I gave up Tocilizumab /Actemra early because of lower abdominal pain and diahorrea about a year ago. My Colonoscopy showed diverticulosis and polyps which were removed. The pain etc has continued. I have been phoned by our local hospital to come in to hospital to prepare for the procedure that involves swallowing a capsule sized camera that takes pictures recorded on a belt thing I wear. Monday will be the preparation and Tuesday the procedure. The nurse had to consult someone else every time I asked a question, so I stopped asking. I know that I take my medication as normal and that I don’t eat for 12 hours before swallowing the camera. I hope I can drink water. A bit worried about Tuesday’s Pred on an empty stomach ( can’t eat for 4 hours after it.
Has anyone been through this who can fill me in on what to take with me and what it all involves?
many thanks! Jane x
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SheffieldJane
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I have NOT ever swallowed a camera..I assume it is tiny!! and will be thinking of you. And sending lots of healing energy to your poor aching stomach. It does sound amazing and possibly much better than the usual tube down the throat. ox Keep us posted!!
Jane, ive taken my pred on an empty stomach before procedures several times. I take the coated ones with no issues. Good luck with the procedure ive had the tube before but not this. Hope it goes ok for you. Let us know how you get on x
Have they told you to stick to a clear liquid diet for the weekend? That is often fairly usual - gets the gut ready for the clear out. So to speak! Though that seems optional with this approach.
They have told me nothing. Thank you so much for the clearly worded attachments. They are much better than anything I was able to find. I had soup today and I think I will now go for clear liquids, it’s bound to be easier on Monday.
Hi Jane, I haven’t had an in patient procedure with the belt that you mention so can’t advise on that. I have however had outpatient endoscopies involving camera down the throat three times, the first two I was awake and just had a numbing spray on my throat, the third involved a colonoscopy at the same time so I was advised to have anaesthetic. The camera must be tiny and the person who was doing it while I was awake was very gentle and reassuring. She made eye contact and I just kept trustingly looking at her! The nurses were very kind and encouraging too. I was able to stay calm. There was a television screen above the bed which showed what was going on but I didn't see it. On the first occasion they found I had a sliding hiatus hernia and loose stomach valve and took a sample for coeliac disease which I didn’t have. On the third one they also found stage 1 inflammation in my oesophagus which I was told is not that uncommon at my age. I was advised to stop any PPI or similar stomach meds I was taking for a week beforehand which I found challenging. Your hospital should advise you on what to bring, probably overnight stuff, nightclothes, toothbrush, soap, towel etc. can’t remember if/when you can drink water. Someone else may know or you could try Google. Wishing you all the very best. I was glad to have things checked out and relieved to be told it was nothing sinister.
Thank you for this. I am not expecting to hear from the hospital again before my Monday morning appointment. I had a horrible nurse for my colonoscopy, who seemed to think her role was to keep me out of the young doctor’s hair. The other nurse was completely silent . A very odd atmosphere. This has added to my trepidation. The so called sedative did nothing, possibly because it was in the same IV as hydrocortisone. I did watch the procedure though, pleased to see pink healthy tissue. 6 non —cancerous polyps were removed. An abnormal FIT has led to this “incredible journey” ( the movie). I won’t sleep a wink, I hate mixed wards, ( weird past experience) a black track suit for me. Your personal experience is really helpful. It sounds much scarier than this procedure. I wish I didn’t have to stay in, though.
Hi Jane, sorry you have to go through this procedure. I haven’t experienced this ‘capsule camera’… but it is good you have been offered it as it should show what the exact situation is and hopefully they can help in relieving any pain you keep on feeling.
I understand your anxiety though and I share it. Sorry I can’t give you any useful tips. However I am going in for a hip replacement operation on Wednesday 1st February and I too will need to take prednisone (5mg) and Levothyroxine and Liothyronine (hypothyroidism) at 6.30 with water (not too much because need to stop drinking after 6.30 )… so I too wonder how this will work out. The prednisolone i take is coated so hope it will do it’s protecting job. I usually take Nexium (PPI) every morning before breakfast but shall not do so on Wednesday. I must not eat either. a light meal not too late the day before. Because I have Sjogren’s my mouth (and eyes) get very dry… so have asked the surgeon’s secretary what can be done especially if I have to wait for the surgery for a long time… the surgeon said they would moisten my mouth but couldn’t drink any liquid. That’s all I am able to let you know… very little, sorry.
