I need help. How is best to support my DH who we believe got an IBD?

[HipsterMum]

Hello everyone. I am feeling very low at the moment and struggling to find the right way to support my husband. He's had problems with his digestive system most of his life. They started when he was in his late teens but were quickly dismissed by his GP as just a stage/IBS as a result of stress. They never fully went away and now he is 30 he's been having more frequent periods of flare ups that last weeks. I insisted on him seeing a doctor for a long time now but he always claimed he felt better/what would the do/ I am used to it by now etc. He's never had bleeding or lost weight and so it didn't really affect his life that much, he's got a good job and a family (we got 2 kids together). However lately, it started affecting him more and more. He feels tired all the time and really struggles to pay attention to things. Because of tiredness he started having more frequent mood swings, our intimate life has taken a turn for the worst too. He claims he just feels out of shape and exhausted and just too much is on his mind. It is not a big problem because we find other ways to spend good time together and just watch a movie or cuddle. His symptoms are really bothering him though especially the need to spend a lot of time in the bathroom and mucous discharge that is persistent. Rarely he has episodes of severe cramps in his rectum that usually happen randomly at night time, usually after a stressful time at work. After a lot of reinsurance and support he is finally going to the GP on Tuesday (a lovely lady who I met myself and I am hoping will be supportive and finally push for some proper tests). It is definitely something more serious than IBS because I've seen him struggle with his self esteem as a result of that for some time.

I am struggling to support him because it seems like he is going through a bad flare up at the moment and he is just not himself and whatever I say or do is not really enough. I would honestly appreciate any support in terms of any advice at all on how do we make sure GP doesn't come up with some useless diagnosis like IBS (i have ibs but the symptoms are nothing what he's got)and just dismisses his concerns entirely? What was most helpful to you in your IBD journey?

I love him very much I know it cannot really be cured but I would love him to try at least some medication hoping that it would calm the inflammation down.

Any advice?

www.crohnsandcolitis.org.uk/
Brilliant resource for info and advice. GP should take some bloods and a stool sample. Tbh bleeding, diarrhoea and weight loss are the most common symptoms of IBD and afaik doesn’t present in IBS, whereas mucous and pain do. There are no OTC meds for IBD. They need to be prescribed by a consultant after confirmation of the IBD diagnosis, so even if GP suspects it’s IBD all they will be able to do is refer him to gastroenterologist. Good luck.

Thank you!
Anyone else?

I’m afraid he’ll have to be referred for a colonoscopy, which is really the most likely way to diagnose it. I was dismissed (IBS, food intolerances) until I had one which showed ulcerative colitis. It made a big difference to know, I found. I tend to deal with it with humour. Let your DH be your guide. Good luck to your DH!

Thank you so much for your message! Yes , he is determined to have an honest talk with the gp in 2 days time because its been going for so long and he is tired of feeling self conscious about that. I believe it would be a huge relief for him to finally get a diagnosis to be honest. He has got me to support him through it I am just hoping that meds can calm down the inflammation thats been happening for so many years already with frequent flare ups.

Hi OP, I have ulcerative colitis and the best thing that I've done is be diagnosed (as opposed to dismissed and told it's IBS / stress / diet related) and put under consultant lead care. There was a lot of trial and error at the beginning, but I now have meds that work and it very rarely disrupts my daily life.

Working from home also helps. The commute is miserable when you're having a flare and it helps with the tiredness.

Other than that, just show lots of empathy to your husband. For me IBD tiredness is like pregnancy tiredness - an early night doesn't even take the edge of.

Good luck!

Also I'd suggest talking about it openly around your children. They may of course never have IBD, but it can run in families (it does on my mums side) so it's really important they know they can talk to you if anything is off with their poo without being embarrassed about it. I don't know if that's age appropriate yet, but one to think about for when it is.

Has he been tested for coeliac disease?

Blood tests can be helpful to check his vitamin levels, Vit d, b12 and iron deficiencies which can be common with absorption issues won't help the lethargy, concentration general stress symptoms

@LincolnshireLassInLondon

Also I'd suggest talking about it openly around your children. They may of course never have IBD, but it can run in families (it does on my mums side) so it's really important they know they can talk to you if anything is off with their poo without being embarrassed about it. I don't know if that's age appropriate yet, but one to think about for when it is.

