Saying hello...

Hello all,
My name is Ria and I have very recently been diagnosed with Cronhns.
I didn’t realise anything was wrong until I was sent to A/E with a suspected angry appendix in mid June of this year. A CT later and I had two consultants telling me that I had a perforation in my small bowel with thickening of the walls of the surrounding bowel that indicated Cronhns. My Gastro consultant and the general surgeon both advocated surgery as my best option. Two weeks later I had the op, 15cm of ileum and my cecum removed. I woke in a huge amount of pain and confusion; my body did not react well to morphine. I have never felt so terrible and I am worried that one day I’ll have to go through the whole process again.
Everything has happened so quickly for me, it’s difficult to take it all in. I am feeling much better now although it has been a long road that at some points I didn’t think I could manage. I return to work in a little over two weeks and this also frightens me, since having my op I have been suffering with diarrhoea which can be urgent to say the least! How am I going to deal with this at work? There are times when I just won’t be able to use the loo.
I’m not feeling sorry for myself and I am very aware that things could be much much worse! I just thought it might be nice to talk to other people who have the same problems as me. My family and friends have been great but sometime I get the feeling that they just don’t quite get it.
Would be lovely to hear from you if you have the time.

Hey Ria!

Sorry all of this has happened to you. Crohn's sucks. Join the club.

You've come to the right place. We'll be here for you throughout your journey.

Hi Ria and :welcome:

Good to see you here. Roo has had the same op as you but with more bowel removed and subsequently she has been left with Short Bowel Syndrome. Perhaps your diarrhoea will settle over the next few weeks or months, in the meantime you could try Questran which is designed to absorb the water and bile salts that are causing the loose watery stools. I know it would work for Roo because she has tried it but finds it unpalatable so has chosen to plan her eating around her day. Roo is young though and given time she may revisit it.

There are many people here that understand what are going through Ria and know the feelings you have. This is a friendly and safe place for information and support. No one knows what course their Crohns will take but there are many ways to try and optimise your outcomes and maintain remission including diet, medication, alternate therapies and so on and like the disease itself everyone's response will be different. Are you taking any medication?

Another operation has always been my biggest fear for Roo since her first was at such a young age but the GI has repeatedly said there is no reason this may very well be her only operation and with appropriate treatments he is confident that she will get through uni, having a family (if she so chooses) and beyond before anything major may occur. Will this be the case? (((shrug))), so we take each day as it comes and 4 years on so far so good. Fingers and toes crossed,

I hope you stick around. Welcome aboard!

Take care,
Dusty

awww thanks for saying hi and for your positive words.
I'm lucky to have got to 30 years of age and for this to have been my first Op so maybe it'll be okay.
It makes me so happy to hear you talk about Roo having a normal life, and having children. I managed uni but I have not had children yet so I just hope my body will hold out and let me have them before it gives up!

I'm not on medication yet, they tell me that the removed all of the affected bowel so for now at least I don't need any intervention. I have to let them have a look up there in 6months for a check...which i'm not looking forward too but after having the op letting them put a camara up my bum seems not so bad haha
I'm gonna have a look for that stuff you mentioned for the diarrhoea, thanks so much for that, maybe I can slow it all down before I have to go to work.

How does short bowel syndrome affect Roo?
I read that Roo and I will have problems absorbing fats and B12, how does Roo deal with the vit absorbtion problems? Wondering what I have to look forward too!

Ria x

How does short bowel syndrome affect Roo?
I read that Roo and I will have problems absorbing fats and B12, how does Roo deal with the vit absorbtion problems? Wondering what I have to look forward too!

Click to expand...

She has about an average of six loose bowel motions a day, bear in mind though that Roo had 59cm of bowel removed.

Roo has B12 injections every 3 months and takes a Folic Acid tablet 3 times a week. Also she takes Imuran, which is an immunosuppressant, daily. Have the docs not suggested taking something like this to maintain remission for you?

She has bloods done monthly now but only because she changed GI's due to moving but prior to that she had moved to 3 monthly. They test because of the Imuran but also check her inflammatory markers - CRP & ESR - and keep an eye on her B12, Folate and Iron Stores levels.

Dusty.

Hi Ria, welcome!! You're in good hands here with Dusty so I can't add anything. I just want to wish you the best.

Hiya Ria, Dont worry about going back to work, I was the same when I went back after my op, and for the same reasons. You will find a way of dealing with it, and its always worth asking about loperamide (brand name-Immodium!!) when you see your doctor/consultant. It was the first thing my Gastro said I could have. I basically self medicate with it, I know when I need to take more, and some days I dont bother with it. If Im going on car journeys or meetings etc I up the dose before it, and (touch wood) it's worked so far.
I have B12 injections every 3 months, and will do forever now I believe. I also have to have high Vit D injections periodically and take Vit D supplements daily. That said, Im waiting for the lovely NHS to precribe me a couple of weeks in the sun every few months for more Vit D absorption....hahaha!!

Hi Ria
and welcome

Dusty has given you great advice, I can't add any more, only to say, we're here for you, you're not alone with this, anytime you need to vent, scream away!
glad you found us, lots of support here
lotsa luv
Joan xxx

Your all so nice, thanks for everyones replys, it's been really nice hearing from people that actually know whats what about this whole poo issue!! and everything in general too.

Dustykat, I'm not seeing my Gastro guy until december, but neither of my docs has mentioned any medication. Not heard of Imuran but I'll look it up. The only thing they talked about was B12. As I'm looking into it all more and more tho I've found that there is quite a lot that go's on in the part of the bowel I don't have any more which is a bit of a worry.