So try keeping as calmed as you can (says she who’s overwhelmed!) and I am sure it will go well and will be quick. You’ll be able to have a drink straight after the procedure. Sending you positive vibes, courage and very best wishes. xx 🍀
"You’ll be able to have a drink straight after the procedure"
No she won't - you can after a traditional endoscopy but with the capsule version you must usually wait a couple of hours before water and 4 hours for other things.
That’s useful to know and pleased you have corrected my assumption based on traditional endoscopy. Am sure Jane has been made aware now. So not sure how she will manage? Perhaps moisturising her mouth with cotton wool or other way? Pleased she’s find what the problem is and can be helped.
Thank you for this. I hope you are your best bravest self on the day and the operation is a marvellous success - everyone says it is a real game changer.
I get very thirsty with a sandpaper mouth too. Getting old is not for sissies ( Bette Davies). 💕
Sorry it wasn’t much help… and thank you for your kind words.
Am not so much worried about the operation but rather the raging RA flare up post surgery as I have already stopped injections of Tocilizumab and can’t restart until 2 weeks post op as long as the wound is dry. Having to rely on my ‘good’ hip which needs replacement too, and painful shoulders, writs and fingers, is concerning since I can’t put any pressure on them, yet must avoid hip dislocation. I wouldn’t be unduly worried otherwise… still it has to be done. Living alone means I’ll go into a care home post operation, for at least 6 weeks. My family live too far away but will take me into hospital and then after discharge into the home! Old age indeed… is no fun especially when there are health issues. Ah Well… we need to keep going. If I were a car they’d give me a full refit in one go… or put me under the recycling crusher! 🤣.
Thank you… there’s plenty of go in your engine too! I too will have to spend 2/3 days in a mix ward…. Not looking forward to that either… Don’t worry, we’ll cope, made of tough stuff. And I’ll hide behind the curtains too…
Hi again, Jane. Re the dry mouth problem, I was able to rinse my mouth with water as long as I didn’t swallow. That was unfortunate that you didn’t have a kind nurse - it can make all the difference. I hope your experience will be different this time. I was in a mixed ward recently for another issue. In my case my apprehension was misplaced. The men were either quite gentlemanly or too ill to be a problem! At night I drew the curtains all the way round my bed which gave me some feeling of privacy. Will be thinking of you x
Hi Jane, so sorry you had a hopeless nurse!! From a retired nurse's point of view it makes me so mad!!!! If you are dealing with a new procedure the least you can do is research! PMRpro's links are great, this is a new one on me. Good luck to you. Hopefully someone will answer all your questions on Monday. I took pred on an empty stomach for a procedure last year and was ok.....just once should be fine 🙂 Linda x
I have just read your reply to SJ. Good advice for everyone, and pleased to know a good hard shell underneath. Hope you are continuing to improve, and had a good day in Elsecar. J
Hi Jane, I replied about the red dye, but looks like I didn't press the 'Reply' button! Try again.
I take the 5mg red dyed tablets and wash the dye off every day, under the tap, in a sieve - just in case! I found the dye made me breathless, which is a known side-effect of E124, ponceau 4R. Washing leaves a hard, white tablet which doesn't dissolve or go soggy and the contents are still intact. You could prepare a couple for next week and dry them on a paper towel.
Hope all goes well. I'll be thinking of you. xoxoxox
Hello Jane , Sending you positive thoughts and huge hugs. I have Ulcerative Colitis and have had several colonoscopies but never a camera. The staff have always been very kind and calming. I had an endoscopy before Xmas as my reflux is so uncomfortable. Told I had small hiatus hernia . Still suffering with itchy throat and chest! GP told me to go to A &E on his phone call. I laughed and said don’t be silly , I’m not that ill 🤬. He then suggested it may be rhinitis and he could refer me to ENT chaps as he called them. I’ve decided to book a private appointment with ENT , going on Monday. I will be thinking of you too , Take care xx🌺
I’ve come very late to the ‘party’ ( busy day yesterday) but want to wish you well with your procedure. I’ve always been uncomfortable with the thought of having to swallow anything that isn’t food or liquid and my imagination runs away with me so I can understand your trepidation. You will be in very good hands and I look forward to your next post reporting that it was a piece of cake (in fact, you can treat yourself to some of that as a reward-much better than a lollipop or a sticker 🙂).
