Crohn's Disease

HigginsJ

Bodhidharma wrote: »

Hi everyone. I was diagnosed with Crohn's Disease yesterday. I was expecting it as I had surgery a few weeks ago and it was suggested by the surgeon that it looked like Crohn's as I had quite a few strictures in the small intestine, of whch a part was removed.

I have only begun my research and I intend to read through this entire thread, but I was wondering if perhaps some people could give me a short response about how they are living with the disease, the initial difficulties you faced, and how you look at it now. Any help would be much appreciated and I am glad to see that there is a thread for this as it looks to be very helpful.

I have not yet met my gastroenterologist since the surgery so I have not been told what treatment I will be given.

I had Op 6 months agoand have been great since. On imunosuppresants and started them about 6 weeks after the Op. All well. Getting b-12 injections every 4/6 weeks and can get rather tired if i leave too long between them. My diet is back to normal (not brave enough to try nuts as they nearly killed me last year)

After the Op the only difficulties were the Op pain for the 1st couple of weeks. Injections are fine. Getting regular blood tests. Hated needles a year ago but completly used to them now. Taking regular excerise and no issues. Have not played contact sport since the Op so that is an unknown.

Hope all is well with you. Get to your Gastroenterologist and get on treatment. Lots of websites with tips and this thread is great for support.

Pepe LeFrits

Bodhidharma wrote: »

Hi everyone. I was diagnosed with Crohn's Disease yesterday. I was expecting it as I had surgery a few weeks ago and it was suggested by the surgeon that it looked like Crohn's as I had quite a few strictures in the small intestine, of whch a part was removed.

I have only begun my research and I intend to read through this entire thread, but I was wondering if perhaps some people could give me a short response about how they are living with the disease, the initial difficulties you faced, and how you look at it now. Any help would be much appreciated and I am glad to see that there is a thread for this as it looks to be very helpful.

I have not yet met my gastroenterologist since the surgery so I have not been told what treatment I will be given.

I was diagnosed when I was 9 or 10 and was pretty sickly during my teens. I was on a variety of medication (steroids, immuno-suppressants etc) and nutritional supplements as my growth was delayed/stunted (I'm not sure how you can really determine 'stunted') and I was very underweight. I got better though in my late teens/early 20s and have been effectively in remission for several years. I'm 28 now and the healthiest I've ever been. I eat everything, am physically active and look and feel well. I've no dietary restrictions and I suffer from only occasional, mild symptoms.

Though on that note, does anyone know if Dr O'Donoghue is still working in Vincents? I ought to go for a check-up.

The_Conductor

Pepe LeFrits wrote: »

Though on that note, does anyone know if Dr O'Donoghue is still working in Vincents? I ought to go for a check-up.

Hiya- he no longer does the public clinic in St. Vincents, but continues to do his private clinic in the Private hospital. I think Hugh Mulcahy does the clinic in the public hospital.

Pepe LeFrits

k, thanks

Ciara D

The ISCC Youth Group is now up and running and is looking for members to join us. So if you are aged up to 30 (or thereabouts!) we want to hear from you! Our aim is to bring together younger people with IBD so you know you are not alone.

One of the things people miss most is having others that they can talk openly with about their experiences and to learn about different ways of coping with the condition. We have all sorts of plans to change this. So get in touch if you want to be part of it... or please pass this message on to other young people you know with IBD.

isccyg@gmail.com

Ciara D

The ISCC Youth Group is now up and running and is looking for members to join us. So if you are aged up to 30 (or thereabouts!) we want to hear from you! Our aim is to bring together younger people with IBD so you know you are not alone.

One of the things people miss most is having others that they can talk openly with about their experiences and to learn about different ways of coping with the condition. We have all sorts of plans to change this. So get in touch if you want to be part of it... or please pass this message on to other young people you know with IBD.

isccyg@gmail.com

LegacyUser

I didn't think life could get much worse....Im 24 and have been living with pretty chronic chrohns for nearly 4 years. After recently splitting with my boyfriend and being with one other person I have now discovered that I have genital herpes. I actually cannot believe it. I dont know how bad its going to be or how it will affect me but given my lack of immune system and general luck its going to be awful. I am unbearably depressed and genuinely just feel like my life is over. I had only just begun to feel like I was getting it back on track as for the first time my chrohn's is in remission. I dont know if I can handle this to be honest

Northern Monkey

Hi Folks,

I was diagnosed with Crohns back in January after a couple of years of loose bowels and passing blood. I never really had any of the abdominal pain associated with it apart from an ocassional mild burning sensation in my stomach. Lately (3 times in the last couple of months) I have been getting severe cramps. For those of you getting severe pain, how long should this last? I'm coming up on about 14 hours now (previously they lasted about 6 hours) with the latest flare up and I'm wondering if I should go to the doctor to get checked out, or if this is normal and I just need to put up with it until it calms down again?


