Crohn's - feeling better at last!

[MollyHuaCha]

A little update on me, for anyone who has read my previous feeling sorry for myself threads and for anyone who has written replies...

After a miserable six months of Crohn's symptoms, I am at last feeling so much better! No surgery this time, just a ton of medicine and a few tweaks to my diet.

Thanks so much to all you MNers who have supported me and got me through it. Your kindness and empathy mean a lot to me. You are great!

Molly. So glad to hear this and hope it continues to improve

Molly. So glad to hear this and hope it continues to improve

Thanks Ottiva. I know you're suffering at the moment. If possible, take it easy and give yourself time to get better. Crohn's is certainly a miserable condition, but it's so lovely when you get times of good health.

I look forward to seeing your 'I'm feeling better now' post too x

Hi Molly, glad you're feeling better. I haven't seen your previous posts but when I saw this thread I wondered if you could share any tips you have. My dh had emergency surgery in January to remove his bowel. He has since been diagnosed with crohn's. He is struggling with the fact that no one really knows what causes it so can't advise on what to avoid to stop any flare ups. He is very anxious about another hospital stay so basically eats the same 'safe' foods. He's thinking of going gluten free. Any tips you can give?

Hi Peachsploosh, so sorry to hear about yr DH's illness. I was 17 when I first developed Crohn's, so I've lived with this all my adult life, which I actually think is easier than being diagnosed in your 20s, 30s, 40s etc.

Ok, my only medical qualification is a first aid badge from the girl guides, so I can't give any advice (too much responsibility!). But through a lot of trial and error, I have found that these things work for me:

1. Lots of sleep and moderate exercise.

1. Be meticulous about taking medicines on time. Carry spares in case you can't get home or something.

1. Keep all appointments, even when you are well. Every now and then ask whether new treatments are available.

1. Accept that the condition has times of flare and times of remission. During the flare ups you need to do things differently and maybe just rest completely.

1. For me, this rather boring and extremely anti-social diet is working at the moment: bland food, not much variety - I have a low-ish fibre diet: rice, baked fish (no batter/breadcrumbs), potatoes, steamed carrots, lettuce, cucumber, bananas, peeled apples, berries, non-dairy milk/yoghurt, small amounts of kefir daily for the probiotics, eggs, porridge, home made soup.

No onion, garlic, broccoli or similar, no spicy food, no fibrous food, no fast food/take-aways, no buffet food at parties/restaurants, minimal alcohol (fewer than 10 drinks a year!). Minimal meat/poultry (it's ok for me to use chicken stock, but I struggle with chunks of meat).

1. I have been dairy free (apart from kefir) for decades and I have been gluten free for 4 years. And I try not to have too much sugar.

1. I have found fasting beneficial -several weeks of 16:8 really helped me recently (In fact I often did 18:6).

1. Stay hydrated with lots of drinks. Herbal teas are soothing if he likes them.

I think any dietary changes should be made slowly. I hope he feels much better soon.

That's really helpful, thank you for taking the time to reply.
It's interesting to read the healthy things you're eating as dh is avoiding all fruit & veg at the moment. I guess the difference is he now has a bag & is concerned that some foods can cause a blockage.
A lot of the problem is mental for him. Early days I guess. I'm encouraging some mindfulness & relaxation. I think he needs to try to lose some of the anxiety over a flare up & then look at his diet.
Thanks again for your help. I hope your remission period is a nice long one!

I wish him (and you) lots of times of good health too. Your DH's situation is different from mine as I don't have a stoma. He needs to work out what suits him. His list of foods to avoid could change a lot depending on whether he's feeling unwell or in remission.

I've thought of one more thing that helps/doesn't help me, and that's when well-meaning other people suggest it's a psychosomatic condition. The amount of times I've had to grit teeth, politely smile, resist the urge to thump, when non-Crohn's people have said things along the lines of 'Oh, you have this because you're uptight, you need to relax more!' and 'It's all in the mind - if you could only be more positive...'

