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Crohns Disease and Colitis

(82 Posts)
paffuto Mon 03-Jun-19 23:52:02

Any fellow sufferers? I have Colitis along with other illnesses and a lady on another thread has Crohns and is really suffering by the sounds of it. I decided to start this thread and hopefully she will find it. It would be great if other sufferers could join us and compare meds, symptoms, etc.

paffuto Tue 04-Jun-19 11:59:19

Anyone fancy making this an "air your grievances" thread? At this moment I am sitting on the edge of my bed opposite the loo with the familiar painful bubbling stomach warning me I need to get in there fast. Can't because daughter (adult) is in there so I'm feeling angry and resentful. Can't help it, selfish I know, but I always feel that the family loo should be available for me at all times days and night.

paffuto Tue 04-Jun-19 12:03:28

Just knocked and asked her to hurry. The family must be fed up of me rushing them every time they're in so now I feel guilty. If we ever win the lottery the only thing I need is my own toilet!!! blush

paffuto Tue 04-Jun-19 13:20:44

I also feel jealous that other women get to spend time looking in the mirror faffing with hair and make up when all my time is spent sorting myself out in the loo.

DecomposingComposers Tue 04-Jun-19 14:39:21

Thanks for starting this paffuto

It is a god awful disease that very few people understand. Having had it for 20 years now I fear this is where my health is about to take a massive down turn.

Until recently it has been manageable with medication and restricted diets. Then a few years ago I developed severe inflammatory arthritis linked to Crohn's so that gave a new level of issues to cope with.

Several months ago I collapsed at work with what turned out to be a significant GI bleed and whilst in hospital for treatment of that they discovered that I am developing heart failure though they don't yet know why.

I need to get back to work though I really don't know how likely that will be. I am still unable to eat properly so rely on liquid meals and spend almost all day lying down because I am just too tired or breathless to do much else.

On top of all that during an abdo and pelvis CT they've found an ovarian mass which also needs investigating so things are going great here!

paffuto Tue 04-Jun-19 14:45:46

Scuse my ignorance but what is a GI bleed? I admire you for working, I haven't worked for years. Firstly with prolapsed disc, arthritis and other things but now with the colitis I really don't know how you've done it.

paffuto Tue 04-Jun-19 14:55:40

Most of the time I feel as though I'm just existing rather than living. I also have autoimmune hepatitis, diabetes and constant water infections. Hospital not happy that I have come off the azathioprine (making me worse) Have just spent 6 months in bed watching TV, think I just gave up trying to go out but I'm trying to get up more now and I'm going to make a big effort to go out once a week even if just for coffee (well decaff tea, can't drink coffee)

paffuto Tue 04-Jun-19 15:03:12

I hate myself feeling jealous of other people. At the moment jealous of other mums who can go out with their adult daughters. I did manage it last week and felt so ill but managed to put a brave face on for daughter's sake. Husband is great though, every time I apologise for having a moan he says if he had all the things I had he would me moaning from morning till night. Bless. smile

DecomposingComposers Tue 04-Jun-19 15:16:28

GI bleed is a gastro intestinal bleed. Basically a haemorrhage into the bowel.

I have had no choice up until now but to work.

Had back op a few years ago that went wrong and caused an injury to a nerve root in my spine so now have a device implanted into my spine to control that pain. Changed my job at that point because I was no longer able to do it but my new job is causing major flares in my pain levels.

Plus I am restricted in being able to access the toilet whenever I want. Until recently I managed by just not eating but even that isn't working now so no idea what the future holds.

And yes, I get you. The isolation is awful. People have no idea. Friends drop away because you aren't able to go out. I can't do anything without my husband coming with me yet he's having to work 6 days a week to support us and our dd at uni. He has to do absolutely everything at home as well. He has no life either.

I'm so tired of fighting this and of fighting to hang onto a normal life. The thought of living like this until old age horrifies me.

I keep hoping that I will turn a corner but in reality all that seems to happen is that something else develops. This past year has just been a cascade really and I truly fear what comes next.

