New to forum, diagnosed in last month, advice wanted

[palwe]

new to forum, diagnosed in last month, advice wanted

hi,

just joined the forum today, but was very reluctant to. my stories in the other bit of the forum if your interested (cant really see people being, as from what ive read theres loads of 'us', and im not really a special case!).

anyway, after my first 'flare up' and op, waiting for my colonoscopy to confirm crohns left a lot of time to start reading the net - the worst thing you can do - and scaring the **** out of myself.

i stumbled on this forum and it did just the trick! i avoided it since being diagnosed a month ago, until now. ive began to accept im a 'crohnie', even though im symptom free at the moment, touch wood.

just wanted to ask a few questions, and im not sure if i should be asking them seperately in their appropriate forum sections so forgive me if i should. here goes:

what can i expect in future, having had a resection already at 23?

what percentage of crohnies have a bowel bag (my specialist IBD wouldnt answer me, even when i pressed for an answer)?

what foods should i be avoiding other than nuts, mushrooms, sweetcorn, skins (veg/animal) and hot/spicy food?

my gastro specialist (well, the guy who did my colonoscopy) has only put me on metronidazole, even though theres a patch of mild inflammation returned at the terminal ileum (the bit that was operated on in july). should i be on more? what might he put me on when i see him next friday?

should i be exercising? i like to use a cross trainer, and love the feeling after exercise and a shower (i used to do 4 hours a week at high intensity without any problems...). edit: i dont mean right now but when im 'better' (its been 6 weeks since op and i still have an open wound/hematoma).

how likely am i to have another operation, having had one already?

what changes should i be making at work, and what changes should i be ensuring my employer makes? my job is stressful and i feel thats what caused all this (chasing a promotion that was being made difficult to get on purpose). i have a union representative coming to see me at home in a week or so regarding my illness (and who believes its stress thats caused my flare up, obviously no proof though). they want to make arrangements for/around me. at least my union rep understands me (theres other people the rep knows who have crohns too).

hope you can answer that lot thanks in advance for your time.

 

[meaculpa]

hi there

can't really answer your questions but do understand the uncertainty/fear/anxiety your feeling trying to come to grips with having crohns.

one of my concerns to is about the future and the progression of this disease and what to expect. i've come to realise from talking to others and reading other peoples stories that there is absolutely no way to tell. some people on here get diagnosed, resected then absolutely nothing for years and years. alot of people get great remission from long term medication, others have symptoms that they can manage, others seem to struggle to get a decent length of remission and do require numerous hospital admissions and surgeries.

i reakon they will probably put you on some long term medication to prevent further episodes but will do it once the risk of infection is over from your surgery. most of the drugs have an effect on your immune system and if you have an open wound and are on antibiotics it could be an issue.

i can't offer any advice about your work but can share my experience.
i was really sick about 3 years ago (prior to diagnosis which took along time). i was in constant contact with my boss and kept her in the loop with what was happening. ended up having to have about 3 months off work. when i returned i reduced my hours to 2 days a week for 4 months. after 4 months i still wasn't upto working fulltime so permanently reduced my hours to 3 days a week. i am still only permanent parttime (3 days) but as i'm a nurse and there is always extra shifts going, i can work fulltime when i am up to it and when i'm not i just do 3. it works really well for me and the ward.
i must say that i prepare for the worst and hope for the best.... i plan holidays but don't use much of my holiday leave. the past few years i have had to use alot of holiday leave due to sickness (i only get 6 days sick leave a year). i'm really lucky that work is understanding and flexible. when i'm well i work my arse off. i think to relieve some of the guilt i have when i'm sick and can't do so much. being only part time too you aren't missed as much as the fulltimers.
i guess having a chronic illness makes you sit back and evaluate whats important in life too... fulltime work... stress... is it really worth it? lifes to short and i reckon i need to live for today (and tomorrow... i'm off to niue to swim with the whales!!! so excited just had to throw that in there!)

i really hope that you heal well, keep well and manage to make work work for you

tracy xx

 

[ameslouise]

Hi Palwe - Thanks for giving our forum a look. We hope you find it to be very helpful! You are right, there are lots of us out there. Probably the most important thing to know is that we are all different! And our disease affects us differently!