You sound like a lovely caring person - pls keep such well- wishers away from your DH. Have a good day! Molly x

Peach I would advise your DH to not be afraid to have a go at most foods, over time, and see what happens. I found for instance that any fizzy drink (even water) was in the bag within 5 mins, peas came our whole, but steak went through just fine (which was a bonus as I hadn't been able to eat it for years before the stoma!)

They say to avoid salad, popcorn and a variety of other foods. I never had a blockage with any, but some caused bag blowouts more than others.

Hope that your DH may be eligible for a stoma reversal? I was lucky to be suitable and had it done two years ago now, but would be ok with another bag if necessary. Just takes time to get to know the little fella!

Wise words from gobbin.

Thanks Gobbin. He's a teacher so feels ready to try some different things now it's summer holidays. He was worried about needing more time off if he had a flare up as he had a full term off with the operation.
He's been told not to have a reversal as then it could come back in the same place. The consultant told him reversals were for ulcerative colitis patients. Not sure what is right to be honest as we were away from home when he got sick so had the surgery away from our area & when we got home he has struggled to get seen. Had his first appointment 7 months after the surgery!

Hmmm... no stoma reversals for Crohn's patients? That doesn't sound right to me?? If your DH would like to be considered for a reversal, I'd be inclined to press for a second opinion.

It is strange because in the hospital they said it would be possible when he felt up to it. It's not something he's considering at the moment so it maybe he just heard what he wanted to hear for now. He's managing the stoma quite well, it's more the anxiety of another long hospital stay that stops him trying anything.

I'm really pleased to hear you are feeling human again Molly, well done! ♥️

Hi Buster, thanks for your kind words. I hope you are feeling ok at the moment too.

I'm ok. I've just moved country and am back in the uk! I'm going to email my doctor and hopefully get some kind of medication or see a dietician!
Things can only get better for me now!

Peach I have Crohns and a reversed stoma, but appreciate that every post-op bowel is different.

There was active disease in the resection site within 4 months of my reversal but that was because I'd had no medication in that time. Am now on Humira and the most well I've been for 20 yrs. Your DH should definitely keep pushing for a second opinion.

As an aside, the reversal op is much easier in terms of recovery and I would've been out within 5 days if I hadn't had complications. (All the old ladies around me were out long before me 😂)

Buster, enjoy your time back in good ol' Blighty! I returned from abroad to the UK in recent months. I still really appreciate the fresh air, drinkable tap water and excellent food choice and quality - all things I took for granted before I moved away several years before.

Peach, yes as Gobbin says, I believe for a stoma reversal the recovery is usually quick and simple, though I haven't had experience myself. Hope yr DH is able to have a rest during the sch summer hols.

OP! I'm a fellow sufferer and I don't know if anyone's mentioned the FODMAP eating system? There's small changes easily incorporated. Every little helps.

Peach (fellow Crohn's patient here) I think maybe what they mean is that there can be a tendency with Crohn's for inflammation to develop wherever there is trauma to the gut, so that could apply to an operation site. I've never had a stoma or resection for my disease but surgeons did mention the possibility of a 'temporary' stoma last year, to give my gut a chance to heal... the stoma would have been left in place for 6 months or so then reversed... so it is obviously possible in some cases. Worth asking again! Good luck x

Oh and just seen gobbins post too!

Hi I have Crohns on the last flare I had a foot of bowel taken out and a temporary stoma I had for about 9 months before reversal. I am on azathioprine now and except for having to hog the loo in the mornings mostly I am perfectly fine (at the moment). This was 8 years ago. I eat everything though i have to be more careful on days out as i have a fear of where available toilets are but live a pretty normal life with this desease. All the best to fellow sufferers.

Molly I missed your previous thread but I'm so pleased you are better I know what a hard painful road that is big hugs to you.

Thanks user. Wishing you well too.