Pls talk to me about IBD

[BikingBeatrix]

It looks like my son (28yo) will be diagnosed with IBD and I have a few things I’d love more info on. He had colonoscopy 2 wks ago and was given a very detailed report. They found a lot of polyps, both flat, sessile ones and the ones with necks. In several places, at least 4 sites, of his colon. Some were removed but others couldn’t be. No mention of inflammation. He had an urgent referral to a surgeon with a view to surgery. WE saw surgeon this week - he wanted me there - and she said she thought it was IBD. I told her my mum has UC and I have several AI conditions incl a GI one, so obviously there’s a strong family history. She’s referred him on for MRI of small bowel and then to GI team. I assume the MRI will help them to decide if it’s Crohn‘s or UC. Does that sound right? (depending on whether small bowlers involved)

She’s also going to write to him with results f biopsies that were taken during the colonoscopy. I’m really very pleased with her, she was sharp, on the ball. DS thought so too. However, we forgot to ask what happenswith the polyps? If he has got IBD, then he’s likely to start on medical treatment for that fairly soon, I hope. Is it therefore likely that the polyps will shrink or reabsorb if the inflammation is got under control with tablets? Or might he still need Obviously it’s great if he doesn’t need surgery but my understanding is polyps need to be got rid of somehow? Sorry this other lengthy. I’ve been sitting mulling over it a should now go to bed.

I've got IBD (crohns) tbh I'm not sure about my polyps and if I have many but I have a lot of scaring which causes me issues, like restrictions. I've had to be dilated during a colonoscopy and it wasn't nice. The only medication I've been on are steroids but I've spent the last 4 years living abroad (one year back in uk out of 4) as I was diagnosed just before moving so to be medicated would've been hard work and I think I'm doing okay without it. I manage anyway. Sorry if I've not been too helpful.

Oh I was diagnosed initially due to high CRP in blood and my calprotectin stool sample test was positive. Then I had the colonoscopy which proved positive due to their findings, then lastly the MRI which pinpointed exactly how much damage I had and where.

I need to apologise for all the typos. Late night and middle aged eyes/brain responsible!! Thanks for your answers, BG. Surgeon did remark on his bloods, high CRP. He was given a stool collection pack. I must check he‘s done it - he also has depression so I’m keeping in touch with him quite closely. In many ways it’s good he’s getting a diagnosis and treatment obviously but with the MH stuff this is a lot for the lad to deal with. I did find a bit more info about removing stubborn polyps and surgical techniques. I‘ll have to just wait to see what he’s told next. I wonder if he’s got strictures too - the pain he has is quite high up. We’ll get more detail I hope.

Can only offer sympathy - but having a proper diagnosis and an enthisastic clinician on the case is a big step up from the usual, well done all round.

A friend with IBD has had some relief from the stabbing pains and sleepless nights by following the low FODMAP diet under medical supervision. This is clinically recommended for IBS and only sometimes improves the condition of IBD sufferers, but may be worth discussing with the medics. It's a really odd selection of foods to avoid.

IBD and depression are quite common together, as with any chronic condition you can get very down, I've been on anti depressants and they've also been known to help numb/mask pain. It's tough having IBD. Diet plays a part but what a normal person classed as a healthy diet is NOT what an IBD sufferer classed as a healthy diet. High fiber and most fruit and veg are usually the enemy.

No diet will cure IBD. Certain diets relieve the symptoms but do NOT believe what you read and please don't tell your son about the latest NEW diet. As a crohns sufferer there is nothing worse than a non sufferer telling me what I should or shouldn't be eating.

It’s okay. We‘re both quite cynical about fads! DS was brought up veggie and still is so I think it’s enough for him at present to see what might trigger symptoms and maybe stop that and review. After all he needs to eat something!! I had to leave nursing due to my own health but I maintain an interest in health/illhealth so I kind of know what might or might not help. My mum’s UC went on for years/decades and she avoided certain foods but really ate most things. She wasn’t veggie.

