Inflamed bowels

General
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Thought it better to start a new thread on this one. First thanks @Jen75, @a.laker28 and @Sybil for your lovely comments - they made me smile.

So I’m now out of the said simply lovely hospital. Been in private ones before in the UK but never this nice. Smiley competant staff, seriously lovely food, immense peace and quiet, consultant available every day over the weekend, nothing but nothing was too much trouble. It overlooks our NHS one and I looked out my window several times a day counting my lucky stars literally. It’s rather mean though because everyone in the NHS one can see this one too, provided they have a window to look out of, most wards don’t. In all senses of the word I feel ‘blessed’ for the lovely experience I had.

Anyway it was finally deemed the IV antibiotics were also then sending me to the loo, I made them wait a while between waking up and starting the next infusion since I ‘go’ usually shortly after waking up and Bob’s your uncle, I was right. So they were stopped and on that basis my lovely consultant had nothing to persuade my insurers of the necessity of keeping me there any longer. I did manage to wait until after a delicious lunch though.

But we’re still no further on really. Scans etc show very mild diverticulitis, certainly not enough to be the reason I’ve been so ill for the past 6 or 7 weeks. So in effect diverticular disease is ruled out. Scans show nothing else untoward either. Colonoscopy was due last week but I was deemed too ill to undergo it and it will be done later in January but he’s very not bothered about it and is simply going to do it to finish things off. Stool sample weeks ago was clear and present one is still cooking but not expected to show anything at all. All bloods are normal and no inflammation showing at all despite the fact my hip bursitis is raging.

So we’re back to PsA issues and whether a) it’s that that is causing this colitis and/or b) the Benepali and/or sulfaslazine that’s causing it. It seems both can. Thoughts please, evidence please, anything please. I think I need to sort of exclude one thing after the other as logically as possible. I’m due another Benepali injection tomorrow. I never stopped taking it for the previous 6 weeks either given half life and life issues, (which I’ve discussed on here previously) so I guess if I worsen after that I might have my answer, I did feel I worsened slightly last week but I was anyway in such a state then, I’m not really that sure.

Closing on a funny story though. This hospital as I’ve decribed was super nice, super posh and tres gentille. Within a couple of hours in there, I had blocked up not one but two different toilets to cringe-making proportions. We got over that, it was said I gave the engineers something useful to do. On Saturday evening my en-suite had run out of loo roll, but all the cleaning/maintenance staff had gone home with the keys to the toliet paper dispensers locked away, so the night nurse roared laughing as she handed me a bog standard loo roll to put on the side to use and told me it was God’s retribution mine would no longer be so nicely dispensed!

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Hi Poo, glad to hear the hospital experience was at least as pleasant as it could be! I totally understand the pain of running out of toilet paper :rofl::rofl:

IBD questions for you;

Do you need to wake up at night to go?
Have you had any low-grade (or high-grade) fevers, or night sweats (no fever needed)?
Any blood or coffee-ground looking things in stool?
Any mouth ulcers?
Any idea why they have suggested colitis and not crohn’s?
Have you had a stool test for Calprotectin?

And finally, have you tried steroids yet? Really, if they are sure there is no infection, that will tell you quick smart if it is gut inflammation. For IBD you need high doses (think 50-100mg per day tapering down to 20 over a week). Has a gastroenterologist mentioned this idea? Theoretically the calprotectin should show inflammation in the gut, but this is not foolproof - I was pretty ill (though not quite in hospital) when mine was raised, but below threshold, and the Rheum decided to (successfully) treat me for IBD as well.

So… if it were me I’d want to know if it is inflammation or not. You need to talk to a gastro about your options, but I’d be wanting to include in the conversation the calprotectin test (even if not on the NHS) and/or a course of steroids.

Once you know if it is or isn’t, you can then more likely address what is causing it.

A good resource (though designed for docs) on IBD in Australia is;
http://cart.gesa.org.au/membes/files/Resources/2018_IBD_Clinical_Update_May_update.pdf

Some extra notes are below but they are poorly structured, so read at your peril;

A quick look at the Benepali literature showed this;

Concurrent treatment with sulfasalazine
In a clinical study of adult patients who were receiving established doses of sulfasalazine, to which etanercept was added, patients in the combination group experienced a statistically significant decrease in mean white blood cell counts in comparison to groups treated with etanercept or sulfasalazine alone. The clinical significance of this interaction is unknown. Physicians should use caution when considering combination therapy with sulfasalazine.

As such, since sulfasalazine isn’t likely to suddenly fail if you stop it, and it has been suggested to be used with caution with Enbrel / Benepali, I would discuss stopping it as an option to see how it goes. I am puzzled though, sulfa can actually be used as a treatment for IBD (so it seems unlikely its a cause of inflammation in the gut? perhaps there’s some other sort of mechanism?), and since you’ve been taking it for a while, it also seems unlikely it has suddenly wreaked havoc with what seems to be described in the medication leaflet as nuisance diahrroea. Unless your docs had some other sort of explanation?

