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IBD support thread

(19 Posts)
GohomeRoger Sat 03-Jun-17 17:14:40

Just that really. I've only had ulcerative colitis for just under 2 years, diagnosed for one year.
The first 6 months I put my symptoms down to stress/IBS. When I started bleeding I finally went to my GP. GP diagnosed stress/IBS even though I was bleeding and had no piles. Blood tests all came back normal, but I pushed for a fecal calprotectin and it was through the roof. I was so ill at this point but it was a 3 month wait to see a consultant, so I borrowed off family to go private.
Diagnosis was fairly swift from that point onwards, colonoscopy showed moderately severe pan-colitis.

My problem now is that my UC is out of control. I've been on steroids for a year, asacol and mesalazine enemas have done nothing. Azathioprine landed me in hospital for a week with liver problems. Been on golimumab injections since December but they've done nothing either. Recently started 6-MP, my nurse called yesterday to say my white blood count is too low and I'll have to come off it if it doesn't improve.

Consultant has said they have run out of options and I'm booked in to see a surgeon at the end of the month sad .

So that's my novella of pain and misery, I'd love to hear yours!

MollyHuaCha Sun 04-Jun-17 18:54:02

GohomeRoger, sorry to hear you are feeling so unwell. Sounds like surgery might help you more than medicines. Hope the meeting with the consultant is productive. Take care smilebrew

lg180000 Sun 04-Jun-17 19:34:03

Hi Roger! I'm sure I'm a bit of an anomaly in that I've not officially been diagnosed with Crohn's but I'm being treated for it anyway.

I'll try and keep this relatively brief but I was admitted into hospital on Valentine's Day after a CT scan showed up an 'inflammortary mass'. I had surgery the next day where they removed it and also my appendix. I was fitted with a surgical drain which revealed after a few days that the surgeon had cut a small hole into my bowel and it was only from further scans relating to this that they have now told me they are 99% certain I have Crohn's and that's where the original problem came from. This came as a bit of a surprise as I've not really had any of the traditional Crohn's symptoms.

Since leaving hospital (5 weeks later!), they have started me on 50mg of azathiaprine a day and remsima infusions every 8 weeks. So far I felt ok as a result of the drugs but I am very achey all the time which I have read can be a result of the remsima. I'm also losing my hair at an alarming rate which they have told me will grow back within 6 months, but at the moment it looks so thin. I feel like I am now paranoid of every twinge or ache that my body has, determined to find something indicating that I've Crohn's.

I have recently started back at work and I think it's only as I gradually get back to normal that the enormity of it all is starting to hit home. I've read some awful stories from people who have horrendous symptoms and I feel like I am one of the luckier ones if I'm not struggling so much but this is still without a shadow of a doubt, the hardest thing I have had to deal with in my life.

Thanks for letting me share my story, hope you get some answers from your doc soon and start to feel better smile

gobbin Mon 05-Jun-17 21:41:22

Although the prospect of surgery can be frightening, sometimes it is the right option at the time. I've had Crohns for 23 years and had three surgeries in between various meds (including an ileostomy). I'm now the fittest and most stable I've ever been.

Hope your hospital team can find the combo that works best for you soon - tratment and surgery options are advancing all the time. Good luck OP 😎

aimzox Fri 16-Jun-17 13:28:59

Hi GohomeRoger. I had symptoms of IBD from the age of 11, but was never diagnosed. At 27 I had a huge flare and was diagnosed with UC - initially proctitis, which rapidly spread to affect my entire colon. I was on Mesalazine initially, then various other pills and suppositories, and spent 28 of 32 months on prednisolone (yikes!). March 2016, having spent 4 years trying various different meds, I was hospitalised with a massive flare, having lost over a stone in a week, and was re-diagnosed with Crohn's. I'm now on infliximab infusions every eight weeks, take probiotics and eat a 'careful' diet, and touch wood have been Ok since - it may be worth asking for a re-think of your dignosis...

Ottiva Sun 18-Jun-17 22:14:14

Tentatively joining...no diagnosis here either. Undergoing tests for Crohns currently

Saw consultant in January for issues I'd been having since birth of DC2 (1.5 years ago), thought I had a posterior prolapse.

Colonoscopy revealed severe rectal stenosis of unknown origin. Biopsy showed not malignant.

Small bowel follow through showed possible stricture of terminal ileum (didn't get a good image as the barium got stuck hmm). Pelvic MRI showed fluid in the rectum which could be due to fistula (even though I've no symptoms)

Next step is MR Enterography and yet another examination under anaesthetic at start of July.

