those "worst case scenario" type of ways but if you want somebody knowlegable then call her.

SusieBoozie wrote: »

Maybe, eventually i will get to grips with it as i'm only 28 so ive a long haul to go,especailly when ive just been told the crohns is back with attitude!its never a dull moment with crohns let me tell ye!

My partner is 32 now and was, like you, very young to have such an operation. "What doesn't kill you"..........................

brokenice · 03-08-2011 1:30pm

After years of intestinal trouble, I'm beginning to think that this is what I could be suffering from. Docs have never been able to help me. You name it, I've done it, spasmonal, had endoscopy and colonoscopy, avoided so many foods, seen kinesiologists, counselling, meditiation...In the last 3 weeks, I've barely left the house, things have flared up so badly, it's so debilitating. Going to see a gastroenterologist on Monday. If he can't do anything...well, I'm seriously f**ked!

The_Conductor · 03-08-2011 1:32pm

Ladjacket wrote: »

Do any of you guys have a particular food that you need to stay away from? I have been diagnosed for 18 months now and have yet to find anything that has troubled me. And there have been times that I admit my diet has been ridiculously bad. Fast food, chocolates, crips etc. There was one instance about 3 months ago where I had peppers in a pasta and felt odd for about a day and a half, diarrohea etc.

Just wondering if there are any foods that you guys just think..."No thanks!"

I have two things to stay away from- anything with MSG in it (sigh, I love Chinese) and anything with maize in it......

I find that my tolerance for certain foods can be quite high if I'm feeling well- but if I'm under the weather at all- a bowl of cornflakes could floor me for days.......

I don't think there is a standard that you can hold up for people with Crohn's- different people seem to have different trigger foods- perhaps there might be some commonalities- such as alcohol- but in the main, it really is that you have to learn for yourself what you're capable of tolerating, and what you just can't eat.........

The next issue is knowing that you're not able to eat something- and eating it anyway

:(

LucyBliss · 03-08-2011 4:12pm

Suzanne, I've had a permanent illeostomy for the past three and a half years. I know that feeling of waking up with a leakage. I also have a dog who one day leapt up on top of and landed smack on the bag and well, let's just say that whatever tests they do to make sure these things are robust, a ten kilo dog coming at it full throttle clearly was not included!! Heh. I've also had to change it on a moving bus when I was coming back from a Brownie event (I'm a Brownie and Girl Guide leader) and when I came home, I had to have a good cry to restore my nerves.

Though to be honest with you, I don't mind the leakages so much - don't get me wrong, yes they are damn annoying and sometimes they happen when my stoma is going a mile a minute and I want to shriek 'WILL YOU CALM THE HELL DOWN SO I CAN REPLACE THIS THING AND GO BACK TO WHAT I WAS DOING???!' because I'm classy that way - but I had so much trouble with incontinence before I got the stoma and the embarrassment and humiliation of it happening when out in public and I'm only in my thirties and then there was the pain and I couldn't eat but I was bloated on steroids; for me, compared to that, a little bit of leakage ain't so bad to clean up.

I have a huge honkin' scar because my wound reopened a week after surgery and had to be restapled and then there were two big gaps that wouldn't close and they had to be packed with whatever they use and the dressing changed twice a day so it's wider than most people end up with. I don't care though. I consider it a badge of honour, if that doesn't sound too ridiculous, that I went through some tough times but hey, I'm still here and I can still do stuff. I went on camp with my Girl Guides last month. I go on day trips and in October, I'm going to Boston to visit my god daughter. It'll be my first solo trip with the stoma so I'm nervous and excited about it.

You're right though, they don't give you any counselling about dealing with a stoma, apart from 'here's a book, now go home'. I had some very bad weeks when I came home first. I thought to myself, even though this was something I was happy to have I really didn't see how I was going to cope with it on a practical basis. Even changing the bag would make me hyperventilate. But now I don't care who knows I have it or who sees the scar. Actually, I like to bust out the scar come Christmas and birthdays to see if it'll make the family buy me more stuff. Hasn't happened yet but you never know.

