crohns disease..............advice please

[wannabestressfree]

I have had severe crohns for several years. Three bowel resections, gall bladder removed and am on lots of different tablets. Immune supressants etc. My consultant is at St Thomas' as its so bad. I missed my last appointment as my son has been ill and I know I have been a bit lax.

The thing is I feel so poorly but don't want to go into a London hospital. Do I go to A&E locally? I need some advice from those with similar problems. I feel like I need a good work up and and my GP won't even examine me. [I went twice last week] I am going to see the nurse this morning for my bloods.

I am having palpatations, trouble weeing, my abdomen is swollen, acid reflux, joint pain [I am on high steriods], fluctuating temperature, pus and blood coming out of my bottom and mouth [ regardless of anti vomiting meds], eye pain...............I could go on. I know these may sound severe but crohns isn't pleasant. I am just not sure what to do..........

I just don't want to go back into Tommy's. I feel very isolated there and the kids are so far away. The last time I was in was Easter last year and the x only came once with them in a month. They thought I might have short bowel syndrome too then and I was due to have more tests but I can't relax when I am in there and focus on getting well. Work, the kids and life gets in the way.

Sorry if this is a bit rambled............

shameless bump........

No reason at all why you can't go to your local hospital, ideally it would be easier for your doctors /for continuity of care to go where your consultant is, but if you are acutely unwell at the moment, then yes, go to your A and E.

And when you feel better, put in a complaint about your GP - he/she should be admitting you with a referral letter so you can bypass A and E can go straight to a ward really.

Thanks Minnie. I am going to speak to the nurse at the surgery then make a decision. I am in hospital a lot but I know when I am ill. When I saw the doctor last week she said it was just stress due to DS being in hospital but he has been in since september {psychiatric} and I just 'know' its more than stress.

The problem is I moved here in August and the doctors still don't have my notes. The only thing the doctor said was that my steriods are as high as they feel comfortable with [40 mg a day] so they didn't want to raise them.

If you have pus and fever then you may have some infection at the moment, which the steroids could be masking a bit. You need investigating properly.

Does your local hospital have a decent gastro DR, are you usually under surgeons or medicine?

I normally get taken in under the surgeons, they poke about about then the gastros wander down after few days. I am not sure whether the my local hospital has a good gastro section as I have never been in there. I think you might be right though. Am just off to the quacks will let you know what she suggests. They are doing my liver function etc as I am on azathioprine{sorry for spelling]

Yes, once they decide they are not going to cut you up they like to hand them over to medicine. Surgeons are a breed of their own

Am in hospital. No perforation but have severe infection and a fistiula. am having antibiotics and yet more steroids...... Oh and there is a strong possibility I may be diabetic. I hate this disease.

No advise for you but just wanted to say,after having 2 spells in hospital in the last 3 months,I know how you feel
It made me feel guilty for not being with my kids but you know the reality is that they need their mother well.
You are in need of urgent medical attention and thats what you are getting.There is no way round it ,unfortunately.The first time I was in was a london hospital and although I had planned for it ,like you I felt very far removed from my family.The second time was an emergancy admission so no time to plan,but in local hospital and I did feel more relaxed knowing I was nearer.
Which hospital are you in?hope you are feeling a bit better now and they are looking after you well.

I am glad you got admitted, it sounded necessary The steroids can cause raised blood sugar levels which may or may not be temporary. Fistula sounds horrible though, hope you are feeling better soon.

Am out, had massive dose of antibiotics but had incident with my heart whilst I was in. It stopped basically. They phoned my DP and he spent he night in the hospital with me. As a result he has been very teary since I came out and doesn't want to leave me alone. They think it was some kind of seizure. It has really frightened me. I have also been diagnosed with LOW not high blood sugar and have to test my blood and then raise it with food. Unfortunately the GI foods I would eat give me terrible runs.

I completely understand the children angle. As soon as I feel anyway better I want to leave as I feel I am being a bad mum. I am exhausted but that's crohns isn't it? They are tapering my steriods but I feel fat, tired, grumpy, unable to function properly, a liability to my family etc. I cry on the loo [which is my spiritual home], don't feel I can walk anywhere in case I need the loo and it seeps out then burns my back, legs etc. I am 33 and it feels like a life sentence. I begged for a bag but they think I have short bowel so its pointless.

Sorry really needed to moan...........

wannabe I know very little about Crohns so can't be helpful, but reading your posts it sounds horrible - you moan away if it helps :(

I hope they manage to get your medications and blood sugar sorted and that you feel a bit better soon :)

Just going to bed but saw this,I wondered what happened to you! That is very scary and you're not better yet so no wonder you are feeling a bit freaked out.Take it easy and be kind to yourself.
Will check on you tomorrow.

Thanks it helps to chat on here. I feel like I can't do it in RL. Everyone thinks I am a rock and just get on.......... rock is crumbling a bit

Hi Wannabe, I'm sorry to hear you're going through all this, it sounds awful. I posted on your DS's thread previously (hope he is doing ok by the way....I posted enquiring about him the other day but didn't realise you had all this going as well).
Sounds trite as things sound v unpleasant ATM, but I hope you start feeling a bit better soon. X

Thanks selks have updated that........ I sound like a real mood hoover!! I am getting better am awfully stubborn and impatient though lol x

I feel really lonely at the moment though. Silly really. Am going to see DS tomorrow. First time in a while as been in hospital. They told him I was there to help support him in case I needed surgery. He wouldn't speak to me though. Felt like really let him down.

You're not a mood Hoover! You're an amazing woman coping as you do with all that is on your plate at the moment.

And no way have you let him down... You can't help being ill!

DP doesn't want me to go tomorrow as I am poorly but I have to. I just want to see him. Thanks selks x

You poor thing ((hug)). If they won't consider you for a colostomy would the ACE procedure be a possibility - where they use part of your appendix to create an opening to which you can attach a catheter and flush out your system usually every other day? My DD (2) was born with anorectal malformation and had a colostomy for 18 months and it was amazing - much easier to handle that I had ever imagined. If they only 'think' your bowel is short can they investigate further??

Hope you feel better once the infection clears up xx

Wanna, my lovely dad suffered crohns for the last 15 years of his life (developed late on) and I know what an evil disease it is.

Just wanted you to know that I think you are amazing. You are letting no-one down.

I really hope your meds help to keep this evil condition under control and that you can get on with your life.

Am sending you a huge virtual hug and to hell with what the anti-hug brigade thinks of that.

Thank you all. I don't have an appendix, was removed before they diagnosed crohns but will read up on what you said.
Hugs are appreciated. Dp has come downstairs to sit with me. He really is a star and I am horribly independent so don't make life easy for him to care for me. We don't live together but I promised to stay until I felt less wobbly x
I had a camera test but the 'short' is due to numerous ops and nicks to the bowel. The local hospital has requested my notes from Tommys and the local consultant is very nice although I get the impression when she rolled her eyes she thinks I don't take enough care of myself.

My brother suffered terribly with Crohns Disease, He was diagnosed at 14.
He was on so many pills It was unreal, The steroids he was taking made his cheeks swell and he felt a lot of pain. It was very sad to see him suffer. He hated going for bariums and endoscopy and all of this made him very depressed.

I know I'll get flamed for this but one thing that definitely helped him with his symptoms was cannabis. He did smoke it, but he also ate it too. It helped with his gut aches, bowel problems and the general awful feeling of meds and misery. Here is a link showing a study of Crohns and cannabis and the surprising results.

Viva, can't see why you'd be flamed for sharing something which helps! I have a friend with Crohns who also uses Cannabis. Seems to make quite a difference for him too.