IBD support thread

[AMillionPeopleCheering]

Come here for support and help. Patients and family welcome.

I'll start! I'm 59F, diagnosed a few months ago but probably had it for years undiagnosed. On infliximab. Was on azathioprine but it shut down my immune system. Currently losing my hair.
Don't know anyone IRL with this, so no-one too chat to. Looking forward to chatting and learning from everyone.

My DD is 17 and has UC she was diagnosed just under 2 years ago.
She's about to move to what will be her fourth biologic.
Shes had a rotten time but at least we have managed six months steroid free having spent most of the previous 18 months on one course after another of the dreaded roids.
she is going over to adult services now so lots of change.
She is so stoic and I am in awe of how well she copes on the whole.

I have perianal fistulizing Crohn's. Diagnosed in my early forties just a couple of years ago. For anyone who feels they need more support, Crohns & Colitis UK are amazing and have lots of information on their website plus a fantastic Facebook group where members support each other.

I have loads of problems. Colin removed but bum still a mess. Now live on liquid diet. I'm struggling severely with it all. I'm housebound due to all health problems combined.

TNF inhibitors have been very problematic for me.

I don't know what other options I have

Hi all! My DD 14 has Crohn's, probably since age 6 ish, diagnosed at 11. From her stomach down.
She's on azathioprine, Omeprazole, mesalazine, and adalimubab.

Had a major flare from October to May. Currently doing well though dealing with the new indignity of gynae referral due to no periods having started despite her now being a good weight and height (5ft 4 and almost 9 stone, but she was 7 stone in March before steroids).

We are currently kicking ourselves here for failing to realize that apparently, if we had only sprinkled turmeric on her food we could have avoided the last 4 years of illness....

The worst club to be a member of! I’m late 20s, was diagnosed with UC 6 years ago. Coped fine on basic mesalamine up until a year ago where everything went a little crazy very suddenly and I was very poorly. Now on infliximab, feeling better but not sure yet if it’s fully working or not. Felt familiar grumbles this weekend. Steroids were amazing and kept everything at bay but the side effects were too much for me and I gained several stone on them. I think mentally I find this the biggest challenge (aside from the obvious) I just feel so unattractive and broken. Hoping the biologics do their thing and I can get back to feeling like me. Solidarity with anyone struggling with this, it is total shit. Literally.

Thanks for starting this thread. I have UC, currently in remission on daily mesalazine. I was diagnosed in 2011, agreed 39, during a horrendous flare that nearly killed me, but I'd had problems since my late teens/early 20s that had been dismissed as anxiety by umpteen doctors. My 17 year old DS is currently waiting to see my consultant, having suffered a year of constant severe nausea, so I really hope he's not following in my footsteps :(

Spiderlight - fingers crossed for your son.

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Has anybody got any advice about the hair loss? What do you think the chances are that it will grow back? I know it's trivial compared to all the other stuff, but I've actually found it really tough to watch it getting worse everyday.

DD had initial hair loss on aza but it was explained that she was just doing a big shed of hair that was unhealthy as a result of the IBD. It never thinned enough to be noticeable and looks much shinier and in better condition now. And thicker.

I have Crohn's and had loads of hair loss in the six months after I was diagnosed. I rocked a buzz cut for a bit and it's all grown back thick as ever. They reckon it was telogen effluvium.

I'm another parent. DS also has perianal fistulizing Crohn's, diagnosed age 10 and followed quickly by an emergency ileostomy and a stoma. He's on biologic number 3 now, Ustekinumab, which seems to be working well as he's finally growing!
We are in Ireland, so have a different health system, and I'm grateful to the busy team who look after him. They'll squeeze him into clinic when I'm worried, and have looked after me as well as DS.
He moves to adult care at 16, and I'm already worried about the transition.

Thanks for this thread. It's good to have others who actually understand what IBD is.

My son is now 23, but was diagnosed with crohns when he was 8 after at least two years of symptoms and being fobbed off by doctors! He had severe inflammation all through his digestive tract and in his large bowel.
He was started straight onto azathioprine, steroids and pentasa. It was a really difficult time, especially as I didn't know anyone else with crohns.

Fast forward to 12 when his symptoms nose dived. Even with a diagnosis of crohns, we were still fobbed off. At one point we were told he had an eating disorder!! Eventually after 6/8 months and a weight loss of 35 kg they did another colonoscopy and a capsule colonoscopy and found severe inflammation again and crohns now in his small bowel. He was started straight onto infliximab.