Thank you so much for your messages! Yes, IBD definitely runs in his family his mum suffered all her life but was never investigated any further and just given an IBS diagnosis. I believe a big reason why he finally decided to seek help and to undergo necessary check ups is due to being a dad. We are very open with our children and do not 'hide' anything from them. We understand that his diagnosis would be helpful for our children as well in the future (because of the genetic factor). So glad to hear that meds worked for you! The only thing I am worried is his concerns being dismissed because he doesn't fit the pattern 'loss of weight, bleeding' but he does have all the other symptoms, for example even sores in the corner of his mouth that usually only appear during flare ups. 😕

@danadas

Has he been tested for coeliac disease?

Blood tests can be helpful to check his vitamin levels, Vit d, b12 and iron deficiencies which can be common with absorption issues won't help the lethargy, concentration general stress symptoms

No, he's not been tested for anything ever since this initial diagnosis in late teens with IBS. That was not even based on any tests. He kinda lived with the condition all these years but recently has started to have more and more flare ups or they last much longer ... although discomforting symptoms persist all the time. I am hoping his GP will take him seriously and refer to necessary tests.

@LincolnshireLassInLondon

Also I'd suggest talking about it openly around your children. They may of course never have IBD, but it can run in families (it does on my mums side) so it's really important they know they can talk to you if anything is off with their poo without being embarrassed about it. I don't know if that's age appropriate yet, but one to think about for when it is.

Also my FIL, my DH's dad used to embarrass him a lot when he was in his teens about his 'toilet habits', constantly commenting on them which added to him never wanting to discuss it with anyone else even doctors. Its absolutely horrible to be honest but I am glad he is finally ready to talk to someone about that.

Wow! Your poor DH! It is great that he's finally ready to talk about it and ask for some help. It sounds like that is in large part down to your encouragement and support.

Pain and mucus will make GPs think of IBS, not IBD. DS has severe IBD but doesn't have any of the regular symptoms of passing blood, so it can be missed by GPs.
It is worth asking for a faecal calprotectin test to see if there is inflammation and if more testing is needed. Blood tests won't identify IBD inflammation. Maybe your gp can do it, but you might need a consultant referral to get the test. Can you afford to a private appointment to by pass waiting lists?

As others have said a stool test and cameras - my son has IBD and it was a relief to know what it was and so far it is managed very well.

Couid also be celiac and thst can be ruled out via a blood test.

@Remmy123

As others have said a stool test and cameras - my son has IBD and it was a relief to know what it was and so far it is managed very well.

Couid also be celiac and thst can be ruled out via a blood test.

Thank you! He is open to any testing just doesn't want his symptoms to be ignored once again and labelled stress related/ibs what seems to be a very common thing unfortunately.

Hello everyone! Husband's meeting went well with the GP. Has got 2 appointments booked for some blood/stool samples. If any of them show inflammation, she will refer him to specialists. She seemed to think that his symptoms might possibly be colitis or proctitis.

This is great progress!!

Glad that things are in motion to get him a diagnosis. Whenever DH has to do a stool sample I take them directly to the hospitals pathology lab so there’s no delay in getting them tested (gp surgery “lost” a couple and 1 was left over a bank holiday weekend and had to be done again)

Sounds like a positive meeting with the GP and hope he gets his results ASAP and referred to the right specialist.

I was diagnosed with Colitis around 8 years ago. I had to fight hard to get listened to even after I was referred to the specialists. My blood markers never really showed inflammation even though I'd be losing lots of blood, losing weight and going to the toilet 30+ times a day. Eventually they done stool sample which showed really high levels and now they always do stool samples on me as well as bloods.

I also had a lot of hosp appts cancelled so wasn't seen for over a year whilst I was suffering and medication lot working. In the end I made a complaint to PALS and things got a lot better after that. My care is great now and I feel very looked after and listened too.

You sound very supportive, he's lucky.