You ask some very good questions, but because things are so different from patient to patient, unfortunately there are not clear answers...

hi,


what can i expect in future, having had a resection already at 23? Who knows?! This disease is so unpredictable! The best you can do is take good care of yourself, eat well, take your meds, get plenty of rest and hope for the best!!

what percentage of crohnies have a bowel bag (my specialist IBD wouldnt answer me, even when i pressed for an answer)? Don't know the percentage, but plenty of us on the forum do. Check out the Stoma Subforum, and you'll find lots of people (including me) who are thrilled to be shitting into a bag, and living great lives because of it!!!

what foods should i be avoiding other than nuts, mushrooms, sweetcorn, skins (veg/animal) and hot/spicy food? Different for each of us. I can eat just about anything (except very insoluble fiber stuff like barley and wheatberries) as long as I chew. You will have to find your "do" and "do not" list thru trial and error...

my gastro specialist (well, the guy who did my colonoscopy) has only put me on metronidazole, even though theres a patch of mild inflammation returned at the terminal ileum (the bit that was operated on in july). should i be on more? what might he put me on when i see him next friday? There are tons of meds out there. What your doc suggests depends on your history, how advanced your diseases is, what your symptoms are at the time, etc etc...

should i be exercising? i like to use a cross trainer, and love the feeling after exercise and a shower (i used to do 4 hours a week at high intensity without any problems...). edit: i dont mean right now but when im 'better' (its been 6 weeks since op and i still have an open wound/hematoma). Generally, yes! If you are feeling up to it, then continue to exercise! Listen to your body. If you are tired or it affects you negatively, then cut back or change your routine. Discuss with your doc.

how likely am i to have another operation, having had one already? This is unfortunately another thing none of us can predict

what changes should i be making at work, and what changes should i be ensuring my employer makes? my job is stressful and i feel thats what caused all this (chasing a promotion that was being made difficult to get on purpose). i have a union representative coming to see me at home in a week or so regarding my illness (and who believes its stress thats caused my flare up, obviously no proof though). they want to make arrangements for/around me. at least my union rep understands me (theres other people the rep knows who have crohns too). Again, listen to your body. Only you can determine what is "too much" and what you can handle. Also, every country is different when it comes to disability, medical leave, etc. The bottom line is that you need to do what you and your doc feel best, and hopefully your employer will abide by that.


hope you can answer that lot thanks in advance for your time.

Glad you are feeling okay right now. Take it one day at a time and try not to get too caught up in "what ifs" and worrying about the future.

Take care of yourself!!! - Amy

 

[littlefreebird]

was thinking of how to set this out until i saw amy's post above...i'm liking the style so i thought i'd copy!

hi,
what can i expect in future, having had a resection already at 23? Can't really answer this question as everyone is different, some people have remission for many years and some are not so lucky, only time can tell.

what percentage of crohnies have a bowel bag (my specialist IBD wouldnt answer me, even when i pressed for an answer)? i'm not sure on percentage but if i was to take a guess i'd say more than half either have a bag or have been threatened with a bag. i have a bag (i'm 21) got it 8 weeks ago after struggling for 10 years and life now couldn't be better.

what foods should i be avoiding other than nuts, mushrooms, sweetcorn, skins (veg/animal) and hot/spicy food? Whilst the crohn's is in remission, i believe you can eat what you like. people avoid fibre whilst they are flaring but if all is well i honestly wouldn't cut out foods that you like.

my gastro specialist (well, the guy who did my colonoscopy) has only put me on metronidazole, even though theres a patch of mild inflammation returned at the terminal ileum (the bit that was operated on in july). should i be on more? what might he put me on when i see him next friday? I'm not familiar with this drug but if you are not having any symptoms and the dr is happy with crp levels in your blood then there's no reason to be on more meds...more meds lead to more side effects.