My feeling is that yes of course, it's a lot to deal with. I would never dispute that and sometimes I do feel down about the fact that I have this thing and it's never going away. But then I think about all the things I can do now and places I can go to. I feel I've gotten a second chance at living my life without worrying that the piece of toast I ate two days ago is going to explode out of me at the worst possible time.
And let's not forget, we have a serious condition and went through a major operation and here we are on the other side and that makes us pretty damn awesome! We're still going when other people get a headache and have to take to the bed for hours!
I'm also sorry that your Crohns is acting up again and if you need to vent or talk or anything like that, feel free to contact me. I've said this before here, but I do believe that those of us who are able should support anyone else who needs it because who knows better than us how hard it can be.

Amusing story: My mother and I often take the dogs to Coole Park outside Gort. It's a lovely place and the dogs get a good walk.
Now the day after New Year's Day, we took the dogs out to Coole Park and did our walk. At the end, I went to the toilets but they were closed because of burst pipes but the ostomy bag was quite full and I was afraid that it might leak and it was a 40 minute drive home. So I was a bit "Hmm, what to do now" when my mother produced the small black plastic bags for clearing up dog waste on our walks and said "Here you go, empty away! I'm such a responsible owner, I have bags for everybody who might need them!" I stared at her and we both burst out laughing. I went behind the toilets to perform the ablutions - lord, that sounds seedy - and my mother and the dogs stood watch. I had my hand sanitizer in my bag and everything was hunky dory. My mother then gave me the dog's waste bags to carry with my own and she dubbed me "Sh*t Bag Girl" and cracked herself up and then I started laughing because she was laughing so much.
You have to make your own fun.
So that's how easy having a bag has made my life. I just thought I'd share that because if we can't find humour in these situations, then we're in big trouble!

SusieBoozie · 03-08-2011 5:46pm

LucyBliss wrote: »

Suzanne, I've had a permanent illeostomy for the past three and a half years. I know that feeling of waking up with a leakage. I also have a dog who one day leapt up on top of and landed smack on the bag and well, let's just say that whatever tests they do to make sure these things are robust, a ten kilo dog coming at it full throttle clearly was not included!! Heh. I've also had to change it on a moving bus when I was coming back from a Brownie event (I'm a Brownie and Girl Guide leader) and when I came home, I had to have a good cry to restore my nerves.

Though to be honest with you, I don't mind the leakages so much - don't get me wrong, yes they are damn annoying and sometimes they happen when my stoma is going a mile a minute and I want to shriek 'WILL YOU CALM THE HELL DOWN SO I CAN REPLACE THIS THING AND GO BACK TO WHAT I WAS DOING???!' because I'm classy that way - but I had so much trouble with incontinence before I got the stoma and the embarrassment and humiliation of it happening when out in public and I'm only in my thirties and then there was the pain and I couldn't eat but I was bloated on steroids; for me, compared to that, a little bit of leakage ain't so bad to clean up.

I have a huge honkin' scar because my wound reopened a week after surgery and had to be restapled and then there were two big gaps that wouldn't close and they had to be packed with whatever they use and the dressing changed twice a day so it's wider than most people end up with. I don't care though. I consider it a badge of honour, if that doesn't sound too ridiculous, that I went through some tough times but hey, I'm still here and I can still do stuff. I went on camp with my Girl Guides last month. I go on day trips and in October, I'm going to Boston to visit my god daughter. It'll be my first solo trip with the stoma so I'm nervous and excited about it.

You're right though, they don't give you any counselling about dealing with a stoma, apart from 'here's a book, now go home'. I had some very bad weeks when I came home first. I thought to myself, even though this was something I was happy to have I really didn't see how I was going to cope with it on a practical basis. Even changing the bag would make me hyperventilate. But now I don't care who knows I have it or who sees the scar. Actually, I like to bust out the scar come Christmas and birthdays to see if it'll make the family buy me more stuff. Hasn't happened yet but you never know.