Cheers

The_Conductor

Northern Monkey wrote: »

Hi Folks,

I was diagnosed with Crohns back in January after a couple of years of loose bowels and passing blood. I never really had any of the abdominal pain associated with it apart from an ocassional mild burning sensation in my stomach. Lately (3 times in the last couple of months) I have been getting severe cramps. For those of you getting severe pain, how long should this last? I'm coming up on about 14 hours now (previously they lasted about 6 hours) with the latest flare up and I'm wondering if I should go to the doctor to get checked out, or if this is normal and I just need to put up with it until it calms down again?


Cheers

There isn't a standard. You really should be talking to your gastroenterologist- its not a good idea to try to compare symptoms with someone else- what could be normal for one person might be critical for another.

delthedriver

You should make an appointment with your Doctor to get checked out. If this length of pain is unusual to you then there may be a need for further investigation

LucyBliss

It always amazes me how there are people who get a twinge in their little finger and rush to the doctor, and there are people like us who have an actual condition and think 'hmm, I'm in agony for the last fourteen hours. Do I need a doctor?' and then we rationalise it and think we'll wait another while! I have done this myself in the past and I boggle that I put up with the pain for as long as I did.

My advice would be that in this day and age, any pain that lasts longer than a couple of hours when you have a diagnosed medical issue interferes with our quality of life and so should be discussed with a physician. Because you shouldn't have to put up with it. It starts the slippery slope of "I was in pain because I ate that orange or that sandwich, or I ate after 6pm" and you start to seriously limit yourself.

At one point, I was living on two sausages and half a bagel a day which I would eat at 2pm and no earlier or later, in the hopes of not aggravating the pain. So don't be me! Talk to your doctor.

Best of luck!

The Rook

Howdy all,

Diagnosed with Crohn’s back in 1999 and thankfully have lived operation free up until now. I’ve got a probable slice & dice for a colon resection coming up in the next 2 months and to be honest am kind of crapping it (pun intended!) about the potential outcomes of the surgery, specifically the potential need for a temporary colostomy bag.

Can anyone put my mind at ease and tell me (from experience) how it’s going to be?!! The medical & surgical teams I’ve been to see are amazing and have been nothing but reassuring but none of them have been through the operation from a patient’s perspective…. So can anyone here shed any light on it for me?!!

Thanks!

CarrickMcJoe

The Rook wrote: »

Howdy all,

Diagnosed with Crohn’s back in 1999 and thankfully have lived operation free up until now. I’ve got a probable slice & dice for a colon resection coming up in the next 2 months and to be honest am kind of crapping it (pun intended!) about the potential outcomes of the surgery, specifically the potential need for a temporary colostomy bag.

Can anyone put my mind at ease and tell me (from experience) how it’s going to be?!! The medical & surgical teams I’ve been to see are amazing and have been nothing but reassuring but none of them have been through the operation from a patient’s perspective…. So can anyone here shed any light on it for me?!!

Thanks!

Ok, I have had both the slice and dice and colostomy (permanent) operations. Both were quite severe tbh.
You will have to drink a concoction of 5 litres of a salty solution to flush and clean the bowel, (I found that taking it with plenty of ice helped).
After op I woke up in ICU and felt fine at first but then vomited up a large amount of black bile is the only way of describing it. But after that it was fine.
I did have a morphine drip and urine bag attached after op.
Didnt need a colostomy after slice and dice but was forewarned that it may be there when I woke. Still found myself going to the loo very often.
Colitis was still there so I opted for the bag in the end. Far better lifestyle now as I can go anywhere now.
No internet chat in 1994 to find out anything, in fact I thought I was one of a few in the country with it. Got talking to a guy who did have the op a few days before mine though.
But thats it, warts and all, sorry I cant make it sound more pleasant.

Good luck with the operation Rook.

HigginsJ

The Rook wrote: »

Howdy all,

Diagnosed with Crohn’s back in 1999 and thankfully have lived operation free up until now. I’ve got a probable slice & dice for a colon resection coming up in the next 2 months and to be honest am kind of crapping it (pun intended!) about the potential outcomes of the surgery, specifically the potential need for a temporary colostomy bag.

