ongoing health issues

[Runrig01]

As many of you know, I had foot surgery 4 weeks ago. Unfortunately, the wound isn’t healing well, so I’m now 6 weeks off my MTX and benepali.

On Sunday at 1am I went to the loo before settling for the night. I had a large rectal bleed, with maroon stools and a gush of blood. Hubby was asleep, so I checked blood pressure etc ok, and hoped it was a one off and I’d speak to Drs in the morning. At 8am unfortunately I had a repeat episode, and 111 sent me to hospital. I had bloods taken, which showed my electrolytes were deranged, and a lactate of 3.5, which was concerning, as well as being dehydrated. I was given a litre of plasmalyte, then seen the surgical reg. Unsure what’s causing it, but need to have an urgent colonoscopy. I have ankylosing spondylitis, and inflammatory bowel disease is very common alongside it. I’m wondering if being off my immunosuppressants so long, has possibly unmasked IBD. I was a nurse so used to seeing patients with rectal bleeds, this was considerably large with it gushing out for around 10 secs each time. Had hoped that 2024 would be better health wise, after 6 months of hell last year with my knee injury and wounds not healing. No sign of restarting meds yet, as wound still not healed. Has anyone else had bowel issues, whilst being off immunosuppressants

[medway-lady]

Oh gosh I’m so sorry to read this, how frightening it must be. I hope the colonoscopy shows something simple and treatable. All best wishes and fingers crossed and prayers that it’s nothing sinister. Xx

[Runrig01 in reply to medway-lady]

I’m pretty sure it’s just inflammatory, from withholding my immunosuppressants so long. As everything has been normal until then, and no unintended weight loss. Apparently 60% of AS patients have sub clinical IBD, so have probably just unmasked it. Thanks for your kind thoughts. It was quite alarming the amount I passed 🤗

[medway-lady in reply to Runrig01]

I get blood in urine always positive for a UTI and after a lot of antibiotics saw a urologist. He said do a cystoscopy and nothing wrong at all. I photographed the blood as was alarmed but no other symptoms except seems linked to biologic medication. Urologist contacted manufacturer and no record of blood but as I have CKD could the blood be from higher up. I turned down the MRI as after talking to Nephrologist who said it could be kidney but a few drop etc etc. He was right and I trust him, he told me if I wanted a MRI renal hospital would do it and I can't have contrast CT scan. It's now been over 2 years, blood every week or so but no illness and I still take the Hiprex. I dont know if it helps but blood from anywhere is really scary. I also take Riveroxaban so that can't help, but its risk v benefit so as a nurse you'll know that sometimes there is no actual answer it just happens. I'm now not scared as I did the blood in a bowl experiment. When I cut my finger I just dipped it in a bowl of water and bingo it went pink. That was my Nephrologists idea and put it into perspective. But that's not at all like your loss and I read that and thought crikey that sounds nasty. I really do have to say that I really pray it's not sinister as I even had to go to the County Cancer Care Centre for a special fresh urine test for cancer. No evidence whatsoever so from then on it was such a relief. xx

[Runrig01 in reply to medway-lady]

Sorry to hear you’ve had similar. I keep urine dipsticks at home, as I often get the burning feeling of a uti. It often coincides with pelvic feeling inflamed. I often get loads of leucocytes, if it’s just that I put it down to inflammation. I’m on clopidogrel since I had the stroke which doesn’t help. Take care x 🤗

[medway-lady in reply to Runrig01]

And good luck with this latest blip. Its just not fair sometimes !!

[Intheend]

So very sorry to read this… do hope you get the care you deserve x

[Gottarelax]

Oh my, that sounds so scary! I hope that your colonoscopy reveals nothing sinister but gets to the bottom of it (if you'll excuse the pun). Take care, my thoughts and prayers are with you.

[Fruitandnutcase]

What a horrible experience - I can’t help at all with your question but I’m sending you my very best wishes and hope you get this sorted out asap. What a horrible t8me you’re having 💐

[Bethany02]

Ulcerative colitis? Because your off your immunosuppressants I had a small wound self inflicted not healing I got some tamanu balm seems to be helping unsure how bad your wound is if you would want to use something like that ?

