Bowel bleeding / inflammation

[Joanna36]

I have loads of issues, EDS3, Ank Spondylitis and Sjogrens. I've started to develop heamorrhoids regularly but past few weeks have had horrific internal pain throughout abdomen and awful stools/ diaorrhea with lots of bleeding. Had a colonoscopy 8 weeks ago before this bleeding started and inside was absolutely fine and clear. Has come on quite suddenly. Stool test shows inflammation. Does anyone know whether there are other causes of intestinal inflammation with bloody stools that isn't chrons or colitis?

[misty14]

Hi Joanne

So sorry to read of your symptoms worsening, such a worry for you. Can I ask when you had the colonoscopy did they do biopsies?. I've got experience of IBD as diagnosed with colitis myself and mine came from the biopsies!. There are also different types of colitis that might fit you as you have inflammation in your stool it must be inflammatory bowel of some kind!. You must tell your GP soon at your changing symptoms. Have you an appt to see the Gadtro's again after the colonoscopy as they'll have the biopsy results?. Hope that's helpful and good luck with GP. X

[Barnclown]

I agree with misty...she has many years’ experience of this. Please tell your GP as soon as poss, now before christmas

My experience is 2 fold, and underlines how complex these sort of issues can be for patients like us with overlapping multisystem issues relating to immune dysfunction & connective tissue disorders:

On one hand, i have close family members living with severe early onset crohns disease for many decades of treatment including multiple major surgeries. In both cases, initial diagnosis took time and effort. Happily both cases are now doing very well all things considered...one is even in long-term remission.

On the other hand, i have been living with both extremely early onset bleeding prolapsing strangulated piles associated with inflammation, and also we now know i have abdominal inflammation due to visceral hyperreactivity caused by both hypermobility (Ehlers Danlos) and infant onset lupus + associated conditions (early onset sjogrens etc) + early onset Primary Immunodeficiency/CVID).

Am in multidiscipline care for this now: primarily with rheumatology + immunology + colorectal + gastroenterology clinics. And my GP & I keep very close on this...it’s taken a while for it all to be figured out (eg my colonoscopies have all been clear over the years, but my gastroscopies & biopsies have always revealed inflammatory conditions: oesophagitis, gastritis, duodenitis). But now we’re finally understanding my version of all this better and as a result treatments are becoming more effective plus my GI tract is tending to be more stable mouth to a**s than it has been in decades.

I am very lucky to be in the care of clinics at a major NHS university hospital...my smaller local NHS hospital simply hadn’t the expertise needed to figure all this out in patients with our sort of rare & unusual conditions. I’m now 64

So, please get in touch with your GP asap...i’m glad you posted...please let us know how you get on

🍀🍀🍀🍀 coco

[Hidden]

Jo I really hope you get something very useful from Misty and Barnclown’s replies - they are both real pro’s on the gut and IBD. X

[Claire133]

Hi there, sorry to hear you are suffering these symptoms. Just to say, intestinal inflammation, whether it be small intestines, colon or/and stomach, is a key symptom of Ankylosing Spondylitis, and you say you have AS! You need to go back and discuss it with your Rheumatologist. Its autoimmune so if you already have AS, Sjrogrens and Lupus and the inflammation is still there, you need your medication reviewed and changed, are you on corticosteroids?

I hope you get sorted and start to feel better soon. Best Wishes, Claire

[Lynvan]

I had a similar experience this summer , had a colonoscopy and was told I had diverticulitis. The pain get worse and was passing a lot of blood. Was sent to hospital by GP. Who suggested I should have a scan . Sent home with antibiotics and was told I had a bladder infection. The third time I was readdmitted to hospital was finally given a scan and was told. Had an abscess in the bowel and. Would need an operation. Fortunately the doctor suggested more antibiotics and this did the trick.

I suggest you go the hospital and get your problem sorted out without delay.

Best wishes to you and I hope I haven't frightened you to much.

[Joanna36]

Thankyou all for your replies! I have seen a gastro specialist who is familiar with EDS and sees alot of patients with intestinalnfailure and inflammatory bowel disease. Considering I'm put in the sticks I think he is a good person to see. He wants to do a sigmoidoscopy rather than another colonoscopy which I can't cope with tbh. He agrees that the bowel prep will be too much for me.

I've asked for a scan. I feel like this is some form of diverticulitis after reading up on it. I've had extreme pressure in my digestion for some time and explosive diarrhoea which is a big cause of that. Also been developing piles constantly that have been bleeding heavily. This isnt piles by the way, it's in addition to piles.

Gastro has agreed to an ultrasound. I hope this is enough to see inside and identify diverticulitis. We talked about ct with contrast but he is well aware of issues with reacting to gandolium when you have EDS.

Lynvan, my urine says UTI infection but I told G.P i did not have UTI symptoms so felt it connected to the bowel stuff instead. This would be in keeping with a diverticulitis from what I've read.

Can you let me know what scan you had to confirm your diagnosis. Am I right in thinking you can't get rid of the pouches that protrude the intestinal wall but you can do things to avoid them becoming inflamed and infected again - which has caused our symptoms?