My feeling is that yes of course, it's a lot to deal with. I would never dispute that and sometimes I do feel down about the fact that I have this thing and it's never going away. But then I think about all the things I can do now and places I can go to. I feel I've gotten a second chance at living my life without worrying that the piece of toast I ate two days ago is going to explode out of me at the worst possible time.
And let's not forget, we have a serious condition and went through a major operation and here we are on the other side and that makes us pretty damn awesome! We're still going when other people get a headache and have to take to the bed for hours!
I'm also sorry that your Crohns is acting up again and if you need to vent or talk or anything like that, feel free to contact me. I've said this before here, but I do believe that those of us who are able should support anyone else who needs it because who knows better than us how hard it can be.

Amusing story: My mother and I often take the dogs to Coole Park outside Gort. It's a lovely place and the dogs get a good walk.
Now the day after New Year's Day, we took the dogs out to Coole Park and did our walk. At the end, I went to the toilets but they were closed because of burst pipes but the ostomy bag was quite full and I was afraid that it might leak and it was a 40 minute drive home. So I was a bit "Hmm, what to do now" when my mother produced the small black plastic bags for clearing up dog waste on our walks and said "Here you go, empty away! I'm such a responsible owner, I have bags for everybody who might need them!" I stared at her and we both burst out laughing. I went behind the toilets to perform the ablutions - lord, that sounds seedy - and my mother and the dogs stood watch. I had my hand sanitizer in my bag and everything was hunky dory. My mother then gave me the dog's waste bags to carry with my own and she dubbed me "Sh*t Bag Girl" and cracked herself up and then I started laughing because she was laughing so much.
You have to make your own fun.
So that's how easy having a bag has made my life. I just thought I'd share that because if we can't find humour in these situations, then we're in big trouble!

Wow,thanks a million!you made me smile and also made me feel like i wasnt alone!

i do try and laugh at myself,i am getting better at it especailly when a good friend told my i'd a high tech built in dyson hoover bag lol couldnt help but laugh!

I really apprieciate you telling me your story

I know i will cope well ive no choice,its just hard some times when your out enjoying life and smack bang your coverd in poo!:mad:
I tell people but when i get to know them.seeing there reaction amazes me,some actually try and look for the bag,they dont even realise there staring at your croch while trying to find it.

i will cope so i keep telling myself,i do love not running to the bathroom 20 times a day!or i dont miss the cramps even tho i still get them,definalty not as bad as what they were.couldnt walk sometimes.
I do forget how serious Crohns is and have to remind myself how close i came to being 6 feet under last year.Your right we are quite Awesome!:D

thanks again for your help and i hope your keeping well and good luck with your trip to boston

xxx

LucyBliss · 03-08-2011 6:16pm

SusieBoozie wrote: »

i will cope so i keep telling myself,i do love not running to the bathroom 20 times a day!or i dont miss the cramps even tho i still get them,definalty not as bad as what they were.couldnt walk sometimes.
I do forget how serious Crohns is and have to remind myself how close i came to being 6 feet under last year.Your right we are quite Awesome!:D

thanks again for your help and i hope your keeping well and good luck with your trip to boston

xxx

I know what you mean about running to the toilet. I didn't know myself after I got the bag and I was able to sit and watch a TV programme in peace. Before that, I had to record everything because I'd either be in and out and missing the bloody plot or else I'd get the start of the show and miss most of the middle and the end! The first film I went to after the surgery, I nearly texted everyone I knew to say that I'd been able to sit in the cinema without any problems or worries for the whole showing.

The thing is though, we know the bag is there but people don't. They're staring because they're trying to figure out exactly where it is. I was convinced that everyone could see it, even if it was practically empty, when I'd be out in town. And then it dawned on me that the Brownies had never picked up on it. Even the times when it might have filled up a bit when we'd be sitting down during a craft and I had to wait a couple of minutes for another leader to take over before I headed to the toilet. I mean, these kids pick up on everything else - new earrings, changes to your hair, your watch,your rings. Hell, I even had one of them tell me I had skinny legs one day! But not one has ever pointed and said, hey what's that thing there on you?!