It's hard to offer advice as IBD effects everyone differently and medications work for some people and not others. If he does show inflammation they will probably send him for a colonoscopy so they can see and also take biopsies of the bowel tissue to determine what type of IBD it is. Getting him in his favourite food after this procedure will be a nice gesture as he will be starving.

The CCUK website is really helpful as well as their private forum on Facebook of you are on that. It's good for asking questions, it was a saviour to me when I was first diagnosed.

It can be a very isolating disease in lots of ways, anxiety as a result of the symptoms is very common too.

If he gets achy joints running him a nice hot bath is a nice thing to do. I love it when my BF runs me one when he knows I'm struggling.

You could order him a radar key off of eBay - helps when you're out and about and need the toilet quickly.

But yeah, I would just say don't give up and make sure he keeps pushing.

Thank you so much everyone . Hoping to hear back about his test results this week and will take it from there. One step at a time. So sad to hear that children tend to get it more often these days and so early on. I mean my own boys would probably be at risk if husband's diagnosis is confirmed.
@Amichelle84 thank you for you message. I am so sorry to hear that it took a long time for gps to even take a stool sample (I mean how hard can that be for them??). It seems like for so many the biggest relief was to finally get this diagnosis and to get referred to the right team of specialists. I cannot imagine what it must feel like not to be taken seriously even after all these exhausting symptoms. Hope you are feeling better now.

Thank you everyone for the support once again. X

Hello everyone! I have an additional question to everyone. Husband just got all his results back and.... they are all within the normal range!! So really the GP just said she can only suggest that it might be a really bad form of IBS. So my question is can IBD go undetected in stool samples and only found for example through colonoscopy? It is just just so weird that he's had some of the very unpleasant rectal symptoms for over 10 years now and they don't look like IBS at all. She prescribed some medication to be taken before meals for cramps now and made an appointment in 3 weeks to see how he's been getting on. She said he would normally only get a referral if nothing helps. Don't really know what to do next. It started to affect him mentally as he doesn't want to go out as much anymore and is feeling more and more distressed about it all . 😔

did he have any test for hypolarie bacteria (cant remember exact name)?
if he has it they give antibiotics for that.

how about taking some probiotics?

hope you will find a solution soon.

@Remmy123

As others have said a stool test and cameras - my son has IBD and it was a relief to know what it was and so far it is managed very well.

Couid also be celiac and thst can be ruled out via a blood test.

I wasn't diagnosed with coeliac disease until I was 40 because the antibody tests kept coming back negative. I was ill for 15 years up until this point.

He needs an endoscopy for coeliac biopsies if the antibody test is negative, he could get a private genetic test for DQ2 or DQ8 which are the most common coeliac genes first if he wants to speed things up.

He needs blood tests for inflammation and deficiencies from the GP and a colonoscopy.

If he's had bleeding I would push for an urgent referral to rule out bowel cancer. Lost my best friend to this three years ago, she admitted to ignoring symptoms and was stage 4 when she was diagnosed.

If all of this is negative it could be IBS

Normal tests won't rule out some things, push hard for biopsies and colonoscopy, so many GPs ignore how much this is impacting his life.

Don't despair, the process has started and he is going back in three weeks. Instead of focusing on IBD, just keep track of his symptoms and be sure he emphasises to the Dr how much it is affecting his life. There are still other things it might be, such as coeliac, polyps, an obstruction... My Ddad had similar symptoms because there were adhesions between his gallbladder and part of his bowel, for example. For most of these, he will end up having a colonoscopy anyway, so they wouldn't miss the IBD diagnosis, even if he's referred with different concerns.

The more information he can gather over the next three weeks the better. Can he keep a food diary and a note of how often he is going to the toilet and any other symptoms (the mouth ulcers, feeling like he needs to go straight after he's been to the toilet, cramps...)

I have UC, once you know you feel you can go straight to the Dr at the first sign of trouble and have it dealt with quickly. However, I also remember my dad jumping the gun and assuming IBD but getting the much nicer "fixed by a small operation" diagnosis instead.

Good luck to you both, he's lucky to have you and I hope he gets some answers soon.

I assume he's had a stool test called fecal calproctectin. It's good if that has come back in the normal range but can I check nothing contaminated the stool I.e., urine or toilet water?