Can anyone put my mind at ease and tell me (from experience) how it’s going to be?!! The medical & surgical teams I’ve been to see are amazing and have been nothing but reassuring but none of them have been through the operation from a patient’s perspective…. So can anyone here shed any light on it for me?!!

Thanks!

I had the resection in the last couple of months. Didn't need the colostomy bag. Op was fine. Hard to move about for the 1st few days in hospital as your attached to drips and tubes.

Had morphine drip and liquid paracetamol bags couple of times a day (along with few other drugs) You wont be allowed eat for few days after the Op until you have a bowel movement. I had Op of a Thursday and it was the Sunday night before the bowel movement and Monday morning before food.

Had a tube inserted to pee which was fine until it started to get loose after a few days!! Also rather painful having it removed.

Pain while your in hospital is very manageable. For the 1st few days when you get home you will be in a bit of pain and probably need help getting up from a lying down position.

Cant think of anything else to say to you. I had very short notice of the OP so didn't have time to worry about it.

Best of luck. You'll be fine. Oh don't worry about getting staples out they are a breeze

LucyBliss

If you do have any pain, tell the nurses and doctors. There are pain management teams that are dedicated to making sure you're comfortable after these kinds of operations so make sure you use them!
At one point, the doctor said that they were going to remove mine after my surgery, which was more of a 'remove and put in bin' as regards my intestine than a slice & dice, but I knew I needed it another while and I told them that and they hummed & hawwed, which made me feel like I was a drug fiend. But I wasn't, I genuinely needed a boost of morphine when I had to move about. I told the stoma nurse and she told me not to mind them and that I should ask the doctor how he'd manage after such a surgery. That put my mind at ease and a few days later, I knew I had recovered sufficiently to start moving about without it.

I found things were so much nicer with morphine. I can see why people get addicted to it. I had a cousin tell me I was never as pleasant as I was with the drip in my arm. B**stard!

Berty

Lucy,

I hope people dont mind me talking about my OH but she doesnt use social media so I use it for her and she doesn't mind.

She has had the temporary ileostomy and had it done in Augut 2010 and as of late is still waiting on a reversal. She is out tonight with her girlfriends and said to me in the car on the way to town

"I feel like such a freak"
"ummmmm why?"
"imagine my friends bump into a bunch of blokes and then pull up my top(can happen) and see this thing"(referring to Tommy Bowe)
"so ****ing what(says me without and issues")
"I'm a freak a ****ING FREAK"

I know what she means. I tell her "so ****ing what, **** those ugly bastards"

Its not that for me though or really for her. She and/or me are waiting for a reversal which is months overdue.

For those of you considering a temporary ileostomy speak to you surgeon about WHEN the reversal can be done as we are waiting 6 months so far which, as far as Im concerned , is bollocks.

My OH.....................

Her name is Christine, she is 31. She is a beautiful girl. We celebrated our 10th year anniversary together yesterday and what did she say "I'm sorry I cant have sex with you". Frankly( I know my username is well known around boards.ie but fvck it) we haven't had sex is 18months+ pluc but I'm not complaining.

I am with her because I love her. I am with her before she had her "issues". I said to her yesterday" I may not be married to you but the vows of marraige still stand- in sickness and in health".

SHe IS in good health but only because she eats like a freakin horse to match the lack of normal absoprtion most people would have intheir small insestine.

Blah blah and blah. I'm not the person, im not involed as such BUT IF YOU ARE A PARTNER OR A CONCERNED PARENT THEN CLICK ON MY USERNAME AND CLICK SEND PRIVATE MESSAGE!!!!

I will answer immediately within normal awake hours!!!

Partners do not have to live separate lives. I assure you!!!

HigginsJ

I agree with you Berty.

It can be very difficult on your OH and impacts on their life alot. My poor girlfriend had to put up wit alot last year but was superb. We barely left the house for a year i was so sick. That cant have been easy.

The_Conductor

Just wondering how other people cope with the constant blood loss? My average haemoglobin level is between 7 and 8 (somewhere north of 14 would be considered normal) but a lot of the time it can be as low as 3 or 4. I'm constantly exhausted- not to mention dizzy, light headed and unable to concentrate (the lack of sleep with a young baby doesn't help either )

I've pretty much been on a regime of getting a blood transfusion every 6 months or so- and have now been put on regime of getting my iron topped up with veinifer too (which is one transfusion a week, for a 4 month period, and then remeasurement).