I started taking cod liver oil when I read about the problems with fat absorbing and have been looking into the folic acid so will def pick some of that up asap.
I do think that 3 weeks a year on the NHS some place sunny would be more fun, but taking vit D will have to do x

Welcome
I think december is a long time to wait to see your gastro again. I would think that they would suggest possible maintenance meds to keep the crohns in remission. For a high percentage of patients who have surgery, the crohns tends to come back and affect the same area as before. I also have to get B12 shots and iron infusions and take a wide variety of vitamins.

Hi Ria, welcome. Sorry you have crohn's, but it is fortunate for you that you were diagnosed so quickly. Some of us wait a long time for a diagnosis (myself included - I've been ill for nearly a year and I'm still undiagnosed).

In addition to what everyone else has suggested, I'd like to add that you should ask your doc about prescription anti-diarrhea meds if things like immodium don't work for you. I tried immodium but it never worked for me, I continued having lots of d even after taking it. I ended up getting a prescription for Lomotil, which works really well for me - it kicks in after about 20 minutes, and usually one pill is enough to stop my d for the majority of the day. (Keep in mind that what works for some of us may not work for others, so don't get discouraged if you try some of the suggestions and they don't work as well as you hoped.) Good luck!

I don't understand why some people don't get diagnosed and some like me do? They seemed to be some sure after my scan that that was my problem even with not a huge amount of symptoms. If they can see my crohns on a CT why can't they do that for everyone!! Its not fair.

When I go and see the surgeon in sep i'll ask about the gastro, he seems good so I'm hoping he'll sort me out. I think I need to good see my GP now tho, I'm pretty sure I'm becoming anemic, I have fits od tiredness, which is not so unusual, but yesterday I knocked my knee on a table and now I have a BIG bruse to show for it along with a lot of little ones on my legs from I don't know what. Not sure if I'm being over worried but a lot of you guys seem to need iron so maybe I do too.....

Immodium works most of the time, but does anyone know if you can just keep taking it indefinatly? I guess we don't have much choice.

x

Hi Ria, welcome :bigwave: ... taking imodium often is not a good idea, there are two things, one is eat unsweetened apple sauce, bananas and probiotics help too. If they are not enough you can as your doctor for Questran (cholestyramine) it helps stop the bile acids and slow yours diahreah. Just some help, hope you feel bettter soon!

Hey Ria,

I think it's a good idea to see your GP too. It won't hurt to have your bloods done and that way you're not left guessing. Make sure to ask for for Folate, B12 and Iron Stores to be done along with the regular bloods. Good luck!

Take care,
Dusty

Hi Ria, I'm really sorry to hear about whats happened to you. I've had crohns for 5 years now but I havent had any surgery. My brother also suffers with crohns and the way he was diagnosed is a ver similar story to yours. He was taken into hospital with his apendix which he had removed and also found out he had crohns too, he has also the infected area removed surgically and now he is in remission. I hope your coping ok sometimes it's all a bit overwhelming take care hayley x

Going to the GP in a min, armed with questions and requests! I talked to Occy health at work today and they don't want me back until I've seen my surgeon!! To be fair I've been very tired the last week of so, may be its a good thing to put it off a but longer.

Thanks Hayley, How long has your brother been in remission? I'm doing okay I think, sometimes I feel totally normal like nothings happened! Although I went out window shopping with a friend for the first time yesterday and needed to loo fast! I'm glad the shop I was in had a loo!! That sort of thing really reminds you that your not like you used to be. Could be worse mind you x

Hey Ria,
Just wanted to say welcome! You will find so much info here and I am sure it will help you a great deal. I had surgery back in 2000 very similar to yours. I also have B12 jabs every 3 months and take cod liver oil plus all my meds. But it is def worth checking with your Gp about B12.

Try not to worry yourself too much about work, you need to think of yourself. I am hoping your work are very understanding and this will make it easier for you. I often take immodium on days where I know I can't handle trips to the loo every 10 mins!!!!
Good luck at the docs
Jo xx

Can anyone tell me how they managed at work after their op?

I've called work and my manager said that they are running on low staffing and that I shouldnt go back unless i'm fit....I am meant to be going back on a structured return but in real life I know that won't be respected and i'll end up doing too much.
I see my surgeon on monday, the GP is not happy for me to go back until he has said its okay.
I don't want to be seen as trying to get more time off but I am worried I won't have the energy to cope, my job is high-stress and I am on my feet all day....

Hiya Ria

on a 'proper' phased return to work, they have to make 'reasonable adjustments' so no, you will not do above and beyond what is required of you. If this happens, then they're breaking Employment Law in accordance with the Disability Discrimination Act.
You are well within your rights to say 'no, I can't do this yet because......'
be a good idea to see your union rep, occupational health and HR
all these will give you backing if they threaten you with dismissal
Employers have a duty of care, if they don't adhere to this, they're breaking the law, huge ball ache for them if you sue!
Be assertive, be insistent, this is your health, and it comes first!
Joan xxx

Thanks so much Astra, Its nice to know I have backing, I have a meeting with occy health on tues so i'll see what they have to say!

Hiya Ria

I was off for 5 months this year, and one day I got a letter from my employer to say I had to attend a meeting with Occy Hlth with a consultant cos of time off etc.
I was distraught and extremely miffed, but it turned out to be a God send. The consultant was on my side, he had a 3 page list of 'reasonable adjustments' typed up to send to my Employer, and one of them was to send me home if I look tired- ha ha ha ha Er, like every day?
My advice? Tell Occy Hlth everything, all your history, symptoms, keep a journal, write answers and questions down, document everything. They're batting on your side.
good luck
xxxxx

hahhaa Oh I wish I had a letter like that!! I'm back at work now, 4hrs for now working up to 5, its okay, but I am very tired by the end of the day! Hope that gets better x

How did you end up going with the D?