Most likely a form of Crohns, apparently the MRE should say definitively

I do experience some abdominal pain from time to time but don't have any of the other typical symptoms of Crohns. I'm just looking forward to hopefully getting a diagnosis and seeing what the next steps are for me

MollyHuaCha Wed 21-Jun-17 10:32:46

Good luck Ottiva brew

BillWagglestaff Tue 27-Jun-17 11:58:55

Thanks so much for starting this thread - it helps so much to read about other people's experiences. I've found one of the hardest things about Bowel disease is that it's difficult to talk about - it's still viewed as a bit of an embarrassment, I think.

So, I was diagnosed with UC nearly two years ago. Steroids and mesalazine. Stopped the steroids but still on mesalazine and had to have a mesalazine enema thing for a while to halt a flare up. I thought I had it under control but recently I've been getting a lot of stomach pain and increased frequency and urgency and I have just put in a call to my consultant. Really, really pissed off about it. sad

Sorry - I know I haven't had surgery or anything so compared to many I am incredibly lucky. Am just feeling sorry for myself today!

Ottiva Tue 27-Jun-17 22:03:01

Hi Bill, i agree that it's good to see other people's experiences. I don't know anyone with UC or Crohns and find it hard to discuss my issues with anyone except close friends and family.

I've 2 days in hospital next week which I'm dreading but also hopeful I'll have answers by the end of the week.

Just wondering if anyone has found dietary changes have helped their symptoms? I have a relatively healthy diet but there is some room for improvement

BillWagglestaff Wed 28-Jun-17 09:36:55

I'd be really interested to hear about diet, too. I suspect I don't manage mine as well as I could.

MollyHuaCha Wed 28-Jun-17 10:17:51

Re diet, in my 35 yrs of having Crohn's, this is what I've found works for me.

During flare up:
Fast or eat very little

During times of moderate symptoms:
Low fibre
Low sugar
Low fat
Lots of ginger tea, peppermint tea
Simple meals such as steamed fish, rice, steamed carrots, bananas, boiled or baked potatoes, homemade soup (clear or pureed)
Non dairy milk & yoghurt (cashew, almond, soya, coconut)
No dairy (except kefir) or gluten
No canned food or ready meals
No chilli, curry, onion, garlic, beans
No alcohol
No restaurant meals or take-aways

During remission
Moderate fibre
Low sugar
Moderate fat
Fish, chicken, slightly wider range of fruit and veg - asparagus, lettuce, cuc, apples, berries,
Porridge
Gluten free bread, crackers, cereals
Non dairy milk & yoghurt
Almond butter
Low alcohol (2 or 3 drinks a year!)
As far as poss, no gluten or dairy (except kefir)

For a couple of months I have been having a small amount of kefir daily. It's dairy, but it's so high in probiotics I can tolerate it. The kefir apparently changes your bowel bacteria and I believe it is possibly helping me.

I'd love to hear others' dietary experiences for Crohn's. I'm still learning!

Tippytappytoes Wed 28-Jun-17 18:27:46

Can I join? Had an acute UC attack in 2005 which came as a surprise as I didn't know I had it, luckily I had a really good GP that had the foresight to book me in for a clinic appointment. I was admitted on the Friday and they tried to stabilise me but I ended up being taken down at 1000 on Saturday night for surgery. I awoke with a ileostomy and my surgeon telling me that he was glad he went ahead as my bowel was very close to perforating. I had my whole large bowel removed (and donated to medical research). It was a huge shock as so much had changed so quickly but I was kinda glad I was still alive. Was a little bit of a celebrity on the ward for a while, groups of medical students were dragged to my bed, it turned out I was rare type of patient, severity wise one they only see a couple of times a year.

Took a little while to feel sorry for myself and mourn for what I thought I had lost but then I realised that actually not much had changed, just the manner in which I expelled my waste was different.

For the next 2 and a bit years I rocked the stoma, and had 2 further operations; a ileoanal pouch formation and then being plumbed back in.

I have to say I'm very lucky that I have such a good IBD clinic and GP support, I have only had 2 further re-admissions. 1. Was an over reaction by an out of ours GP (first pouchitis attack - unknown at the time, I just wanted stronger painkillers but ended up with a night in A&E on a Saturday night FUN! and a ward stay on Sunday until I could see a specialist on Monday and NO PAINKILLERS!) and 2. When I got severely dehydrated when I got a sickness bug on top of pouchitis.

But it occurs to me that before 2005 how much pain and discomfort I had suffered over the years that literally stopped after the op, that was just written off and IBS or period pain. Makes me a little mad because I might still have my bowel if I had been properly diagnosed earlier. It is slowly changing but you still get the lasy diagnosis of IBS.