Claire, I really suspected colitus as know this and chrons come often with A.S etc. It must came on rapidly with profuse bleeding after a totally clean colonoscopy 8 weeks ago which makes me question it. I also feel like my insides are being torn apart and I'm riddled with infection. I've got a pack of steroids. My rheum advises against it due to the fact it won't keep my problems abated once I stop. I agree with that concern. I've also got mycophenalate to start but sorry doing that without knowing cause of bowel problems and knowing that mmf couod make this worse. I cannot cope doing nothing though.

Barnclown, did you ever have scans to help with your bowel related diagnosis? Not long had colonoscopies and endoscope with biopsies taken. An eosophagal manometry revealed issues with sphincter pressure and the possibility of a hernia. This is what makes me think of burst vessels or diverticulitis more than an inflammatory bowel disease. But obviously I don't know for sure with all I have. How did they treat/ do they treat issues you've had such as gastritis or strangulation? I have reported constant feelings of internal strangulation in my upper abdomen all the way up to my throat regularly. Appreciate this may not be the same as the actual strangulation you are talking about within your digestion.

Thanks all for your helpful replies. Have more faith in this than most doctors.

The gastro can't do sigmoidoscopy until 3rd Jan. I've gone onto a mostly elemental liquid diet in the hope it may help in the interim. If the bleeding worsens I realise i will need to go to A and E.

[Hidden in reply to Joanna36]

Sounds like you’re doing all you possibly can Jo. I’ve just posted about this morning’s first gastro appointment. My problems are the opposite extreme but some of it might be relevant to you. My colonoscopy was clear apart from large bleeding haemorrhoids last year about 16 months ago. I don’t have bleeding often these days but some terrible flares of tummy pain lasting for weeks at a stretch. My new gastro said this is common with both autoimflammatory and autoimmune diseases like ours. Good luck over the festive break - hope you can avoid A&E. X

[Barnclown in reply to Joanna36]

Thanks v much for this update. I like the sound of your specialist v much

I will try to answer your question, and give more details of my version of all this...for what it’s worth...

The description you’re giving of strangulation sensations rings a bell big time with me...i’ve been managing my own version of this 24/7 for many many years. When my gastritis & oesophagitis are worse, the stranglation sensations are worse. Also when my slow transit small bowel bactetia overflow is worse, the strangulation sensations are worse. Likewise, i get a sensation in my upper body as it is being sort of pulled down into my midriff...hard to describe...but i gather this is all about intestinal obstruction & compaction. What confused me was that as well as slow transit evacuation problems, i had fecal overflow....So i was living with what seemed like constipation & diarrhea at the same time. Meanwhile other abdominal visceral hyperreactivity was affecting my gyn organs & uro tract. So, in my case this is abdo/visceral hyperreactivity. I won’t go into how urology + immunology & gyn + gyn onc are helping with their aspects unless you want me to. But i will just say: my overlapping multisystem issues are typical of immune dysfunction & connective tissue disorder (v early onset SLE, SS, PID etc + hEDS)

Over the decades, i have had a lot of imaging, endoscopies, motility tests: US, CT, MRI of upper & lower GI...gastroscopy, colonoscopy, sigmoidiposcopy, proctoscopy... colorectal has said: no need for colon transit tests because we know you have slow transit dysmotility. My crohns husband would like me to have barium swallow, but i hope to avoid this. My impression is that my multidiscipline team are confident with clinical diagnosis backed up by medical history + the imaging & endoscopies + biopsies & blood tests etc carried out to date + my positive response to treatments over the decades.

Eg after my haemorrhoidectomy in my 20s around 1985 (full on emergency surgery) i managed my hEDS slow transit dysmotility & food hypersensitivities via Low FODMAP elimination diet + anti inflammation diet...but over the decades i gradually had to exclude an awful lot of food types permanently, which isn’t a good sign. My diagnosed upper GI conditions were v early onset too (Childhood). Extremely conscientious lifestyle management has been key to coping. But from 50 I spent 6 years on daily prescrip PPI + domperidone which helped a lot but gave me a sort of diarrhoea...which may actually have been when fecal overflow first set in. finally my upper GI stabilised enough to cope via lifestyle stuff, so i now avoid PPIs . But meanwhile my lower GI manifestations continued to worsen

I sort of managed despite an increasingly strictly limited elimination diet until 2 years ago when several factors combined to cause a severe sudden onset persistent flare with 24/7 worsening of all my signs & symptoms, especially lower GI. By the time that flare set in, i had already benefitted from several years on rheumatology’s daily mycophenolate + pred which had both proven effective in somewhat damping down my lifelong typical persistent abdominal pain. Also immunology’s daily antibiotics had by then significantly damped down my gastritis & oesophagitis, which my consultants decided this was aggravated by slow transit small bowel bacteria overflow.