PS. It’s likely that the worst effect of a mixed ward will be the snoring. Apologies to any man here who takes exception.
I haven,t had this procedure but I have had a colonoscopy. I found that drinking Bovril was brilliant as you can,t eat. I really felt like I had eaten something after. Try it.
I've never had Tramadol, so wouldn't know, but it's an opioid like codeine and can cause constipation - not that there'll be much in your gut this weekend, but you need an empty bowel for the procedure. Sorry to hear you're suffering so much and hope they can sort out what's going on for you. xoxox
All the very best for you on Monday, Jane. Fear and trepidation is worse than and takes a lot more time up than the experience usually. I overthink everything:
Me: what could possibly go wrong .......... Anxiety: I'm glad you asked. If worrying burned calories at least it would be useful.
Hi Jane. So very sorry you have to go through all of this. Can you expand a wee bit more on the symptoms which let up to this as I have a lot of gastro pain, diarrhea and diffculty swallowing with esophageal spasms.
I have had an intermittent pain in my lower right abdomen, not tender to touch starting pre -pandemic. I experienced permanent diarrhoea and occasional constipation. I put it down to Pred side effects. This pain got gradually worse and it became permanent , spreading across my lower abdomen. Occasionally round to my back. I also experienced the occasional oesophageal spasm once being blue lit to hospital with a suspected cardiac event. My diet became limited as some foods triggered more severe pain - bread, pastry, citrus fruits, spice, meat for example. All tests eg colonoscopy, gynaecologist showed nothing interesting, just a little age appropriate diverticulosis. I stopped Tocilizumab because this drug seemed to make the pain sharper. I wondered if poor motility was hampering bowel movements or even if there was a blockage. I experienced occasional, severe, painful spasms in the back passage. I am also permanently thirsty and dry mouthed. My recent FIT test ( poo) showed blood. This brought forward further tests with the Gastro camera, due on Tuesday. My GP wants to rule out cancer, as do I. No medications help much, possibly Gaviscon a little and paracetamol. Definitely worse for eating and gravity ( standing up).
I wish you all the best and I hope it all goes well, But please, please let us know all about it. This is really exciting technology and so interesting. x
Hi Jane, I can’t comment on swallowing the capsule procedure but I’ve had three endoscopies a colonoscopy and an angiogram. I’ve found that all these procedures weren’t as bad as I was expecting them to be. I always go for the sedation option if it’s offered. Good luck, we’ll be thinking of you, Tiggy 🌸
yes, I was looking forward to that with my Colonoscopy, previously. It didn’t seem to take. I am very susceptible normally. I think it might have been the hydrocortisone in the IV. They won’t give it for swallowing a big capsule though, sigh!
I've had the pill camera endoscopy done in April of last year.
In the morning when you go for the test you will be hooked up with a abdominal belt with a device (or leads attached to your abdomen) and then you will be given a pill camera to swallow in front of the nurse and then the nurse sets the device to start recording for the test.
The recording lasts approximately 8 hours and in that time frame you are instructed when to drink and when to eat a small meal.
Printed instructions should be given to you by the nurse who gives you the pill camera and belt.
Sometimes people poop out the camera at the end of the test and others take a bit longer. The pill camera flashes so if you poop it out at the end of the test, as I did, you will most likely see it flashing in the bowl. You don't have to retrieve the pill camera, so just flush it.
In some instances the pill camera doesn't pass out of your system and then needs to be retrieved (by this time the pill camera is no longer flashing). Usually an x-ray would confirm this and its location.
The pill camera is small but still big enough in size relative to a pill so you might have an easier time acknowledging when you pass it. I've heard some people use a poop specimen hat that fits over the toilet to catch when you poop so that they can see if and when the pill camera passes.
I hope you do well with your test on Tuesday and that you have more answers. 🙂
This is so helpful thank you very much. I can’t find definitive advice on how long to be on a clear liquid diet, prior to the procedure. I have only had liquids since Friday lunch time and the prospect of having nothing substantial until Tuesday teatime seems a bit bleak. However, a ruined test would be bleaker. Can you remember your advice? I had none.
Being on clear liquids since Friday and your test isn't until Tuesday morning is a long time to be on.