Which brings us back to the Benepali. Onset of IBD is not even listed as a side-effect in the literature, though due to my own experience, I have certainly read case-studies of the suspicion it caused IBD. As I understand it, because the IBD hasn’t been self-resolving, it’s pretty hard to make a direct link to Benepali / Enbrel (ie if you stop the drug, the IBD does not stop). But… if it is inflammation in the gut, steroids will address it, and Calprotectin should see it.

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Wow @Jen75 that’s a fabulous lot of information to be going on with. Are you sure you’re in the right profession? Thank you so much.

It allows me now to have truly competant conversations with both the rheumy and the gastro guy and searching questions which they have to answer. As whilst I am somewhat better I’m certainly not better enough by a long shot. My thoughts are to send a group email to them both and get them working even harder but together. I’m liking the idea of steroids too.

Yes it got/gets me up in the night, one night last week I was too late. That simply just made me cry long and hard. Trying to change bedlinen at 3.30am feeling like sh*t literally, with such gammy hips too was my very lowest point I think. It was that that helped me get the hospital admission. Last night it didn’t get me up though, the first night in quite some weeks.

Initially 6 weeks ago I had a temperature, with high BP (mine’s always low) which was why the GP sent me directly to A&E where the registrar eventually informed me ‘I no need operation, it was just muscle strain from being overweight’ (yes really) since then BP and temperature are normal.

Yes it makes me sweat and shiver and gives me goosebumps. I’m a ‘hot’ person anyway though.

Blood in stools but fresh probably from a ‘pile’, no ground coffee like stuff. No mouth ulcers thakfully. No idea why it’s collitis, Crohn’s hasn’t been mentioned. No stool test for Calprotectin as far as I’m aware.

Gastro guy is quite interested in the sulfasalazine issue - has me reducing it.

Thank you and now to the group email. But first I need some breakfast!

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I’ve simply no idea why some of that ended up in bold, capitals and a larger font size!

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Ugh, what a horrible experience!

I always made it at night time, though I went through a stage, when using a squat toilet in the jungle in Laos, of using gumboots to go to the loo :joy::joy::joy:

Ok, well the waking at night and night sweats and shakes are pretty strong indicators that it ain’t IBS, and is more likely inflammatory (they are some of the key markers for IBD) - though this can still be caused by an autoimmune response to an infection. Lack of mouth ulcers leans away from crohns, (but doesn’t exclude it), so perhaps that’s why they mentioned colitis.

I’m not sure what the UK gastros are like, but here the diagnosis for IBD basically requires a positive colonoscopy. Other things they can do include imaging (eg CT scan with barium swallow). Unfortunately the diagnostic process for IBD is often as long and torturous as for those with PsA.

Any chance you can discuss moving from Benepali to the NHS Humira biosimilar? Hang on, you’ve been on Humira already haven’t you? The others that work and are readily available here are Cimzia and Remicade. That’s worth a conversation too.

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Colonoscopy was postponed last week - he thought I was just too ill to do the prep for it, mind you I wasn’t eating and for certain my bowels were kinda empty all of the time, it kept making sure, over and over again! However that is to be done late January early Feb. He really wants to see if I go back to normal just now.

But I did have a scan with having to drink a load of water like substance and have the same substance IV-ed throughout the scan. It’s the one where you seriously think you’re wetting yourself but you’re not. A most peculiar experience. It was that night after it that I didn’t make the loo. The loo is literally adjacent to my bedroom too as in just a couple of feet away. I wonder if there’s a connection. Wish I could remember the name of the scan too, he’s not actually given me its name on his letter.

And no I haven’t yet gone on to Humira or its biosimilar. It’s my next one if Benepali fails which it doesn’t seem to be yet as in it got going a bit (except for hips) since October.

But thank you so much, you’ve truly given me so much more coherent info and indeed questions to ask. That helps. The good news is that today, I’m doing OK. Loo visits are certainly slowing down considerably. And I’m eating and wanting to eat. All that certainly helps along with the fact I persuaded my GP this morning to give me another steroid shot in my hip. Here’s hoping his aim is better than the rheumatologist’s in October. It’s being done this evening. :crossed_fingers::crossed_fingers::crossed_fingers:

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Hi poo, well you always make me laugh, glad you got your money’s worth out of the hospital in toilet roll and food at least!!

I know you don’t really want to stop the Benepali, but surely that’s going to be the only way to tell if that is causing it? I.e. Stop it, get better, Bob’s your uncle. Get a different biologic.

Plus I guess if PsA is causing it and you stop the Benepali and it doesn’t get better, you at least know the Benepali isn’t working.

Have no research or evidence except the side effects stated before on the patient leaflet about JIA patients taking Benepali developing IBD, sorry. In my warped head, any inflammatory disease could be linked?

