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Original poster

Crohns Disease and Colitis

81 replies

paffuto · 03/06/2019 23:52

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.

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Original poster
paffuto · 09/06/2019 09:08

Hi all. Been away from MN all week feeling sorry for myself, ashamed to admit after reading all you guys Flowers. All I did was help DH unpack shopping delivery on Tuesday, was then hit with really bad fatigue and took to my bed. Thanks everyone for the food tips. I'm going to try no gluten now. I'm already dairy free (except for natural yogurt) and no sugar, pulses.

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Original poster
paffuto · 09/06/2019 09:17

Decomposing any news yet from your recent colonoscopy (poor you Flowers) or when they will start investigating ovarian mass? Will you manage to return to work as you had hoped?

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paffuto · 09/06/2019 09:32

Anyone else relieved when all the family are out, then you can sit on the loo as much as you want? Ridiculous way to live isn't it?

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paffuto · 09/06/2019 09:36

Decomposing I'm going to watch Hannah Witton today, thanks for that info. Inspiration is just what I need to stop feeling so sorry for myself Blush

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tryingtobebetterallthetime · 09/06/2019 09:56

Hello IBD friends

Feeling a bit down with it all myself, although I am doing better than I have been. It was cold and rainy yesterday and I was feeling the fatigue so I did almost nothing except read and snooze. Thankfully we are near family that kept DH busy.

Sometimes I just want to scream "please go away" to the horrible business. I truly get liking to be alone so I can sit in the bathroom in peace! Last week DH left for a 15 minute errand, and I scuttled into the bathroom. Shock and horror he was back, son and gd in tow, calling my name in two minutes as he met them outside. I found myself shouting back "I'm in the bathroom" and then sheepishly coming out and apologizing for my little outburst. Oh the embarrassment.

We need to be gentle with ourselves and accept that sometimes bouncing about is just not on. Today my eldest DGD is coming over to do a craft project for a Father's Day gift for her Dad. I know that will get my mind off my guts for a bit! Now if I can just contain the mess of paper bits and glue etc.

I have a sigmoidoscopy coming up at the end of June to see if the Entyvio has healed the mucosa. I am afraid it hasn't give how I feel. That is sometimes the worst. Just not knowing what is next. But I am lucky, I still have my colon.

Happy Sunday!

fotheringhay · 09/06/2019 10:40

I feel for you tryingtobe

You're not alone Flowers

Original poster
paffuto · 09/06/2019 11:45

Just watched some Hannah Witton and what a brave young lady! Some of her comments resonate with me. ie: her sigmoidoscopy was really painful because they sometimes go a bit further up and her colon was inflamed. Thank goodness, thought it was just me! I felt like a baby because I just wasn't managing with only gas and air. And the colitis pain she describes as contractions. I was once in A and E with it and was told it was radiation cystitis pain (from pelvic cancer treatment years ago) Now I have more idea what's going on. Trying hope you have a good time with DGD and hopefully take your mind off things Flowers

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Original poster
paffuto · 09/06/2019 12:02

Trying hope I haven't worried you about the sigmoidoscopy. It's not supposed to be painful, just a bit uncomfortable. I was only there to have a cyst removed from the sigmoid and now realise why it was painful (probably inflammation). Have received no treatment or discussion at all for Colitis, just happened to notice the word in a physio report and thought it was a mistake! Even when I had diarrhoea for months and lost four stone, no one mentioned Colitis! Anyway, I do hope your sigmoidoscopy is ok and as it should be - just a bit uncomfortable.

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tryingtobebetterallthetime · 09/06/2019 12:14

Thanks for the support. I think Hannah Wilton is amazing also. So brave and positive although I am sure she has her moments. She went through so much.

I find sigmoidoscopies painful too. They asked me if no sedation was ok as that is usual and I said yes, so some deep breathing might be in order. My last scope was a colonoscopy last Fall and it was painful also although I had sedation. My GI specialist is expert in IBD but he just shrugged when I told him it hurt. Most people including DH say they felt nothing. Maybe it's just us IBD sufferers who feel it.

Does anyone else wake really early and have to make multiple bathroom trips? This didn't happen before but lately I wake at 4 am and am marching back and forth multiple times before it settles. It is almost like an alarm clock.

If anyone else likes paper crafting, my DGD are making a poster type picture with cut outs of her hands around a poem for Dad about how little hands grow up. I found several of these poems and I think her Daddy will like them. The hardest part I think will be having her print the poem neatly and in the space.

tryingtobebetterallthetime · 09/06/2019 12:16

Pafuto you haven't worried me at all. I am experienced in these things after all these years. I get very nervous but know they are a necessary evil. If only none of us had to endure them.

fotheringhay · 09/06/2019 12:20

That's a lovely Father's day idea, thanks! I'd been putting off giving it much thought as I'm divorced now and it's a bit upsetting

Xh was useless when I was ill, didn't help me with anything and was unmoved when I found a diet that fixed me, whereas I was totally elated. Wanker. Anyway that's a whole other thread

Original poster
paffuto · 09/06/2019 14:19

Fotheringhay sorry you didn't get support. You really need someone understanding and caring when you're ill. I know I'm lucky to have DH, from what I hear on MN, they're few and far between.

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paffuto · 09/06/2019 14:24

No trying I don't have that regular at night, only when I'm having a flare.