The depression link is interesting, isn’t it. DS actually told me on Monday he‘d been listening to something on he radio about it. It’ll be interesting to see if his mood improves by getting the inflammation under control. I’m a chronic depressive too. I’m not certain treatment after my last AI flare has helped my depression or if I’m just feeling better because I’m more settled with the situation. The boy‘s been unwell for a while so I think he’s relieved they’re getting to the bottom of it (we like our puns). SHame we won’t see the good surgeon again unless he needs surgery but here’s hoping the rest of the team is as good. It’s a hospital I’ve never had any dealings with but someone I know online (she has the same rare variant of autoimmune condition as me) gets her care there and seems happy with it. Thanks to both of you for answering.

I've suffered with depressive feelings since late teens, I think I've had crohns all my life, since being 10 at least, only diagnosed when I was about 36 after really really suffering month after month. I 100% believe that IBD and depression are linked. I've read something recently that implies your gut/stomach etc is pretty much your 2nd brain. I know for a fact that when I'm flaring I become very low, but even when I'm reasonably healthy I struggle to be chirpy. Would I feel this way without IBD? I don't know, I don't think so. It blights my life. It's the worry about the future and when I'm next going to be suffering etc.

Oh gosh yes - I didn't mean to be espousing strange faddy diets, just passing on an actual medical recommendation made for someone in a similar boat.

Best of luck to your DS - and to you too.

I wasn't saying you were Spoon (kind of a cross post), the FODMAP diet can help some but it's extremely hard going and there is no evidence it actually works, but yes if you go on it it is best to get help from a professional. I couldn't do it, eating is hard enough without even more restrictions!

Hi Biking

I was diagnosed with Crohn's a couple of years ago.

Initially it was blood in my stools which alerted the GP to send me for an urgent colonoscopy (after treating me for suspected piles and given suppositories for a couple of weeks which didn't work, surprise surprise!)

I was initially diagnosed with UC immediately after colonoscopy but suspected Crohn's as there was inflammation in the terminal ileum. I was immediately prescribed medication and given an appointment for a number of weeks time to discuss biopsy results. The results concluded I had moderate IBD but had a follow up MRI which confirmed it was Crohn's. There were no polyps found during the colonoscopy. So yes, the MRI will be to confirm whether the terminal ileum has inflammation I suspect.

I've been on a wide range of drugs, currently now on the biologics and am seeing good results. I did have to follow the drug pathway until I reached the biologic route. What works for some doesn't for others. I had a couple of bad reactions to certain drugs and therefore the decision to start biologics was the next step for me.

It was quite a shock initially but I've accepted that this is just the way things are. I have a good IBD nurse who I can contact if I'm worried about anything. Even though resources in our gastroenterology dept are stretched I do now feel that I'm been well looked after, initially I felt I was given this diagnosis and then left to get on with it!

I don't think anyone can tell you exactly what will happen in your sons case but I would hazard a guess that they would possibly want to remove the polyps? I'm not sure but hopefully you'll get some answers soon and your son will be on the right path for him. If it is IBD there are lots of medications out there which can help.

Good luck. Let us know how he gets on.

THanks for sharing your experience, SM. DS also had pile treatment - he does have a pile though, but it’s good his current GP decided to look I agree we’ve probably got all the info that’s possible just now.

I‘ll have to deal with the guilt of yet another child getting an autoimmune condition due to my faultiness . I used to tell myself it was less likely as they are all boys. The youngest had a thyroid problem detected at 18. another has various allergies and food sensitivities. Oh well!

Hi BB

My GP was very apologetic when the piles she thought she saw weren't piles at all, no evidence during colonoscopy only the IBD diagnosis.

Don't feel guilty. As far as I'm aware neither of my parents had IBD or any form of autoimmune conditions. Could just be the luck of the draw.

Sounds like you're a wonderful support to your boys. Good luck for the upcoming MRI, hope you have a good IBD team.

Thanks! Yes, it is luck of the draw obviously - and my brother‘s sons seem to have missed this shebang. Just one of those things. Nice your GP apologised too.