To the PP who is considering a stoma, it really isn't the end, but can be the beginning of being pain free.

Lilybensmum1 Wed 28-Jun-17 18:43:24

I come from a slightly different perspective my DH has severe UC he failed azathioprine and a year ago started Simponi injections, his faecal calprotectin went from above 1300 to under 400 in 4 months amazing!!! However latest faecal calprotectin was over 1000 again, yet, he has minimal symptoms no pain, blood mucous and goes to the toilet maybe 2-3 times daily. He feel the best ever.

We are ploughing on at the moment but the continual waiting for news is gutting, it's great to hear positive stories related to pouches and ileostomy's I sort of wish he would have surgery and been done with the drugs and tests, I say this as a nurse who directly deals with these patients.

IBD is an awful disease and it's encouraging to hear how others are coping with it.

Ottiva Fri 07-Jul-17 21:49:50

So I got an official diagnosis of Crohns today - I'm not sure how I feel, I knew it was on the cards but it is still a bit of a shock.

On the plus side my MRE earlier in the week didn't show any stricture in my terminal ileum, just inflammation and ulceration. I also had EUA of my rectum; they found a fistula which hadn't quite reached the surface. They opened it and inserted a seton. It all feels a bit numb and bruised "down there" at the moment but no real pain.

Next step is to see a Gastro, Humira mentioned as a possible treatment. Then back in 2 months to have seton changed.

Hope everyone is doing well especially GoHome (think you'll have your appointment by now?)

BoogleMcGroogle Sun 09-Jul-17 20:51:46

I'm a long time Crohns patient, having been diagnosed at university 20 years ago. It's not been easy, and I've needed lots of treatment. There was a time when I was stuck on steroids, with nothing else shifting the symptoms, and then I had 17 years on azathioprine. Still, a good dose of denial and tendency to be stubborn means that I've managed to have a successful career, two children ( both breastfed), travel and have a happy couple of decades. And, following a colonoscopy showing minimal inflammation, I've finally been able to quit my medication and have had no symptoms for 10 months. The initial illness and diagnosis is really hard, and it takes time to sit that with the rest of one's life, but I hope that I'm testament to the fact that there's a busy, happy and hopefully healthy life to come smile

MollyHuaCha Mon 10-Jul-17 21:04:42

Hi Ottiva, the good news is that there is a lot more awareness about Crohn's these days and the treatments are more effective. You'll have good times and less good times, but with a little planning, you can do whatever you want with your life - travel, career, sports, hobbies, relationships, children. Take care smile

Ottiva Mon 10-Jul-17 21:47:25

Thanks Molly, I just feel so shell shocked and weepy and not sure how I'm going to cope in work tomorrow (never mind anything more long term smile).

Has anyone else had a Seton stitch? I had mine placed Friday, it was fine Saturday but has been sore yesterday and today. I braved looking with a mirror earlier not a pretty sight and it looks red but not infected. I'm hoping it will settle down in the next few days

MollyHuaCha Mon 10-Jul-17 22:05:17

It's normal to feel very upset. Take your time to gone to terms with it. You are still the same person you were before!

Actually, I was pleased to get a diagnosis at age 19 as I'd previously had two years of feeling lousy as being told it was 'all in the mind'. hmm

Now I'm a few decades on, I have had many flare ups but also many times of remission where I've been virtually free of symptoms. smile

You can decide whether you want to share your diagnosis with others. I've generally chosen not to as I've not wanted to be defined by my illness.

But these days I do tell people and I find that helps others to understand my 'strange' behaviour such as:

'Sorry, I cannot ever eat an Indian takeaway/Chinese meal/fish and chips'

And 'Yes MIL, I'm aware you served me broccoli last year and I enjoyed it, but now I cannot eat it anymore I'm afraid'

And 'Yes I know the theatre play is about to begin and I've just been to the toilet, but believe me I do need to go again!'.

Take care Ottiva. Plenty of support from me and others on MN if you need it.

Ottiva Wed 12-Jul-17 16:05:58

Fuckity fuck, I have a post-op infection. Started antibiotics yesterday but still have a high temperature and generally feel as though I've been hit by a bus.

More than a little pissed off - I had no symptoms or issues from the fistula before my op last week (it hadn't opened to the surface). Now I can't sit, stand or lie without pain not to mention discharge and other unpleasantness. I'm sure the surgeon had his reasons but still.

I'm supposed to be going on hols next week, I'll have to forget about swimming & cycling if I'm even up to going at all

Apologies for the me, me, me post but I am trying to put a brave face on at home for DH and DCs

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