After ups and downs since then, he is doing really well. Now on infliximab injections, working and going to uni. I couldn't have even imagined this ten years ago.

Uc sufferer here.

I was diagnosed 18 years ago after I had my first dd. Had an awful time for about a year, then ended up in hospital for 3 months and nearly died.

I was then put onto azathyoprine and Mezalazine tablets.

Over the years I managed to keep on top of it mostly apart from a couple of bad flares until 2018. I was then put onto humera biologics and it seemed to work @AMillionPeopleCheering i sheeted a lot of hair shortly after starting it.

over the last year things just keep getting worse, and on top of that I now have c diff for the second time in 6 months and feel dreadful.

You all have my utter respect and sympathies. My DH was diagnosed with uc in 2011 and it is relentless and unforgiving. Currently on his third biologic but also recently been diagnosed with lichen planus and arthritis. Apparently he is more prone to autoimmune conditions due to uc.
He never complains but honestly it is awful to see how he looks so much older than he is and with the aches and pains I do worry about his future health.
We are so lucky that he has an amazing IBD team.

I can't imagine how hard it must be for children and their parents who have IBD ❣️.

Whenever I go into the hospital and see young kids getting their infusions my heart goes out to them and their families. Hugs to all of you supporting a child through this.
But hope with the news about MEK inhibitors maybe?

I lost a lot of my hair about three months after my massive flare. I think it was partly very very low iron (I lost a hell of a lot of blood and my iron was still very low even after transfusions), and partly the stress of it triggering telogen effluvium. It did grow back though - it was very very thin for about six months, which was really upsetting, then I had a period when I looked like Tim Minchin, and it then grew back really wavy, whereas it had been more or less straight before. I've never had thick hair, but it was thicker when it grew back than it had been. I used this shampo, although I don't know whether it actually did anything! https://www.fasthair.co.uk/ Apparently rosemary oil is good for hair regrowth as well.

Does anyone have secondary joint problems? I had about two years of palindromic arthritis and tendinitis, which jumped around my body and affected my feet, knees, hips, elbows and shoulders - so bloody painful, far worse than childbirth! It calmed down before I managed to see a rheumatologist, but then a couple of years ago I developed sacroiliitis, and now I get random bouts of inflammatory arthritis in my knuckles and my right wrist. Rheumatology decided it was all 'a colitis thing' and discharged me back to gastroenterology. My gastro consultant keeps saying that he can change me from Pentasa to Octasa if the joint pain gets too bad, but I'm terrified to come off the Pentasa because it's controlling the actual UC so well.

@Bringonthesunforthewashing - you poor thing! My dad had C diff a few times and it's horrible. I live in absolute dread of stomach bugs so you have my sympathy.

Bookmarking to follow. Fellow UC sufferer.

Joining to say that you can get into very long term calm periods! I was diagnosed with UC in my early 20s and I'm now early 40s. I've had Asacol, Pentasa, Octasa, mercaptopurine, Pentasa foam, Humira biologic and lots and lots of steroids. Hospitalised a few times.
Azathioprine made me puke so they swapped me to the mercaptopurine - on that for a decade. The Humira did such a good job and calming my UC that I came off both, tapered. I've been pretty good for a couple of years now. There is hope if the drug combo is right! I will caveat that my arthritis is not so good and Octasa makes no difference to me on that score. Also nobody cares because it's a comorbidity - rheumatology will not see me.
I hope everyone saw in the news recently that the responsible gene/mechanism has been identified, so they can start to target better treatment.

@spiderlight thank you, that’s kind of you. I hope you’re dad is okay now.

I think the next plan of action will be the poo transplant thing, sorry I can’t remember the correct term for it.

Has anyone any experience of that?

Not going to lie, I am feeling sorry for myself. Haven’t been out the house apart from twice briefly since the beginning of November. Prior to that it was June. I just want to live my life, go for a walk, go out for lunch or see family and friends. It’s not a lot to ask is it!!!

Bringonthesunforthewashing - sorry you are housebound. That must be really difficult. I hope you have a garden you can sit in to get some sun.

I know it's an ask, but does your hospital team have psychological support? I'm guessing its unlikely with what I hear about the NHS these days though.
DSs team has a psychology support and it's been so helpful for him, especially as she only works with kids with IBD and really understands the condition and treatment.
From my Facebook IBD group I hear positive things about Faecal transplants, let us know how it goes.

Frustratingly our health board has psychology support for children but not adults.
So despite still only being 17 DD has lost this support now and we will have to source some privately if necessary
It should be an integral part of the care