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Original poster

stuck in hospital again with Crohn's

22 replies

Anaffaquine · 29/10/2015 07:20

I'm back in hospital because of a flare up and feeling rubbish. I was admitted in February, stayed 3 weeks and diagnosed as having Crohn's then.
My results from an MRI in April got lost. They are just dealing with things now that should have been sorted back then.
They think I am constipated as it looks from an X-ray as if there is lots of poo stuck in my bowel.
However, I was admitted because of having bloody, uncontrollable diarrhoea upto 12 times a day, often at night too.
I've just been given an enema and two sorts of laxatives- one to soften, one to help me go. I now feel all hot and bothered but apart from wind have no desire to poo.
I'm getting a colonoscopy today to see what's what.
They have already told me I have significant damage to my terminal ileum as well as Crohn's present in both small and large intestine.
Every time a doctor speaks to me it seems another bit is going wrong.
I'm worrying about it all. And my little girls at home. They are 4 & 1. And about when I will get back to work.
Anyone with any advice would be gratefully appreciated

OP posts:
ethelb · 29/10/2015 08:04

Sorry to hear you are feeling rubbish. Crohns and collitis runs in the family and the first year after diagnosis is tough. Then once they have sorted the right meds things start to get better. I promise.

gingeroots · 29/10/2015 08:40

Oh you poor thing .I know you want advice and I don't have any but it really does sound tough .

Good luck today Flowers Flowers Flowers

Hope lots of people come along with more encouraging advice like ethelb

gingeroots · 29/10/2015 15:06

Keep thinking of you with your enema ,colonoscopy and little ones at home .
Do hope you're doing better .

You will feel better than this ,just keep going and you'll get there . x

knackered69 · 29/10/2015 21:38

How was the colonoscopy? Hope you are feeling a little better x

MrsPinotGrigio · 29/10/2015 22:06

Ana I'm sorry to hear this, was hoping you were ok after your flare in Feb. I had an obstruction in Jan but still had diarrhoea - consultant said its constipation overflow but the fact that my bowel was still moving something was a good sign. Hope the colonoscopy gives you a better idea of what's going on in there. Take care, I'll keep popping into this thread over the next few days to see how you're doing Flowers

cowssheephens · 29/10/2015 22:11

How did your colonoscopy go today? Hope you are feeling a bit better tonight Flowers

Have your DD been able to visit?

My young DD has Crohn's, diagnosed as a baby. Sad

Original poster
Anaffaquine · 30/10/2015 08:57

MrsP, I appear to have a similar blockage with diarrhoea getting past too. They are happy that lots of inflammation has gone. Just the really badly scarred bits left.
The IV steroids have worked like magic.
Dd1's childminder took both girls into me on Wednesday afternoon. I am really lucky to have found her and that she had a space for dd1. Lots of people, locally, are quite jealous as she is fab.
I didn't want them in yesterday as I wasn't sure how I'd be after the colonoscopy.
My friend, who works at the school where the schoolboy was stabbed to death, came up yesterday. She needed a distraction but all our other friends were working. I hope she is ok today. Sad
I am pretty sure I will move back to oral steroids along with azathioprine and get out today.

OP posts:
Original poster
Anaffaquine · 30/10/2015 15:52

Asked to take my stuff to the day room and wait to be discharged at 11:30. All well and good except they still wanted a stool sample. I also then had to leave all my bags in the unsecured room next to the exit whilst I did the necessary.
I am so bored. There is no TV or anything. Hurry up drugs and letter, I want to go home!

OP posts:
TheVeryThing · 30/10/2015 16:06

I really hope you're on your way home now, Anaffaquine, sorry you've had such a horrible time Flowers

MrsPinotGrigio · 30/10/2015 19:37

Good news that the inflammation has gone, not so good about the scarring. Have they indicated what the next step is? Hope you got your drugs quickly & are back at home with your little ones x

Original poster
Anaffaquine · 30/10/2015 20:16

They are hoping that now the inflammation has stopped that the scarring may heal.
I will be back in a month and they will check.
The scarring has caused the blockage too. They will check it has gone too.
If there is still issues it may well be surgery that is needed. I am remaining positive and hoping that it will now start getting better.
They are waiting to see how I am on Azathioprine too but are talking about moving onto a biological infusion. I think it is Inflixomab?
It is a case of giving everything some more time and seeing how I get on.
The important thing is I am home to my girls and DH. Both girls just wanted bosies and kisses. I think they are pleased I am back!
Dh wanted a lie down in a darkened room. He has found it tough!
I've now got a week's worth of Australian Masterchef to catch up. I couldn't get that channel in hospital!