[Runrig01 in reply to Bethany02]

You’re the first person I’ve heard using Tamanu balm. My boss recommended it a few year ago. It’s excellent for healing wounds and dealing with bites etc. I also use it on dry patches. Unfortunately the wounds are quite sloughy, and quite a mess, so don’t think it’s quite at the point I could use it. Will certainly try when it improves a bit. At the moment they’re using silver impregnated aqualcel, rather than the standard aquacel, so hoping on Monday to see an improvement.

I do wonder if it’s ulcerative colitis from being off my meds. They say 10% of AS patients have IBD, and that rises to 60% have subclinical inflammation. I developed lactose intolerance at the same time as going into a severe flare, although at the time was not diagnosed with AS, just polymyalgia. I was later told by the rheumatologist that diagnosed me, that inflammation in the bowel, had probably triggered the lactose intolerance. Just on tender hooks, hoping it doesn’t happen again whilst waiting for the colonoscopy. Thanks for your kind thoughts, take care 🤗

[Bethany02 in reply to Runrig01]

Hope it all works out for you x

[Hidden in reply to Runrig01]

So sorry to hear this , and I wish you all the best and an accurate diagnosis.It is hard to add anything helpful as you have a excellent medical knowledge. Much better than me . All I can add is something from my experience. I had an open wound on my leg, and needed a silver dressings at the hospital several times a week. Eventually it healed but it did take months. Hopefully, your colonoscopy will find the problem. I have RA and bowel problems and am now on benepali. I was on sulphasalazine for about 20 years. I also have tinnitus which I ignore. It is so hard to know if the cause of my non RA problems is a result of medication or my condition. I was told my bowel problems were IBS.In 2014 gas, d, pain was so prolonged and severe that eventually I was suspected with SIBO and given antibiotics. Antibiotics helped to some degree.I developed temporary lactose intolerance due to the hairs on the villi of the small intestine being erroded. After giving up milk and most dairy for about 4 months , I was able to gradually reintroduce it. The SIBO left me with a tortuous colon and severe c. I now have a large gall stone, with symptoms, and have occasional painful attacks in the upper GI . Not sure if it is my gall stones or pancreas or both but will be glad when my date for surgery arrives and hopefully further tests. In my experience, I struggle to get an accurate diagnosis and extended testing. If one test shows negative they don't seem to keep testing using further tests to identify the problem. I have to keep going back to ask for more. Since the label SIBO, my bowel has been a big problem for me. I do hope you get the best medical testing, support and treatment which seems hard to get today. Good luck. All the best.

[Runrig01 in reply to Hidden]

I’ve had lactose intolerance since 2011, it appeared at the same time as the flare in pains, that led to a long journey with rheumatology. I have noticed in the last month, whilst being off meds, that it is worse. I can normally tolerate a small amount of dairy in main meals, as long as I take a lactase capsule. However recently every time I eat, I’m rushing to the loo. It’s been good in that I’ve lost 10lbs, as not absorbing things. I put it down to being of the meds.

I’m sorry you’ve struggled to get answers re your bowel, it’s so unfair. Hopefully you will hear soon re your gallbladder surgery.

I had terrible issues last summer, when I injured my knee whilst on holiday from doing too much. My knee was buckling, and resulted in me falling in the shower and gashing my leg. When I seen Drs they were more concerned re my spine and pelvis, yet my knee pain was 8/10. After 2 months it was so severe I was bedbound and gp sent an ambulance to take me to A&E, where the Dr said it was unstable and needed urgent mri in the morning. Needless to say that didn’t happen so was sent home to wait “a day or 2”. Ended up being 10 days, and went straight back to A&E as instructed for results. Seen a different dr, who said I had severe OA, but my rheumatologist would discuss the other findings. He wouldn’t without a report which took 6 weeks, involving PALs. That showed my kneecap was subluxed, I had severe OA with an effusion on the knee, as well as bursitis in 2 of the bursa and patella tendinitis. I was referred to surgeons who don’t want to do anything due to my age, and adrenal insufficiency making surgery higher risk. Astonishingly the first treatment I had for all this was 7 month after the injury when I seen physio. My gp was useless, constantly telling me the knee pain was coming from my spine, despite never examining my knee. It was 2 month after the injury before it was properly examined. Sorry for going off on a rant. I do find Drs these days have tunnel vision, they home in on one word or symptom. As a result of this neglect, my patella tendon has shortened, and I now get severe spasms from mid shin to mid thigh, when I walk too much or lie flat where the tendon is being stretched.

