Upcoming test.

[misty14]

Hello everyone.

I'm new on this site and would just like some info.

Has anyone had a colonoscopy with the added test TI intubation?. I'd love to know what was it like as I've just had colonoscopies on their own!.

I've been diagnosed with colitis for ten years now and because I've had a constant flare since March I've got to have this test to see if my treatment needs changing.

I've just had a cancellation for Sunday to have it so your experiences will be greatly appreciated.

Many thanks and keep safe.

MistyX

[Viklou]

I've had Colonoscopies too but like you never had ti intubation. Apparently that's what's planned for my next one. I've been waiting since mid March due to Covid I've no idea when this is likely to happen. It was upgraded to urgent at the end of May but still heard nothing

[misty14 in reply to Viklou]

Thank you for replying viklou, I'm sorry you have been waiting such a long time for this test. That's awful as your symptoms have obviously worsened. I've been waiting since July and mine were worsening so I rang the endoscopy bookings dept at my hospital and spoke to a lady who said maybe she coukd book me in mid sept!. I had a call today from the same lady who said she remembered our conversation and a cancellation had come in and she wanted me to have it!. I don't expect to be remembered like that!. So you coukd do same and you might get lucky like me.

The intubation test is to look at a particular junction of the intestine that can be affected by colitis or Crohns. The nurse rang also and said its sedation for this test thankfully. I also have to go on a low residue diet!. Have you done this for your other colonoscopies?. Which IBD have you got?. It sounds like you've had a tough time needing so many tests!. Keep well and safe. Xx

[Viklou in reply to misty14]

I don't have an IBD as such but a diagnostic dilemma as my brother calls it. I have lots going on. Th gastro hasn't dismissed me yet and been going to see him since 2018. He tells me IBS but if so why not pack me off after the first botty cam. To be honest even though some days I barely function and by the end of the week I'm so done I just mainly sleep what I can. I'm knackered but struggling to get more than a few hours a night. Why can't you sleep when knackered is beyond me.

[misty14 in reply to Viklou]

That's really tough viklou not to have a set diagnosis yet but to be suffering so much. Good description from your brother!. You've got a good Gastro though who wants to do everything to get you a diagnosis and not dismiss you. They're worth their weight in gold. He obviously isn't too convinced it's IBS either and maybe has told you this as he realises you need a label for all your suffering. It's probably your gut not allowing you to sleep. Mine is affecting my sleep too as it's so unsettled. I do hope you get your test soon. It's worth ringing them. Keep safe Xx

[EOLHPC]

Hello misty: I think this is one of the relatively more recently developed endoscopic investigation...my husband is 66 with very early onset severe crohns which was finally diagnosed in his late teens/early 30s and even at his leading university hospital, the only investigations of the full colon & ileum were via xray techniques including barium swallows. His crohns was most severe at the ileocecal joint (where ileum meets colon with a valve between) and it was this area at which he had all his bowel resections. So I’m very interested in your question, and ran a search that came up with this 2014 BMJ paper, which you’ve probably found already...but I’ll include it now cause perhaps others reading your thread will be interested:

gut.bmj.com/content/63/Supp...

Hope this procedure goes smoothly for you & your medics, + helps you all to better understand & manage your IBD. ❤️🍀❤️🍀 Coco

[misty14 in reply to EOLHPC]

Hello dear Barnclown. Thank you for your helpful reply and for sending this info. I haven't been researching too much so I'm sure this read will be very helpful. Your husband is an inspiration to me how he's coped in life with having such awful times with his Crohns. They want a thorough look as might explain some different symptoms I've been getting this last two years and need for treatment change. I'll let you know how I get on , not long now till sun.

Hope your keeping as well as possible. Xx😊💕😊Xx

[EOLHPC in reply to misty14]

You’re welcome! This link is to a 2019 ‘review’ so it’s bang up to date...but JUST read the opening paras if you prefer not to see photos of the inside of the bowel! Ironically, I am being treated for what my lead clinicians in rheumatology + Immunology + gastroenterology term a “crohns- like enteropathy” mainly caused by my early onset Lupus + hEDS...and the most severely effected parts of my intestinal tract are the ileum (my ileum has failed al together) + the ileocecal join....my ileum was investigated by Video Capsule Endoscopy & MRI Enterography...now your post has me wondering whether some day my husband & I will be given this colon+ileum Endoscopy you’re having. Hope you’ll let us know how this goes ❤️🍀❤️🍀❤️

NB click on the ‘free full text’ tab below the ‘abstract’ to open the article in full:

europepmc.org/article/MED/3...