Isn't being cramp free the best? Having such ease of movement - it really is the little things that make life better. *sigh*

CarrickMcJoe · 03-08-2011 6:31pm

+1 on all you said there Lucy. I have the bag 14 years and sometimes think its noticeable.
Just checked that site Beer Baron reccommended and there a thing called a Stealth Belt (just type it into Google) and I am seriously contemplating buying one. They look the business.
There are a lot of people who have far worse problems than me out there.

LucyBliss · 03-08-2011 6:52pm

That stealth belt looks very handy. Thanks for that, CarrickMcJoe.

And another tip for the ladies (sorry lads), I also read on another site that for tops that might lift up or jeans that are slightly lower waisted, those belly bands that pregnant women wear can be just the ticket for covering up the top of the bag. It just looks like the bottom of a camisole under whatever shirt or t-shirt you're wearing.

Corkblowin · 03-08-2011 6:52pm

SusieBoozie wrote: »

To all the people who have an Ileostomy,Does it get easier? Will i ever except it?i have it only a year and have had it refashioned 3 times already due to the stoma not settling and skin going mental.

To be honest i hate the thing.anyone feel the same as me or am i out on that boat alone?

Suzanne
xxx

Hey a susie, glad the previous posters comments have cheered you somewhat, I'm just adding my 2 cents to that. I had mine at 27 (12 years ago now) & for a while though I'd never be used to it. But you do acclimatise and forget it's there believe it or not. My realisation of how it had become an unnoticed part of my life was one night when I somehow managed to bring a young woman home after a nightclub and it was only when she spotted the scar that I remembered!!

cue quick anatomy lesson & luckily for me she was cool about the whole thing - we're still friends & still joke about it

I was the most nervous person about it so if I can get so used to it anyone can

Yes there's still the odd leakage, usually at inopportune moments, but over time you get a sense of what foods or circumstances can cause it ( saunas get me nearly every time) & can plan accordingly. & yes every few months I curse the damn thing & wish it wasn't there - but then think back to where I was & I calm down again.

As for the skin, I was the same until things settled down after a few months, and I plagued the stoma nurse trying every sort of appliance until I found one I liked. It has rings on the flange so at least some part of your skin get a break after each change as you can't possibly replace it exactly the same each time.

I suppose in summary - you will get used to it, you'll eventually forget it exists, and as a bonus - no-one can ever blame you for farting!!

(maybe that's more of a guy thing:) )

SusieBoozie · 03-08-2011 10:02pm

smccarrick wrote: »

I have two things to stay away from- anything with MSG in it (sigh, I love Chinese) and anything with maize in it......

I find that my tolerance for certain foods can be quite high if I'm feeling well- but if I'm under the weather at all- a bowl of cornflakes could floor me for days.......

I don't think there is a standard that you can hold up for people with Crohn's- different people seem to have different trigger foods- perhaps there might be some commonalities- such as alcohol- but in the main, it really is that you have to learn for yourself what you're capable of tolerating, and what you just can't eat.........

The next issue is knowing that you're not able to eat something- and eating it anyway :(

Hi
Yeah i have to stay away from green foods like cabbage,peas broccali and so on.also greasy food oh and beans lol

But some days i could eat these things and id be grand all depending on how the crohns is,i find some fruit very hard because of the acid like apples.

but everyones different,you will know yourself on how your feeling that day and how your body reacts.

xxx

SusieBoozie · 03-08-2011 10:09pm

Corkblowin wrote: »

Hey a susie, glad the previous posters comments have cheered you somewhat, I'm just adding my 2 cents to that. I had mine at 27 (12 years ago now) & for a while though I'd never be used to it. But you do acclimatise and forget it's there believe it or not. My realisation of how it had become an unnoticed part of my life was one night when I somehow managed to bring a young woman home after a nightclub and it was only when she spotted the scar that I remembered!! cue quick anatomy lesson & luckily for me she was cool about the whole thing - we're still friends & still joke about it I was the most nervous person about it so if I can get so used to it anyone can

Yes there's still the odd leakage, usually at inopportune moments, but over time you get a sense of what foods or circumstances can cause it ( saunas get me nearly every time) & can plan accordingly. & yes every few months I curse the damn thing & wish it wasn't there - but then think back to where I was & I calm down again.