I can't remember specifically to the bowel prep before the pill camera test but from me having so many bowel preps (I've had most of my large intestine removed) it would seem a non-fibrous soft diet 48 hours before and 24 hours before clear liquids would be in order. But bear in mind, for me, I've had almost 5 feet of my digestive system removed so my transient time would be much faster. On the other hand, if you have Crohn's then your transient time could be just as fast.
Since you have been on a clear diet since yesterday is everything now running through you?
If so, start eating non-red jello or gummies for glucose to fuel your brain and clear soup for salt to keep your electrolytes up if you are experiencing diarrhea.
If you have any more questions I'd more than happy to answer as best as I can.
Interesting that they are doing the pill camera test and not a colonoscopy. I am guessing they cannot take biopsy samples with the pill test? I started with issues about a year after being on prednisone. Blood tests showed celiac. Colonoscopy was visibly clear, however in the lab the biopsies showed microscopic colitis which won’t appear on camera.
I wondered about microscopic colitis because my symptoms fit. During my colonoscopy 8 months ago, 6 polyps were removed and lab tested, it was all normal. You are right that biopsies cannot be taken with this procedure. If they find anything, there will be more investigations. Thanks for your input.
I do hope all goes well for you! Like others have mentioned I haven't much advice to give as I've only had the tube style Gastroscopy and Colonoscopys. Sending best wishes and healing fom Lancashire...please keep us posted (I'm seeing someone Monday for more intestinal issues) take care 💐 x
Thank you for the permission to give a blow by blow account of this procedure. I really do think that our medication gives rise to gastric problems, in some people. I have been on Pred for 7 years (4 for PMR and 3+ for GCA).
Agreed Jane! In addition to steroids being a risk factor for the diverticulosis/diverticulitis that I’ve been dealing with the past 1.5 years, I have most of the others as well (genetic history-both of my parents suffered with it and my dad need surgery, and being overweight). It makes sense that thinning skin from long term steroid use can impact our intestines/diverticuli,especially in combination with straining due to constipation.
Like you my diet options are shrinking and I’ve noted that I am getting fearful when I eat. This is leading to continued weight loss albeit not in the most healthy way.
I wish you all the best with your high tech procedure. I hope it leads to a diagnosis and subsequent treatment options. Nothing worse than knowing something is wrong, but not what!
I am grateful to you for sharing your experience. So far I am not medically diagnosed. I am afraid that my once excellent primary care provider only seems good at sending me away. It is thanks to a very young, pregnant GP, whose mother instincts were finely tuned enough to start the ball rolling to get to the bottom of all this. She was fierce.
Yes, and I'm so glad we can share this kind of info...being on our medication I suppose is the lesser of 2 evils but the effects are worrying...I hope all goes well for you 💐
YES ! I can pass along information about a capsule study.
My ex-wife had one some time ago, and I've just texted with her to confirm my memories of it: a fantastic experience, especially considering it can eliminate the need for exploratory surgery. We live in the U.S. and in her case this was an out-patient proceedure; she just walked around the house wearing the receiver belt, so I'd imagine if you're staying in hospital for it you just need to take comfortable clothes and some entertainment
The only issue she had was swallowing the camera pill, as it was the size of a large vitamin (though this was in 2008 and tech gets better and smaller all the time). Once on board, totally passive and easy. No issues whatsoever - we were both ecstatic that the option was there for her as she'd already been scoped multiple times from both directions and was just worn out from the entire experience, so something as completely easy and non-invasive as the capsule study was a huge relief to her.
Obviously this was her experience, but I can't imagine it's gotten worse with the progress of technology. I know you must be going through a ton of anxiety and emotion around your struggles - I hope some relief from worry about at least this part will help a bit. It's easy-peasy.
Bonus: the movies are incredible! Like watching a science fiction film.
Hi Jane wishing you all the very best for your procedure on Monday. Will be thinking of you. Trust all goes well and look forward to hearing how it went.
Oh, Jane, another challenge for you. With all you have experienced I think I would be thankful to have a birds-eye view of 'what is in there'....I hope the results can give you some peace. You'll be in my prayers. (I do know a few folks who have done this ...amazing confounding medicine) xo💞
SheffieldJane, this camera is an Israeli invention designed to replace colonoscopy because it doesn't require anasthesia and it goes through the large intestine, typically missed by the latter procedure. The camera's dimentions are: 1.22"×0.4", the size of a vitamin peel. The camera will go through your intestines and will get out through the rectum. I wouldn't worry about the procedure but would ask for specific directions about preparation.Good luck!
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