I get so fed up of people telling me that I should fight for better treatment at work and that they have to accommodate me because the truth is they won't. Same as having access to certain things when out and about - provision for people with disabilities is awful and the reality is that it stops people from participating in life. But when you are ill you aren't in the best position to fight.

paffuto Tue 04-Jun-19 15:31:06

That must have been what I had last year. I had black faeces then months of diarrhoea, lost 4 stone. They seemed unable to tell me what caused it. I only found out I had been diagnosed with colitis when I spotted it in a physio report of all things. I do hope things get better for you (for both of us) and others join this thread so we can all support each other. I know what you mean about husbands /partners. They have no life either.

DecomposingComposers Tue 04-Jun-19 15:39:27

Yeah, it depends what part of the bowel is bleeding and how quickly.

Black stools tend to be a sign of haemorrhage in the small bowel because the blood has taken longer to go through the gut and is partially digested, hence the black colour.

I was bleeding from the small bowel but the blood loss was so heavy and so quick that it just poured out. I was at work at the time. I had been unwell for a few days but then sitting at work I felt very unwell, got up and passed out. Then I started passing the blood.

Having 3rd colonoscopy in 2 months this week and hopefully it shows things are settling down. If so, I'm going to try going back to work next week on a phased return until I finish all the heart investigations.

So, fingers crossed.

paffuto Tue 04-Jun-19 15:43:56

Have to go for now, will come back later flowers

fotheringhay Tue 04-Jun-19 15:49:33

God awful disease is right.

I'm very lucky that I found an exclusion diet that fixed me (essentially paleo but was called something else when I started in 2005). I don't know if it would work for everyone.

When I think back it's like recalling a nightmare. I feel so bad for anyone suffering flowers

DecomposingComposers Tue 04-Jun-19 15:59:27

I've tried a few different diets over the years. Once it's back in remission the diet tends to work and the best one for me was a no carb, combined with the FODMAP diet.

I don't know how useful it would be for anyone else. I seem to have an issue with milk and gluten but also carbohydrates. I also have a stricture in my bowel so I need food with low bulk.

Wrigleys123 Tue 04-Jun-19 16:07:42

Hope you don't mind my message, my dear friend has UC and he is mid 30's. He has had so many operations and is currently in hospital recovering from ileo-anal pouch reversal. Many times I have thought it will be the last time I speak to him and I never know the right thing to say, but always make sure I keep in touch to see how he is.

So sorry to anyone who is suffering, it truly is unforgiving and seemingly painful condition sad

DecomposingComposers Tue 04-Jun-19 16:18:39

@Wrigleys123

Sorry for your friend. I know a young man who's just had a colostomy due to Crohn's and it seems so unfair. I've been very lucky in that it's taken 20 + years to get this bad. I've had big flare ups but we've controlled it with medication, I've not needed surgery.

Hopefully the UC has been removed now for your friend. I follow Hannah Witton on YouTube - she's 25 I think and had an ileostomy last year for UC and is really open and inspirational. I don't know if your friend would get anything from watching her? She doesn't focus on UC but she has made some videos about it.

fotheringhay Tue 04-Jun-19 16:22:48

Decomposing I'd like to sincerely apologise for being 'abrupt' (rude) to you on an AIBU thread blush flowers flowers flowers You never know what someone else is going through.

The diet I'm on is very restrictive, that's for sure - no grains, pulses, dairy or sugar. I also can't cope with much fibre. But at least it a metaphorical pain in the arse rather than a literal one!

I got so ill that I remember lying in hospital facing a bowel operation, scared to death as I was losing about a pound in weight every day, and thinking I'd do anything to get better. I had already been playing around with things like peppermint tablets (useless) and I thought "there's nothing I wouldn't do to get better"

Cutting out food groups was a leap of faith/desperation at that point. But I started to feel a bit better within a few days and was symptom free in 5-6 weeks. Genuinely felt like a miracle. I went on to have 2 dc, which I wouldn't have been able to otherwise, and although I have a sensitive tummy it very rarely affects my life.

tryingtobebetterallthetime Tue 04-Jun-19 16:34:53

I have had ulcerative colitis for many years. It is a rotten, unpredictable, and embarrassing disease. The most frustrating thing for me is not knowing what will happen next. Right now I am waking at 4 am every day and then running in and out of the bathroom for an hour or so. This despite being on Entyvio. I fully understand the feeling that the bathroom belongs to you! The other thing is the overwhelming fatigue. I feel often like my family must just think I am very lazy.

