Is this a bowel stricture or ulcers?

[MollyHuaCha]

Soooo fed up with crohns... bleugh! I'd value anyone's opinion on this .

I'm having bowel blockages, constipation, massive bloating with near permanent low level abdominal pain. Plagues me by day. Wakes me up at night. Can't get away from it.

When I eventually manage to open bowels sometimes I'm bleeding and the pain increases a lot - lower right side abdomen, lower left side, lower central and also higher near naval. I don't have piles or anal fissures. Current blood tests results are good - no active inflammation (whoopy doo!).

My IBD nursing team know, and I'm waiting to see consultant in three weeks time. Would have preferred earlier appointment, but none available .

Scared I'm going to get a blockage that doesn't clear, don't know whether this is ulceration, strictures or something else, feeling so rubbish these days...

If it was ulceration, wouldn't your ESR would be raised? (Yeah, I know it doesn't always work like that ).

Sorry you're feeling so rough. Crohn's is truly a pain in the arse.

My ESR is never raised but my calprotectin levels can be through the roof. Have they done a fecal calprotectin test? Or can you ask in advance so they can arrange one before your consultant appointment?

Thanks for your replies - really appreciated.

Shadowfax that's kind of what I have been thinking. I guess a stricture wouldn't affect blood results though?

MrsPnut it's a good idea. I might do this.

How are you doing, Molly? I've never had a structure, so I couldn't tell you anything about them.

Aww, thanks Shadow, I'm really touched that you asked. I don't know how I am really...

Sometimes I feel ok and I think 'Yay!I'm getting it all under control', others I feel so lousy and I think this misery will never ever end.

Not sleeping properly is exhausting, and I seem to have most of my pain at night and in the mornings. I don't know how to eat - low fibre to reduce bulk in the bowel, or higher fibre to try to avoid blockages?

I'm (foolishly) hoping for some sort of miracle cure when I see my consultant in a couple of weeks' time.

Do you have Crohn's? How are you getting on?

Hiya Molly I've never had a stricture either but have had a bout of flares when I have literally felt like I'm about to give birth (bowel contractions).It's so awful when you flare! I eat low fiber most of the time. I steer clear of the usual aggravators such as salad, pop corn, whole grains, broccoli and chilies.

lol, I'd serve you jacket potato minis the skin, with a tin of tuna on top and some carrots!

Raw onion gives me wind!
I live off potatoes, rice, pasta, mince beef, chicken, tuna, carrots, occasionally sweet corn, pasta sauces, pesto, cheese, bread, toast and jam.
When I first realized I had a problem it was ALWAYS when I had started a strict diet and had had salad for lunch. Jeez, I'd rather have a round belly than suffer the onslaught of contractions after eating that shite again! 😂

Banana and apples are good too!

Yes I have Crohn's, mine isn't particularly severe, but I am probably due a flare. I'm also allergic to sulfasalazine, which makes life interesting for the consultants. At the moment I'm on colpermin, and control the Crohn's with that and diet. I appreciate that this approach won't suit the majority of Crohnies, but I'm 20 years after diagnosis, so I've had a while to figure out what works for my body.

When it does start flaring, I always immediately go low fibre, low fat and bland, and try to drink extra water. I second the bananas too, but you can get sick of them. My triggers are onions, peppers and tomatoes, but lettuce, peaches and Christmas cake can also cause me problems. The Christmas cake took a while to figure out, but religious use of a food diary for a few years helped.

I'd do you a chicken and asparagus risotto, btw, Molly.

Posted too soon, I'd follow the risotto with a banana and raspberry sorbet.

Interesting, a few similarities here... tomatoes, peppers, onions - I can't eat any of them either. Bananas - I have one every day. And despite adoring fruit, I can't eat peaches and nectarines either. I normally love simple salads (just lettuce, cuc, cress, radish), but when I'm flaring, for some reason I go off salad.

I'll def invite myself to dinner chez Buster and chez Shadow because just thought of your tuna potato, risotto and sorbet make my insides nod agreeably and say 'Yup, we won't complain if you eat those Molly'.

In case it helps you guys, let me share my favourite tea recipe:
Infuse matchstick strips of peeled ginger and slices of lime in boiling water. Err... actually that's it! Sounds like a faff, but actually takes less than a minute - I slice the ginger and lime whilst the kettle boils, pop them in a pot, add the water and infuse for five mins.

Oh Molly that tea sounds lovely, the nicest drunk I've had is a milky ginger combo, it was from a Karak tea place. It was hot milk with ginger and spices. I loved it. I do love warm milk in general, especially on certain cereals. For pudding at mine we'd have Angel Delight with sliced banana on top!

That tea sounds lovely, Molly, I'll have to try it.

Hi Molly, I have a large number of strictures and it sounds very similar to my pain and experience. I hate Crohns too! My inflammation levels are never raised despite surgery showing definitely active inflammation.

My situation is dire. I haven't been able to eat for 3 years now - modulen only. Op too big to do as too risky, stuck in limbo. It's cr*p. I am totally fed up with the situation now, despite being a fighter!

Looking at the date of your post I'm guessing you've seen consultant now? Let us know how you got on. It's be good to chat :-)

Hi Starry, thanks for your kind words. Wishing you well with your Crohn's.

I spent aaaaages with consultant, much more then my five minute allocation. He has increased some of my medication, and then left me with a typical NHS 'see how you get on' approach.

He said to eat less fibre, but I don't eat a lot anyway. I can't have Ensure meal replacements etc. as they are milk based. Years ago I was on an elemental diet (bleugh), but it's really expensive and I guess it's no longer an option. He thinks I have strictures, but declined to do a colonoscopy because I had one two years ago. Does all this sound like the right approach? The cynic in me couldn't help feeling there is a touch of trying not to spend too much valuable NHS money...?

Molly it does sound like you have a stricture. I have Crohns as well & had 2 massive flares in 2 years which resulted in a stricture. I had a resection 2 years ago as my bowel was so badly blocked I couldn't eat solid food without vomiting constantly. Mine was diagnosed after a barium meal which showed massive swelling in the part of the bowel before the narrowing. Medication didn't help so I finally agreed to surgery. I can honestly say it was the best thing I've ever done - I was in hospital 6 days & was fully recovered after 3 months. I'm now in remission and have been for over 2 years. I couldn't have a colonoscopy as they couldn't get the scope far enough due to the stricture. I also had a CT scan which showed the extent of the damage. I'm not sure medication can reverse a stricture & like you I'm also cynical that your dr is trying not to spend money. Do you have an IBD nurse? Maybe have a chat to them & see if they can recommend anything. Good luck, hope you feel better soon x

Thanks fireandicecubes, I appreciate your reply. Glad you are in remission! Was your surgery a resection or did you have a colostomy?

I had a resection, was told before that there was a 50% chance of a temporary stoma. I stayed on a Modulen only diet for 4 weeks before the op & the swelling had gone down enough for the surgeon to be able to reconnect. I wasn't worried about the bag but I was scared of further surgery to reverse it. My surgeon was brilliant & kept me informed all the way through. I now have my bloods done every 3 months (I'm still on the minimum dose of Mercaptopurine) & I see my gastro consultant every year. The best part is I don't struggle with food now although I am still wary of certain things x

Great it has worked for you. I wish you all the best for continued good health. Thanks for posting