So when the persistent flare set in 2 years ago, we already had lots of GI evidence & diagnoses in hand...we just needed to be sure cancer, mesenteric vasculitis, colitis, crohns, diverticulitis etc weren’t involved (hence the endoscopies early in 2017)

A year into this current sudden severe onset flare, colorectal prescribed daily methylcellulose (the insoluble nonfermentable bulking agent celevac) + ultra low fibre diet (stopped eating even the few types of fruit & veg i had still been managing to eat...now only eat a little white rice, pasta, pealed potatoes, flour bakery items so long as not resistant starch) all of which seems related to hEDS hypersensitivity and possible Mast Cell Disorder. Meanwhile we discovered that higher dose daily pred (6.5-10mg instead of my maintenance dose of 5mg) also helped a lot...which indicates immune dysfunction-related inflammatory process involved. Am seeing rheumatology soon to look at increasing myco maintenance dose instead.

The whole picture is one of Intestinal insufficiency segueing into intestinal failure with pseudo obstruction. Our aim is to monitor my nutritional staus closely while trying to keep me on even this v restricted amount of solid food and see if we can avoid liquid feeding & enteral/parenteral feeding because my hypogammaglobulinemia G,A,M (PID, CVID) makes me v high risk of infections associated with these sort of feeding methods. I consider myself extremely lucky to be responding fairly well to treatment, and to be getting the sophisticated multidiscipline care i am

Apologies for going on at such length... but this subject is close to my heart...you’re v well informed & self aware...plus you have this good specialist on your side, which is great. clearly no 2 cases are alike...but perhaps something in the replies we’re all giving you can help. I hope so...and am wishing you every best wish...

Sorry, again, but am feeling v concerned about your bleeding: if i were you, i’d be seeing a doctor about this before christmas

🍀😘🍀😘🍀😘 coco

Ps apologies for typos....and for not being concise ....am tapping this is v late at night.

[Hidden]

Hi Jo,

Was it a faecal calprotectin test that was positive for inflamation?

Diverticulitis can take years to develop but inflamation in the bowel ( colitis etc ) can come on very acutely.

As far as I am aware scans of the bowel aren't nearly as good as colonoscopy etc which gives a direct view of the bowel mucosa. Have you ever had a capsule endoscopy as it's very good for imaging the small bowel and other parts that colonoscopy etc can't reach?

[Joanna36]

Hi Keyes, sorry for the delay! I've been pretty poorly. So apparently was a fecal calprotectin test and that showed raised levels. The bleeding carries in and I'm in mostly liquid diet. The pressure build up when I go to the toilet is pretty extreme and I'm getting such strong contractions when I go, it feels like labour. Horrible.

I have a sigmoid colonoscopy next week. Couldn't handle a full on one with the bowel prep. Having ultrasound as well. Think I'd happily have camera pill. Have had one years ago but I bow have swallowing trouble and such bad dryness I'm worried it would get stuck.

[Joanna36]

I've just had my sigmoid colonoscopy and it has confirmed I have ulcerative colitis. It is never ending how sick I'm getting. Scope 8 to 10 weeks ago totally clear and then suddenly this. I did start hydroxy around the time this started, which may be coincidental. I stopped that just over 2 weeks ago. I have a prescription of cellcept to start but keep reading how bad this is for gi issues and how it has triggered colitis for some. I'm prescribed pentasa for the colitis inflammation. Anyone with Inflammatory Bowel Disease also take cellcept?

[misty14 in reply to Joanna36]

Hi Joanna

So sorry to read you have ulcerative colitis. Mine was diagnosed out of the blue just like you seven years ago.It is a horrible shock!. Pentasa is very effective for the symptoms and has added bonus of being aspirin based so provide extra protection against nasties!. I was on cellcept too and what needs watching with it is in some people it can cause diorrhea when first taken. This should wear off very quickly once your body is used to it if it happens to you!. It may not as it didn't happen to me. Cellcept is a very well tolerated drug and works well so hopefully taking both these treatments you will soon be better!. You'll also get regular follow ups with the Gadtro's to see how your doing !. It' seems overwhelming to add more drugs and specialists to what we already cope with!. If there's anything you want to ask me about it please do anytime. I hope you feel better soon. Take careX

[Hidden in reply to Joanna36]

Oh no poor you! However at least you now know what is wrong and hopefully, as Misty has experienced, it can be brought under control.

It is bizarre to me that your colonoscopy was clear so recently - proving how fast new autoimmunity can spring up and wreak havoc.

As you know I’m on max dose of Mycophenolate and I do have GI problems, assumed to be dysmotility as part of my autonomic dysfunction, which pre-dated starting the MMF a year ago. They haven’t got greatly worse.

I did experienced a few days of diarrhoea when I first started - but for me this was actually quite a welcome a novelty as it meant I could have some respite from my maximal doses of daily laxatives.

I’m to have a barium enema and barium swallow next to check my issues are neurogenic rather than dryness or IBS-c.

If I don’t take my daily laxatives (liquid Senna and Laxido) then I don’t have pain at all or flatulance or anything at all. I just grow bigger and bigger until I look and feel heavily pregnant.

The laxatives cause me much abdominal pain a lot of the time - even after they have worked. But I know they are a necessary evil. I’m glad i don’t have IBD though - I’ll count my blessings for this at least.

My old pharmacist had UC and some sort of autoimmune respiratory problem and secondary RA. She has found injectable Methotrexate very effective for all of her problems. Xx