The fatigue can be overwhelming at times and it stops me doing things. It is really impossible for someone who does not have IBD to understand the extent of the negative effects it has. I am currently very worried I am failing Entyvio and will end up back thinking about other drugs or even surgery, which has been suggested but really scares me.

Today I had a long argument with a low flow toilet in a public bathroom, which would not flush properly! Argh. Just another aggravation.confused

I truly believe we need to support each other.

DecomposingComposers Tue 04-Jun-19 16:38:26

fotheringhay

No apology needed, but thank you. Different threads are different threads aren't they? You're simply discussing whichever topic so no reason for you to apologise.

Your diet sounds quite similar to the one that I've found works best for me. One consultant suggested the no carb because he thinks I absorb sugars too quickly which then affects insulin production. I had some success with low FODMAP in the past so ended up combining the 2.

It is really restrictive but I've felt well on it until this turn out. Keeping everything crossed that it settles down soon and I can get some normality back.

I don't know about you, but I find after every relapse that I end up a bit worse after it and then that becomes the new normal.

I just find it so hard to manage every day life during flare ups. Work becomes practically impossible because I need to be in the toilet so often and no way can I risk car or train journeys.

DecomposingComposers Tue 04-Jun-19 16:42:40

tryingtobebetterallthetime

Oh I'm sorry you are having such a tough time.

Public toilets are just the worst part for me. The thought of using them is probably the greatest barrier for me to overcome. The times that I've suddenly had to use one and had people banging on the door because I've been in there too long or been out and needed to go urgently but you can't find a toilet. I'm just sick of my life being ruled by this.

fotheringhay Tue 04-Jun-19 17:06:15

It is just a total nightmare, I agree no one knows unless they've been there.

I don't want to count my chickens (something I can actually eat on this diet!) but I haven't had a relapse since I started it in 2005. Well, I've had very minor symptoms if I don't stick to it for several days in a row, but they've always gone again instantly as soon as I'm strict again.

Gluten is the absolute worst offender.

DecomposingComposers Tue 04-Jun-19 17:13:09

Gluten is the absolute worst offender

Oh with you there. I wonder what exactly it does that causes the problem? I'm not coeliac, they've tested me so many times but yes, gluten is definitely a trigger as is lactose. Onions and garlic are also a big one for me as well as apples, potatoes and rice.

My food, when I'm eating is a handful of nuts at lunchtime and then either salad leaves and some form of protein or a chicken breast and green beans. That is it. I have weeded out everything else and that is all that is safe for me now.

fotheringhay Tue 04-Jun-19 17:35:32

F'ing awful isn't it. Forgot to add garlic and onions. These things have always been fine for me even when very ill: eggs, olive oil, coconut oil, plain fish, plain meat. I'm ok with potatoes now thank goodness, because there's always a snack I can have when I'm out. Dark chocolate is also ok (praise the lord).

The theory I went with at the start, which I think might be true, is about starving out 'bad' gut bacteria so the 'good' ones can grow. Initially I was on the Specific Carbohydrate Diet which makes you eat a lot of plain yoghurt.

I've never told a single doctor about this because I don't want to face their negative reaction. You'd think they'd ask about it at GP appointments, considering it's meant to be life-long, but no, they never have. So weird

tryingtobebetterallthetime Tue 04-Jun-19 17:50:07

Thank you decomposingcomposers. Yes, public toilets are the worst. I worry about noise, as do most of us I think, and have been known to sit in a stall desperately waiting for whomever is fiddling with hair and makeup to just LEAVE so I can relax and attend to urgent painful business! I laughed very hard at the Mom with IBD who joked that her five year old was great at turning on the hand dryer to mask Mummy's noises.

The toilet today was in a new modern museum and it was determined not to waste water...

DecomposingComposers Tue 04-Jun-19 17:56:32

fotheringhay

I was really lucky in that I was referred to a neuro gastroenterologist who has a special interest in this. It was he who suggested this diet alongside loads of supplements that he has identified as necessary when on these restrictive diets plus he told me to take biokult capsules to encourage good bacteria.

Occasionally it has come up at the GP and they start to question it but when I point out that it's sanctioned by Professor so and so they shut up.

Even this diet, although it controls symptoms, it is so restrictive. Going out to eat is impossible. Going to friends houses I take my own food because I feel like such a nuisance. This disease literally affects every part of my life.

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