OP posts:
MrsPinotGrigio · 30/10/2015 20:24

Infliximab can heal strictures but in my case it was too little, too late & the narrowing was so bad my only option was surgery. I hope you get good news when you see your doctors next month. In the meantime enjoy your hugs & kisses with your girls & all the lovely food on Masterchef. Take care xx

Original poster
Anaffaquine · 02/11/2015 10:07

I had a good weekend although quite sore and tired. I am going to the loo and although it isn't diarrhoea it isn't a proper fully formed movement either. In lots of pain but I suppose that is to be expected if there is a blockage needing shifter and after the scope on Thursday.
My girls are just happy to have me back. Both are being quite clingy and only mummy will do. Putting them to nursery this morning was a challenge as they just didn't want to leave me. I'm sure they will be fine now I'm away though.
I have spoken to my gp and have a line, signing me off for a couple of weeks but I feel guilty as I'm sure I could work. Dh thinks I should take time to recover though. That isn't my style usually!ConfusedWink
I feel a hypochondriac because I suppose I'm so used to having aches and pains and a dodgy stomach. I just get on with it.
Not sure why, presume it is the medication, I'm feeling quite nauseous today too. I'm taking so many pills now it is ridiculous.
I'm going back to bed for a while though. See if I feel ok then.

OP posts:
Original poster
Anaffaquine · 02/11/2015 19:58

Another call from my GP to say my potassium levels are quite low. I don't know what that means except I had to pick up another prescription.
I've ended up emptying a cupboard in the kitchen that was full of booze and glasses. I've made this my pills store. I have so much now I need a whole cupboard.
Chose this one as I now can't drink because it just makes the Crohn's worse. Dh isn't much of a drinker anyway. He will drink when out but prefers a glass of milk at home. GrinWe are soooo Rock and Roll!
Booze banished to cupboard under the stairs, glasses, mostly, in boxes in the garage. I've put 4 in with the cups we use for having juice.
It is quite depressing. I'm not a big drinker nowadays, luckily I cannot fully remember my drunken youth but it feels like I have so little control now.

OP posts:
gingeroots · 02/11/2015 20:26

Oh sounds crp Anaffaquine* .

You'll need to treat yourself with some on line retail therapy - it's compulsary for people in your position Wink

Scarydinosaurs · 02/11/2015 20:31

So glad you're home and hope this flare ends soon. I have UC so really do understand how awful it can be- I hope you're feeling better really soon.

MrsPinotGrigio · 03/11/2015 19:02

Glad you had a good weekend. Take the time off to rest & recover - I'm always surprised how much a flare up can take out of me & I never ate properly while constipated/blocked as I just felt 'full' all the time. Take care & look after yourself Flowers

Anaffaquine1 · 12/11/2015 21:51

Mn didn't like my name so I've added a 1 on the end?!?Hmm
Still getting so much pain. So much that I can't sleep at night. I can't get an appointment with my gp until Monday but at points I am doubled over in pain.
The colonoscopy showed no inflammation at the end of my colon but there is still fresh red blood in my stool and in the toilet pot. What could that be from? Does this mean I am not in a flare? Is the pain just from being constipated? I have so many questions buzzing round my head.
The diarrhoea has stopped and the stools are fully formed now. They are really dark though so I am worried that that is old blood.
However, I am on iron tablet because I was a bit anaemic and when I was pregnant iron tablets made my poo black and tarry!
I am so fed up examing anything I produce.
I also have not heard about a follow-up appointment at the clinic. They said a month which would be the 23rd of November. I think I will phone my IBD nurse tomorrow and ask lots of question!

wannabestressfree · 12/11/2015 22:01

You always have to push for help....
I am another chrones, short bowel patient. Have a permanent bag and on 20+ ops..was on azathripine and didn't' work but am now under st marks in London and hopefully starting infliximab. Apparently its on good if crohns has flared though....
Am currently on 25+ immodium , 40mg steroids and codeine cocktail daily so I can work and function. Have three boys .....
Rest up

Anaffaquine1 · 12/11/2015 22:09

Thanks, I am notoriously crap at asking for help about anything. I even felt bad asking for a Dr line the day after being released from hospital. I mean, I am not dying, but I'm not right. Not at all.
I will contact the IBD nurse in the morning. She is really good and helpful. I really don't want to wait until Monday for stronger painkillers. Although I am aware they could add to the constipation. I need something though. Rationing paracetamol and counting down the hours until I can take more is no fun for anyone.

wannabestressfree · 13/11/2015 05:22

I am the same don't worry. Let us know how it goes.....

MrsPinotGrigio · 15/11/2015 22:03

Fresh red blood can mean piles or a fissure. Iron tablets are notorious for causing constipation - my GI won't let me have them at all as the last lot I had triggered a massive flare. Ask your IBD nurse about iron infusions rather than tablets - take a little longer to work but no nasty bowel problems. Please let us know how you get on Flowers

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