As for the skin, I was the same until things settled down after a few months, and I plagued the stoma nurse trying every sort of appliance until I found one I liked. It has rings on the flange so at least some part of your skin get a break after each change as you can't possibly replace it exactly the same each time.

I suppose in summary - you will get used to it, you'll eventually forget it exists, and as a bonus - no-one can ever blame you for farting!! (maybe that's more of a guy thing:) )

Hi, lol
its nice to know that at some stage ill forget its there! Oh i think it is a bloke thing,hes already talking about getting a dog because of this lol:D

Im still trying out new bags and appliances.they seem to work for awhile then give up totally then on to a new one.My skin doesnt know whats going on!Either do i lol

Thanks for taking the time to write me

xxx

LucyBliss · 04-08-2011 12:02am

It can take a while to get an appliance that suits you. It took me about a year to get the one that I'm using now. Lots of mishaps, lots of trips to the stoma nurse and to the pharmacy. It leaked one night in a pub. I was fit to be tied. I even had to change my pharmacy because the original one hadn't a clue about stoma appliances and the owner told me that my appliances weren't available on the medical card, which they so were! In the end I had to ring the company to ring the guy to tell him what he needed to know. That's not my job!! So it was very frustrating and after he got my order wrong for the umpteenth time I changed to one where they couldn't be nicer and where they insist I let them know when I'm down to a few appliances so they can have them waiting for me and to decrease the chances of me running out.

But again, this is annoying enough when you're in good health. When you just want to be fixed already and be able to live your life, you don't expect to have to worry about what fits best and how to get it. I don't mind telling you the thought of having to go back to the stoma nurse used to make me cry. Not because they were mean or hard to deal with, far from it, but it felt like another complication and I was already emotionally raw from steroids, having Crohns in the first place and the aftermath of a major surgery, and that was before I even got to contemplating the practicalities of a stoma.

But things are a lot better now and yes, you do get used to it. I spoke to another woman with a stoma prior to the surgery and she told me that changing the bag and living with it became as ordinary as brushing your teeth. My first month out of hospital, I was ready to call her up and tell her that she was the biggest liar who'd ever lied! But she was right. I'm as used to it now as I am washing my hair. The only big problem I've ever had with it was the morning I changed it, put all the bits into the nappy bag and tied it, turned to get something and looked around to realise one of the pups had run off with it and was about to tear into it like it was Christmas! I had to boot it after her and grab it before the floor got redecorated!

Pet · 05-08-2011 12:35am

Oh my god...I haven't laughed so hard in days. Weeks, possibly!

Another endoscopy coming up, this time it's a double balloon one, whatever that means. Klean Prep, my old foe, we meet again...

LegacyUser · 07-08-2011 9:10pm

hi i have been suffering with crohns disease for 30 years or so, and 2 years i gave smoking
and since then i have hospitalised twice to recieve intervenis injections every six hours
for 10 days on both occasions (steroids) and then sent home on imuran 100ml and asacolan
400ml three times daily.
now the disease has started to play up again ,and im back on oral steroids which is not hitting
the condition atall, so i dont know what to do

SusieBoozie · 08-08-2011 11:30pm

CarrickMcJoe wrote: »

+1 on all you said there Lucy. I have the bag 14 years and sometimes think its noticeable.
Just checked that site Beer Baron reccommended and there a thing called a Stealth Belt (just type it into Google) and I am seriously contemplating buying one. They look the business.
There are a lot of people who have far worse problems than me out there.

Thanks for the recommendation of that belt,gotta have one

SusieBoozie · 08-08-2011 11:34pm

Pet wrote: »

Oh my god...I haven't laughed so hard in days. Weeks, possibly!