Fingers crossed you hear soon re your surgery. Apologies for getting on my soap box and ranting 😂🤗

[Bethany02 in reply to Runrig01]

Have you tried polymem?

[Runrig01 in reply to Bethany02]

I haven’t. I wasn’t familiar with it, but reading it does sound like it would help. I’d be surprised if they stock it at the hospital clinic I attend, but will certainly ask. Thanks for the info 👍

[Bethany02 in reply to Runrig01]

amazon.co.uk/Polymem-Non-Ad...

[nanny_bee71]

wishing you a speedy recovery - must be a worry - hope the colonoscopy comes up with some answers for you

[ABwn]

Sorry to hear about your blood loss. I haven't experienced it, but anything like that in the middle of the night always seems worse. Take care, hope all goes well. x

[Hightower62]

Sorry to hear you’re going through this, sending you best wishes & positive thoughts.

[janmary]

so sorry to hear about this latest problem and hope you can soon be reassured and have your usual meds restored

[Monkeysmum]

So sorry to read this Maureen, what an awful experience for you. I’m not sure I could have remained as calm as you did in the middle of the night, I think my hubby would have been woken 😅. Some kind of inflammatory bowel condition does sound likely - I guess to try to look on the positive side, if it is then you know the Benepali and methotrexate has been controlling it, so hopefully should subside once you can go back on them? As you are a nurse, this is probably teaching my granny to suck eggs, but just thought I would mention that when I had an ulcer on my toe from Raynauds that wouldn’t heal a few years ago, using a honey ointment seemed to turn it around eventually. Sending you a big hug this morning, keep us posted won’t you. 🤗

[Runrig01 in reply to Monkeysmum]

Thanks for your thoughts. I actually have honey ointment as well as dressings impregnated with honey. At the moment it’s being dressed by the hospital, they’re not keen on dressings not supplied by them. However if it’s eventually handed over to me or the gp nurses, honey is on my list.

If it’s found to be inflammatory in the bowel, I suspect I’d have up switch biologic, as benepali doesn’t help bowel inflammation, and some articles suggest it can trigger it. I do think the MTX will certainly calm things down though. Just hope I’m not waiting too long for colonoscopy. I’m complicated as I have adrenal insufficiency, and diarrhoea can trigger a crisis, so I’m supposed to be prepped in hospital with IV steroids and fluids. Given the constant bed pressures I can see that being a challenge. Will keep my fingers crossed, that it doesn’t result in delays 🤞🤗

[Monkeysmum in reply to Runrig01]

Oh gosh, you really do have to think about everything with the adrenal insufficiency. You’re not complicated, you’re special 😜 Fingers crossed this end too. X

[Runrig01 in reply to Monkeysmum]

😂😂

They just called and already were aware of the adrenal insufficiency and the need to be admitted the day before, for IV steroids and fluids. Even getting in an argument can trigger low cortisol symptoms, as unlike most people my body doesn’t produce more cortisol to deal with the stress. I go in on 27th and have procedure on the 28th, so can still enjoy hubby’s birthday on the 25th with family 🤪👍

[5lupins in reply to Runrig01]

I recognised your name from the gca/pmr site from years ago. I still take 10 mg of methotrexate and 2.5 of prednisolone. I have also had one teaspoon of manuka honey daily and wonder if it helps with uti and wound healing. I do not want to risk stopping it just in case……. Warm wishes. 🌸

[Runrig01 in reply to 5lupins]

Yes, that’s going back a while, 2013. Unfortunately due to the years on steroids for the polymyalgia and GCA, I developed severe adrenal insufficiency. It resulted in me having a severe stroke at age 52, due to an adrenal crisis, which is how I was diagnosed with adrenal insufficiency. Im on steroids for life now, as my adrenals are 90% atrophied, I’m also still on methotrexate 25mg as well as a biologic. However I’ve been off my immunosuppressants 8 weeks, due to foot surgery, and wound not healing. That seems to have unmasked inflammatory bowel disease, I had a rectal bleed 2 weeks ago, losing 500ml of blood. I’m going in on Wednesday for an urgent colonoscopy. Seems never ending. Hope your doing better 🤗

[Kati66]

Oh that does sound scary!! Seeing blood come out from places it shouldn’t is worrying. I hope your foot starts to heal soon and the docs find out the cause of the blood loss. 🤞🏻🤞🏻

Hugs, Kati

[sunshineday]