I’m Andrea, by the way, and I still love cheese - St. Agur being my favourite :sunglasses:

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Any blue cheese is my favourite too. And I’m of the view we can usually find something that makes us smile even in the worst of circumstances, it’s simply sanity inducing in my view.

Don’t think your thoughts are warped, my thoughts are it is my autoimmune response which is causing this (as there’s simply no other cause) so one would think Benepali would be addressing that. Of course it can’t do that if it’s causing it on its own or causing it by being used with sulfasalazine and it’s the answers to either of those questions I need. Since both rheumy and now gastro-guru are now on leave for Christmas I don’t think I’ll get my answer though. I’m pushing other guys in Bath to tell me - we’ll see what transpires today. I’m not bad at being a determined thorn in a person’s side usually with a smile on my face at the same time.:rofl:

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Not sure that, that scenario applies as many JIA patients develop IBD whether or not they are taking Benepali.

Thats not warped at all. I can give you a long list of places inflammation shows up with PsA. I certainly have LOTS of experience in that area and I’m not an outlier by any stretch of imagination. Mostly for it has been heart, Urinary tract, some gut, lymph system inner ear etc. Though biologics and DMARDs supress the production of cytokines and leukocytes, it doesn’t stop it (we’d be dead in a week if they did) So while this production continues even in the absence of infection, they show up where they can… Balancing medications is the challenge. We want to suppress the immune system, but not to much. Only one doc should be doing this at any given time. Even when that doc is on the right tract, we tend to submarine the poor guy with dietary changes, supplements etc. I’ve even known folks to see naturapaths on the side whos universal answer seems to be BOOSTING the immune system in the hopes of returning it to normal - GOOD GRIEF. I mean how many of us have been sucked into adding: Vitamins B6, B12, C, D, E, folic acid, zinc, and selenium as well as other micronutirients into the mix? and how many of us “forget” to tell our docs??? Its nuts. And Sadly way too many Docs have decided not to get involved with supplementation knowing its a losing battle.

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Rheumatologist phoned me last night, we agreed to continue with Benepali, (and drop the sulfasalazine) so I took it. The effect on my bowels was pretty swift overnight. So I’m guessing it’s the culprit for the unholy mess that is my bowels presently. I had thought I felt worse last week taking it but I was in such a state I wasn’t sure. By yesterday I certainly wasn’t in the same state so throughout the night and this morning I’m pretty sure my bowels and Benepali just don’t get along. At least it feels like an answer now. So an email was fired off to the rheumatologist and I assume the biologic will be changed. Watch this space and let’s hope too it’s not going to continue as IBD too.

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Here’s hoping for you Poo

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I watch this space not to see what happens but because I can’t help but smile everytime I look at a "bowel discussion led by someone called POO, I can’t help but smile LOL. But seriously I hope you get the answers and treatment you are seeking.

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Yes it’s a serious case of divine retribution isn’t it? It makes me smile too and right now I need all the smiles I can get! That and some shares in loo rolls.

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I’m a bit far away, but FWIW my wife just had 2 truckloads TP come into her warehouse. Its specialty TP being water soluble for Detention facilities and scheduled for delivery to the state penitentiary next week. Its roughly 125,000 roles.

My daughter in Kansas has thousands of cases of JRT TP having the distributorship for the state. JRTs may be the answer if available. (JRT = Jumbo Roll Tissue) A roll of JRT has 1000 linear feet (its the same as 10 standard rolls) I think Tesco or Andrex makes it where you are at. At least you wan’t have to change the roll often…

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Too funny. I used to be able to buy jumbo rolls but they stopped making them…

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You’ve got to seriously hand it to Bath - next appointment on 2 Jan. Very impressed.

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Yep, they are on it, and good to hear for you too :+1:t3:

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I’m changing my mind though about it being Benepali causing my issues. Since the horrendous night after taking it, I’ve got better and better. I also stopped sulfasalazine at the same time, maybe just maybe it was that which the culprit all the time. Because if it was the Benepali I should not be getting better and better whilst it’s still so strong in my system. Whereas I believe sulfasalazine disappears quite a lot faster.

But to add more confusion to the issue, my GP gave me a steroid shot in my hip to yet again (the first day of no sulfasalazine and just after the Benepali) to try and bring this bursitis issue to more manageable proportions. So maybe the flooding of my system of steroids just helped anyway.

But possibly because of the steroid shot but also possibly due to no sulfasalazine I’m not quite so dizzy now and my tinnitus is decreasing. And I feel less sort of fuzzy.

Interesting isn’t it? And the GP’s aim was slightly better than the rhuemy’s one as regards my hips. Here’s hoping. Presently I’m celebrating day two of just no diarrhoea, since Sunday 4 November. That’s definitely worth celebrating in my view. My bathroom though has shedloads of loo rolls in it - it’s embarrassing…but at least they’ve got no ‘sell by’ date:joy:

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