Another endoscopy coming up, this time it's a double balloon one, whatever that means. Klean Prep, my old foe, we meet again...

Oh you should ask for picalax,so much easier to take!

SusieBoozie · 08-08-2011 11:43pm

LucyBliss wrote: »

It can take a while to get an appliance that suits you. It took me about a year to get the one that I'm using now. Lots of mishaps, lots of trips to the stoma nurse and to the pharmacy. It leaked one night in a pub. I was fit to be tied. I even had to change my pharmacy because the original one hadn't a clue about stoma appliances and the owner told me that my appliances weren't available on the medical card, which they so were! In the end I had to ring the company to ring the guy to tell him what he needed to know. That's not my job!! So it was very frustrating and after he got my order wrong for the umpteenth time I changed to one where they couldn't be nicer and where they insist I let them know when I'm down to a few appliances so they can have them waiting for me and to decrease the chances of me running out.

But again, this is annoying enough when you're in good health. When you just want to be fixed already and be able to live your life, you don't expect to have to worry about what fits best and how to get it. I don't mind telling you the thought of having to go back to the stoma nurse used to make me cry. Not because they were mean or hard to deal with, far from it, but it felt like another complication and I was already emotionally raw from steroids, having Crohns in the first place and the aftermath of a major surgery, and that was before I even got to contemplating the practicalities of a stoma.

But things are a lot better now and yes, you do get used to it. I spoke to another woman with a stoma prior to the surgery and she told me that changing the bag and living with it became as ordinary as brushing your teeth. My first month out of hospital, I was ready to call her up and tell her that she was the biggest liar who'd ever lied! But she was right. I'm as used to it now as I am washing my hair. The only big problem I've ever had with it was the morning I changed it, put all the bits into the nappy bag and tied it, turned to get something and looked around to realise one of the pups had run off with it and was about to tear into it like it was Christmas! I had to boot it after her and grab it before the floor got redecorated!

I cannot thank you enough

you have made me feel that im not alone in all this madness.I thought i was the only one who cried going to see the stoma nurse :mad: i even hate ringing!

i know ive a long haul to go as ive to get another opp as the crohns is back and i also think its in my stomach now.Which ive only ever had it in the colon but now thats gone it seems to be popping its nasty head up every were

I am usually very positive but just finding it hard at the min but i will find my feet as ive had this Illness 14 years and ive gotten threw it so no different now,well maybe abit different

thanks again for your help and advice

xxxxxxxx

kildareash · 09-08-2011 4:10pm

@lucybliss - your last few posts have really made me lol!

I love your attitude Lucy.
Sometimes people look at us strangely when we joke about things like this, although it is a serious situation sometimes the only alternative is to cry and I know which one I'd prefer to do!

When my OH was in hospital, his friends bought him 'Operation'! Or when he first had surgery another friend asked him how he was feeling. He looked us straight in the eye and said "kinda empty inside, like something is missing."
We didn't know how to answer, until he burst out laughing!

My OH has a stoma for two years now, but he had major complications after surgery and spent the first nine months in hospital.
All is good now tho, he does occassionally have leaks. They have mainly been at night time, strangely enough and I think once since he went back to work last year he's had to do a quick change in work.
He does need more surgery to remove his stump as it started to cause problems last year, but as he had 5 surgeries between June 09 and Jan 10, they're hoping to put it off for as long as is safe to do so.

It does take time to figure out the right appliance for yourself. He was lucky to have two great stoma nurses (the one in the hospital and our local one), as his stoma kept changing shape.

@susieboozie - sorry to hear the chrons is flaring up again. It doesn't matter how positive you are, sometimes things just get on top of you. I hope everything goes well for you with your next op.

Just on the stealth belt - my OH orders black waistbands from a company called comfizz. He wouldn't be without them. It adds another layer in the event of leak and his bag is covered if his t-shirt does rise up a bit.
I've washed them over and over again and they haven't lost their elasticity or shape, still look brand new and he has them over a year now.

Crohn's Disease

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