So sorry about what you're going through now on top of everything else. I hope your colonoscopy is reassuring about what's happening. My hubby has several health problems, all autoimmune, with some starting from a few months old. It seems with so many on health unlocked if you have one autoimmune illness a cluster follow. Thinking of you and hoping all your health problems improve and that despite the start to the year that 2024 is a better year than last🙏 xxJoy

[StormySeas]

Oh heck you poor thing, I hope the colonoscopy happens soon and you get it sorted. Mega impressed with your calm approach X

[WilfDog]

So sorry for your scary experience. I didn't know having AS could cause Inflammatory Bowel Disease. I have stopped my biologics on occasion due to various issues but haven't had that reaction. I'm due to stop them again for a shoulder replacement op. I hope you get sorted out really soon and you can return to your biologics. Thoughts are with you Xx

[Runrig01 in reply to WilfDog]

Sorry, I don’t mean to scare you. I’ve stopped my meds for several weeks in the past, and had no issues, other than pain increasing. I even missed 14 out of 16 in the winter of 2017 without issue. That was from picking infection after infection off my patients. I had chest infections followed by laryngitis for 9-10 weeks. I’ve seen ENT who have blamed my AS on inflamed sinuses and larynx, which they say is inflammation filtering out from the jaw, which I had been having a lot of issues with. Apparently 60% of AS patients have sub clinical IBD, and 7% symptomatic. Here’s a bit from Nass about it. I was diagnosed with AS by one of the medical advisers associated with Nass, she said I had a potentially aggressive form of AS. I have most joints in the body affected, which is why I’m in MTX, the benepali helps the spinal symptoms. My ribs and SI joints were already fused at diagnosis.

nass.co.uk/about-as/what-is...

[WilfDog in reply to Runrig01]

Thanks so much for this. You haven't scared me. This is really informative. I've had sJIA for over 50 years and most of my joints are severely damaged having many hip replacements and other ops. I was diagnosed with AS in 2021. I'm on steroids and etanercept, but over the last 12 months my bowels have behaved differently. Going to the toilet more often. I've had a couple of colonoscopy's a few years ago, but nothing severe was found, other than polyps although they couldn't get the camera all the way up my colon. I've had endometriosis which used to be very painful when I opened my bowel. I've now got high blood pressure and a few other symptoms but wasn't aware of IBD being associated with AS. This may explain the added bowel symptoms. You have been very helpful.Thank you.I do hope you get sorted really soon. Xx

[Runrig01]

Thanks everyone for your kind thoughts. I must say hubby wasn’t impressed at just returning to bed, although I did check all my obs. We are at polar ends, nothing really fazes me, whilst he worries about every thing, which is partly why I hoped it was a one off. My gp has asked to see me tomorrow, so hopefully he can give me an expected timeline, and reassure me that my bloods, especially my lactate will have improved, whilst I wait. Hope everyone has a lovely weekend, it’s sunny here in the southeast 🤪🤗

[GinnyE]

Just a thought and I'm no medic, but my mum used to bleed from her bottom quite often and it turned out to be diverticulitis, which I'm sure you know of, as it's not uncommon. She had bleeds now and again for years!! No treatment. It always upset her though. Glad you're getting seen soon to get sorted.

[Runrig01 in reply to GinnyE]

I have considered this, as my mum has had diverticulitis for years. Thankfully she’s never experienced what I have, but needed antibiotics occasionally when the pain worsened. She’s also never suffered altered bowel motions, surprisingly. I think it’s between that, ulcerative colitis or crohns disease. Thankfully my trust give you the results at the end of the procedure, so should know by the end of the month. 🤗

[Runrig01]

Just had endoscopy phone, I am booked in for the 28th. Being admitted day before for bowel prep, as my adrenal insufficiency can result in me having a crisis, when I have diarrhoea or vomiting. So can still enjoy celebrating hubby’s birthday the weekend before, when we’re booked to go out for dinner with family. I just need to behave till then 😂👍

[Mmrr]

I am so sorry to read this 😔 . I really don't know what else to say.

[Runrig01 in reply to Mmrr]

Thanks. I just need to try and behave, till the 28th 😂. I’m being admitted for the bowel prep, as I need IV steroids and fluids. Now it’s just maroon coloured stools, which is leaving me more fatigued than normal. I get short of breath just climbing the stairs, and pulse racing at 120. Although in hospital it was over 140 🤗.