should i be exercising? i like to use a cross trainer, and love the feeling after exercise and a shower (i used to do 4 hours a week at high intensity without any problems...). edit: i dont mean right now but when im 'better' (its been 6 weeks since op and i still have an open wound/hematoma). yes, obviously when you have the all clear from your dr that its safe, there's no reason why not.

how likely am i to have another operation, having had one already? only time will tell, nobody knows and all crohnies gone through surgery hope and wish for the same thing.

what changes should i be making at work, and what changes should i be ensuring my employer makes? my job is stressful and i feel thats what caused all this (chasing a promotion that was being made difficult to get on purpose). i have a union representative coming to see me at home in a week or so regarding my illness (and who believes its stress thats caused my flare up, obviously no proof though). they want to make arrangements for/around me. at least my union rep understands me (theres other people the rep knows who have crohns too). i'm not sure, you could answer this question better yourself, what could be done within your work place (that is 'do able') that would make your life easier? things like allowing bathroom breaks when ever needed and days leave to see your dr are examples but in terms of work content, the nature of your work is stressful, not taking on more than you can handle is really the only thing i can think of here.

sorry i haven't been too helpful, you've asked good questions but unfortunatley there's no way of answering them. some crohn's stories you read can make you feel really lucky whilst others go the opposite way. take care. and welcome to the forum. hannah.

 

[palwe]

thanks for the responses, really appreciated. ill just have to hope i continue to be a mild case... though having had one operation, im sure these plenty opportunities for me to have yet more problems.

anyway, it hasnt stopped either of you two being gorgeous, if you dont mind be saying haha

laters.

 

[LindaS]

I thought I'd also give a response as I've had Crohn's for so long and can give you a bit longer term retrospective.

what can i expect in future, having had a resection already at 23?
I first got sick when I was 18, and I've had two resections. I've had long periods of remission as well as periods of flares. I've been able to have a career as an attorney and was able to give birth to a healthy son.
what percentage of crohnies have a bowel bag (my specialist IBD wouldnt answer me, even when i pressed for an answer)?
I don't have a bag, and have never had one, or had one threatened. It is always a possibility, but from what I've seen here, it usually seems like a relief when people get one, because it is needed.

what foods should i be avoiding other than nuts, mushrooms, sweetcorn, skins (veg/animal) and hot/spicy food?
for everyone it is different. When I'm in remission, I can eat pretty much whatever I want without consequences. Now that I'm flaring, I find I do better eating low fiber, low fat foods.

my gastro specialist (well, the guy who did my colonoscopy) has only put me on metronidazole, even though theres a patch of mild inflammation returned at the terminal ileum (the bit that was operated on in july). should i be on more? what might he put me on when i see him next friday?
There are lots of medications for Crohn's. My experience was that they tried the drugs with the least side effects first, and when they didn't work, my doctor and I experimented with various medications. It can take a while to find the right dosage and medication, and many of the Crohn's medications can take a while to reach full effectiveness

should i be exercising? i like to use a cross trainer, and love the feeling after exercise and a shower (i used to do 4 hours a week at high intensity without any problems...). edit: i dont mean right now but when im 'better' (its been 6 weeks since op and i still have an open wound/hematoma).
That would be something to ask your doctor. When I had an open wound following my second surgery, I was told not to, but your doctor could have different recommendations.

how likely am i to have another operation, having had one already?

No one can tell the future, but it is a very real possibility.

what changes should i be making at work, and what changes should i be ensuring my employer makes? my job is stressful and i feel thats what caused all this (chasing a promotion that was being made difficult to get on purpose). i have a union representative coming to see me at home in a week or so regarding my illness (and who believes its stress thats caused my flare up, obviously no proof though). they want to make arrangements for/around me. at least my union rep understands me (theres other people the rep knows who have crohns too).

It really depends on your job and your condition. I am currently on disability because of my symptoms, but I've worked for years with my Crohn's