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fotheringhay · 09/06/2019 14:26

Thanks paffuto glad you've got a good one. My standards are so high now, it's lucky I'm happy to be single for a while!

Original poster
paffuto · 09/06/2019 14:27

An idea for the poem trying might be to write it separately on a piece of measured paper then stick that in the space?

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tryingtobebetterallthetime · 09/06/2019 14:37

Fotheringhay I am also sorry you didn't get support. I have been with my DH a long time and I know how hard it is when you feel really awful and they just don't get it. He is like many men and thinks he should do something to fix it. This tends to end badly as he starts making suggestions that can really annoy me. But overall he is there for me. I am fortunate that way but I have to give him space. He gets very cross with me sometimes when he thinks I should be trying out yet another medication etc. but I just want a break from doctors.

I know he also hates (as do I) how I feel on prednisone, which I have taken a lot over the years. It makes me very grouchy, moody, and sleep deprived.

Thanks for you

fotheringhay · 09/06/2019 14:44

Thanks. He wasn't actively unkind or anything, just completely ignored it (and everything else about my life, by the end)

Shame about the prednisone, sounds like my perimenopausal symptoms! I'm having a slightly early menopause, but I don't think it's connected to my illness, though I did stop having periods for a while (long time ago) due to losing too much weight, that was scary.

TheNemesisOfLame · 09/06/2019 15:07

UC plus 10 years here.

I did the SCD when my consultant gave up on me as his new treatment protocol didnt help me , he thought steroids were the devils work and he sent me to see a surgeon...

Long story short - changed consultant and my diet. New consultant said I could stay on steroids and taper super slowly and at my own pace. SCD helped me to feel in control of things. Both of which brought my symptoms under control. And I've been off the Pred for 4/5 years.

I'm now back on an everyday diet....and everyone ELSE is low carbing lol.

If I get stressed I usually flare - trick seems to be spotting it early and dropping carbs whilst briefly upping the drugs. I did need Pred a month or so ago (redundancy at work and family bereavement) but it was luckily sorted with a short course.

If your bowel is irritated they need to be really careful when doing a flexi sig. I can have them without sedation but always have it for a full colonoscopy Wink

Multiple bathroom trips in the night is one of the signs of a flare...

tryingtobebetterallthetime · 09/06/2019 17:15

Paffuto I used your brilliant suggestion about the poem. We just finished the project and it looks great, even better than I expected. We decorated with little die cuts made on a Sizzix Sidekick like little butterflies. Really fun and definitely took my mind off colitis. The first time I made a die cut I thought it was a miracle and I was already over 60! If I am not careful I will spend far too much on paper and supplies.

Re the flex sig I hope they are careful! Yes, being up at night is a sign of a flare which is why I am worrying. Flares always cause tons of stress. Can't wait to get home in time for a scope (ha ha).

I live in Canada but come to the UK to see our family each Spring, so I try to spend lots of quality time with DGDs. This year I brought the Sidekick along to give them as I got a larger machine. Even the young one loves making little shapes. We made a themed card for her friend's birthday party today after school on Friday.

CocoCharlie83 · 10/06/2019 12:59

Has anyone tried CBD oil for treating the symptoms? I'm having a bad flare up lately and I am thinking of giving it a try

fotheringhay · 10/06/2019 18:37

I haven't, but have you tried turmeric? Also lots of omega 3 and vitamin D - I take these every day as they're meant to be anti-inflammatory.

Once during a flare up I tried nicotine patches! As I read they might help. I can't remember them helping enormously (it was ages ago though) but I think they kept me awake at night, as if I'd had caffeine too late in the day

thebabessavedme · 10/06/2019 21:04

hello, 12 years of UC here, I am so glad that I have found a tribe of people that understand this overwhelming fatigue! I have been in bed since 8.30, after a pretty light day of pottering around, housework, doing the washing, a bit of cooking and now I'm DONE, am not currently in a flare but so so tired its just not funny.

I have given up eating meat now for the last 2 years, seem to help a little, take turmeric and vit d but I'm really struggling with my hair, skin and nails, my hair if super fine, face is spotty and my nails just wont seem to grow (wow, dont I sound like a glamour puss, a shitting old woman with crap hair and acne, what a catch! Grin

btw, does anyone else get a rash just before a flare? I get a really sore scabby itchy rash on my leg, steriod cream sorts it out but I do find it to be a warning of things to come.

CocoCharlie83 · 11/06/2019 09:14

I've not tried turmeric but have tried lots of vitamins and fish oils in the past which haven't worked.

I've not got a rash to signal a flare up but I tend to have very vivid dreams if a flare up is coming.

thebabessavedme · 11/06/2019 11:45

coco, this really is a baffling disease isn't it?, I find that these days i only eat what I really fancy, right now its crumpets with jam, yoghurt, bananas and salmon (has to be grilled with lemon) god knows what a doctor would make of that mix! Grin last flare all i wanted was chinese takeaway, I think it was the salt I was craving, sounds wierd but if I follow my instincts my UC is managable.

CocoCharlie83 · 11/06/2019 16:04

It really is strange at times. When I flare up it doesn't matter what I eat, it is going to cause pain. But when in remission I have been very lucky in that the food which causes issues isn't something I had eaten regularly; veg, fruit, spicy food, milk.

Its weird that I have a really really bad reaction to milk or ice cream but can eat chocolate and butter with no problems