I feel like a walking disaster (I've also blood clots- most recently on the kidneys, and am on Warfarin too).

How do other people cope? I know the need for blood and iron transfusions aren't necessarily strictly a Crohn's phenomenon, but I do imagine quite a few of us are probably in the same boat.

For good measure- I have to avoid iron rich foods because of the warfarin I'm on (not that I was absorbing any of it anyway........)

HigginsJ

How is everyone.

I took part in my 1st sports activity in over a year and a half last week. It was 11 aside interfirm soccer 30 minutes each way. I played full game in the middle of the park. Was wrecked by the end and very stiff the following 2 days but great to be getting back to normal after the Op and last year.

Northern Monkey

Did anyone read the article in the Irish times today (page 12) about the clinical trials using worms to treat Crohn's?

LucyBliss

HigginsJ, that's great to hear. Well done to you.
Last weekend, I took my Brownies on Pack Holiday. It was a two night stay in our local accommodation centre and bless me, if I didn't catch a cold from one of the kids. I've also been fighting fatigue all week because they did not sleep the first night and I had to give them the "Don't make me angry, you wouldn't like me when I'm angry" speech the second night because all the leaders were wrecked tired and we knew that we'd end up giving out good-o to them if they played puck like they did the first night. Also, the kids were tired too, they just wouldn't admit it!

Still, it was a great weekend and we had a lot of fun, and like HigginsJ, it feels so good to be able to do something like that after years of not being able to. I now have Guide camp to look forward to in a few weeks. I'm going to get myself doped up with plenty of B12 before I go and I expect to spend the guts of a week in bed when I come home. Heh.
I find I get tired more quickly after these kinds of things and sometimes I do have to take time out in bed or at home for a day or two afterwards or I'm just no good to anybody. It used to get me down, you know? Like I was somehow faking the tiredness and nobody else seemed as wrecked as me so why was I giving into it and lying in bed for a day? Was I lazy?
Luckily I reminded myself in time that I was doing the same as 'normal' people - organising camp, getting supplies, pitching tents, teaching the girls activities, striking camp, etc - but I'm doing it with absorption issues, regular B12 injections and no intestine. So I give myself a break because if I don't take it easy afterwards, I'll only make myself sick again and be no good to anyone.

It's amazing the pressure we put on ourselves at times when we know that we're not functioning at full steam, instead of being proud that we're doing what we're doing under what can be difficult circumstances.

That's an interesting article about the clinical trials all right. It can be read here.
There was some talk a few years back about people ingesting worms as a treatment for Crohn's. Good luck to them anyone. It's good to know that we're not forgotten about with all the other ailments that are out there.

Pepe LeFrits

Does anyone know if Dr O'Donoghue's office is open on Saturdays? I need to call regarding my appointment, I guess it'll have to wait until Tuesday

BrianJD

Hi everyone. I'm feeling guilty cause I haven't been on here a while but always followed the thread. I'm just starting another course of prednisolone which I'm dreading. Already the nightsweats have started and I hate the anxiety and mania that comes with them.

Anybody here suffer the same?
How and is it possible to control them, particularly night sweats?

pinkyc

Hi Guys..... its been awhile since i wrote here which im sorry for....
I hope everyone is feeling well and good in themselves =]!
Sadly I'm still very unwell even though I've been on streiods over the last 4 months or so (reducing dose) my bowl movements are much less frequent but i literally have a minute now to get to the toilet otherwise (you no yourself) .......... I'm covered in abcesses (now on a low dose antibiotic for the next 3 or 4 months because of this) also have an eye infection in both eyes one is much worse (was bleeding sunday night and had to go to south doc)
because of all this im feeling very down in myself tbh... sick of it all, thinking back i havent been myself since before last summer! I've been sick with the Crohn's in one way or another since then and its upsetting as I'm 19 but living a life of a 90 year old... i couldnt tell you when last i went on a night out etc.

The last time i wrote it was when i just got out of hospital and that i was told i had ibs and all this was just in my head. Well i came out of hospital on the friday and my mom was in hospital the following monday thats when i noticed the abcesses (obviously i didnt no they were abcesses until i went to the doctor a few weeks later) what I'm trying to say is the doctor said all this was in my head and it was ibs not crohns but yet i was covered in abcesses (still am) and also my eyes now these are side effects of the crohns...which means the doctor turned a blind eye towards me =[


my mom is back with the doctor on friday and insists on me going too... I'm going to tell him like it is and hopefully he'll listen to me and sort me out!!

I'm sorry for blabing on but I'm angry and sad and feel like my doctors arent listening to me!
thanks for taking the time to read this and im sorry for all the blabing
xx

HigginsJ

Stick with it Pinkyc

Try not to get too down. I know thats easy to say and might sound like poppycock but a positive attitude will stand you in good stead. Try get out while you can even if its just for short walks during the day, it will take away the boredom of staring at the same 4 walls!!

Berty

Update on my Fiancee and update on Operations in the Mid West Region

The Theatre in St Johns Hospital will CLOSE during JULY & AUGUST and will only perform emergency operations when required.

Therefore the backlog in the Regional will soar.

Anywho, my Fiancee was called yesterday to have her Stoma Reversal performed. She will be attending the Regional in Limerick next Tuesday and will have the operation the next day.

She is excited, frigthened, anxious and relieved all at the same time. She had her bowel resection back in August 2010 and is only now getting her reversal.

Fingers and bowels crossed folks.

Pet

Grr. In the middle of a big flare-up at the moment, but luckily I've a consultation in about a week. Managed to make it 4 months med-free without a problem (by eating like a MONK, not touching a drop of alcohol, getting plenty of rest, daily yoga, avoiding stress and basically wrapping myself in cotton wool), but I'm back to being bed-ridden after letting things slide. I guess if I can do it once, I can do it again, though!

LucyBliss

pinkyc, how did you get on at the doctors? I'm assuming it was last Friday you had the appointment but I could be wrong.

It is very difficult to keep going when you're not feeling so well and can't do what you used to or do what other people your age are doing. I had nearly three years of practically hibernating at home so I well understand. HigginsJ is right, a positive attitude can help a lot; if nothing else, it means that when you feel better and rejoin life (and you will!) the disease hasn't made you bitter or unable to enjoy being out in the world. Very important that. I used to keep a close supply of my favourite films/TV shows/books for when things got really tough and I needed to keep myself going.
I also kept pen & paper journals. Yeah, those will either have to be buried with me or burnt upon my death because they are filled with rancour and swear words and are quite uncomplimentary to people who pissed me off when I wasn't feeling so great. But at least I got the venom out and felt better without alienating half my friends and family!

Pet, good luck at your consultation.

And best of luck to Beer Baron's fiancée. Fingers crossed all goes well for her!

Berty

LucyBliss wrote: »

And best of luck to Beer Baron's fiancée. Fingers crossed all goes well for her!

Thank you, she says from across the room. Enjoying our last night together under this roof for around a month.

Last year it was 2.5 months before she could come home. Dirty infections from dirty hospitals. :mad:

pinkyc

pinkyc wrote: »

Hi Guys..... its been awhile since i wrote here which im sorry for....
I hope everyone is feeling well and good in themselves =]!
Sadly I'm still very unwell even though I've been on streiods over the last 4 months or so (reducing dose) my bowl movements are much less frequent but i literally have a minute now to get to the toilet otherwise (you no yourself) .......... I'm covered in abcesses (now on a low dose antibiotic for the next 3 or 4 months because of this) also have an eye infection in both eyes one is much worse (was bleeding sunday night and had to go to south doc)
because of all this im feeling very down in myself tbh... sick of it all, thinking back i havent been myself since before last summer! I've been sick with the Crohn's in one way or another since then and its upsetting as I'm 19 but living a life of a 90 year old... i couldnt tell you when last i went on a night out etc.

The last time i wrote it was when i just got out of hospital and that i was told i had ibs and all this was just in my head. Well i came out of hospital on the friday and my mom was in hospital the following monday thats when i noticed the abcesses (obviously i didnt no they were abcesses until i went to the doctor a few weeks later) what I'm trying to say is the doctor said all this was in my head and it was ibs not crohns but yet i was covered in abcesses (still am) and also my eyes now these are side effects of the crohns...which means the doctor turned a blind eye towards me =[


my mom is back with the doctor on friday and insists on me going too... I'm going to tell him like it is and hopefully he'll listen to me and sort me out!!

I'm sorry for blabing on but I'm angry and sad and feel like my doctors arent listening to me!
thanks for taking the time to read this and im sorry for all the blabing
xx

Just curious...what sort of abscesses did you have (if I'm allowed to ask) and how old were you when you were diagnosed with Crohn's? I'm sorry your doctors aren't listening.....I think it's a common problem for everyone with a long term or less 'visible' illness. It's very frustrating. I wish you the best of luck!