[misty14 in reply to EOLHPC]

Thanks for this really helpful upto date info Barncliwn. I do appreciate your good wishes and help. Interedting what your diagnosis is now hence you being on this forum. It sounds like you've been much more thoroughly investigated in the ilium area than me and I'm so sorry it's failed altogether. This is my first test for it and I'm having a full colonoscopy as well as my Consuktant wants to see everything . It may explain the added pain I'm getting on the right side and increased nausea with the changed bowel habit. My local hospital has now a proper IBD service and I guess this is why they're offering more up to date tests. I noticed they now offer the capsule endoscopy so who knows if I need to have further tests that may be what you've had!. You both coukd in the future be offered the ti intubation as its newer!. I'd better get on with some more reading!. Wonderful that once again we can learn from each other. I'll let you know how I get on.

Do both keep safe and well. Xx

[EOLHPC in reply to misty14]

Thanks. That’s great about your hospital! Yes, the procedure you’re having inevitably is a colonoscopy too cause they are having to travel through your colon to actually get into your ileum, as I understand it...so with TI Intubation you’re having a combined ‘colonoscopy + ileoscopy’ in effect...

Thing about VCE is: it’s no good for biopsies....& also MRI enterography doesn’t do biopsies. Whereas I think you can have biopsy during this colon+ileum endoscopy....so your medics can do more than just ‘look’ inside your lower GI, which means more chance of thorough, convincing diagnosis 👍...Yes, my husband may some day have this procedure, but I very much doubt my lead clinicians will do any more investigative procedures on me because my childhood onset progressive debilitation is too great & my chronic hypersensitivity too extreme - our agreed aim is to keep me as stable as I am now for as long as possible on the combined therapy treatments that are helping me be this stable.🍀❤️

[misty14 in reply to EOLHPC]

Thanks barnclown for all your info. Your spot on about the definition TI and what it is. It does stand for terminal ilieum. I did look that up. Also your spot on re the endoscopy doing biopsies. I'm relieved it's going to be so thorough .

I didn't think you'd be a candidate for any of these tests now because I know what you've been thru and so sorry its had such a cataclysmic affect on your poor intestine!.

Thank god they will leave you be, too frightening if they didn'.t!. People may not reply after their procedures because it was too awful or they didn't get a definite diagnosis!. Thanks to you once again barnclown I've learnt a lot. Thanks so much for sharing and taking the time to do it. Do hope you both have a good, safe weekend as possible. Xx

[EOLHPC in reply to misty14]

👍🤞🙏🏻✌️💓🍀

[misty14 in reply to EOLHPC]

Hello dear Barnclown

Just replying to give an update about my Colonoscopy and TI intubation which I hope you and others will find interesting and helpful.

As I thought, my bowel was completely clear, no nasties or damage which was a big relief. Biopsies taken so awaiting results in a fortnight!. I've re-read my GI Consultants last clinic letter and he states that if the pressure is low during the TI intubation test then he'll treat me as having a functional problem ie IBS i guess. If it's high then again like the stool test it proves there's inflammation in the intestine and the endoscopy is used as a helpful diagnostic tool. I don't know what the result of this is for me but on my results sheet they do say awaiting biopsy results and send back to GI doctor. Maybe the pressure was high . Only time will tell. The other reassuring thing he wrote was he fully realised the difference i have in symptoms and evidence so that means he's not afraid to cope with a case that's difficult and is its own unique version of IBD which looks like I am similar to you.

I thought of you a lot as doing the prep was really awful this time and its taking me much longer to recover. It also proves evidence of inflammation as joints have flared etc at same time!. It would kill you to have to do it barnclown now with your intestinal failure so thank goodness you can have less invasive tests if needed!. I sure don't want another any time soon!.

Do hope you get on well with your IVIg bloods and session this week. Thank you again for all your helpful info TAKE CARE and keep safe. Xx

[EOLHPC in reply to misty14]

🤩 WELL DONE❣️ Many Thanks❣️ You’ve been on my mind 😅❣️ imagining you getting as much R&R now as poss ❣️💐💐💐💐💐

[misty14 in reply to EOLHPC]

Many thanks Barnclown, yes I am as I need a lot of recovery. I'll post an update if you like when I get resukts?. Xx🙂

[EOLHPC in reply to misty14]

PLEASE DO❣️ But only when you feel up to it🌈🕊💫🍀

[misty14 in reply to EOLHPC]

Thanks so much Barnclown I will. Xx

[EOLHPC in reply to misty14]

👍💐❤️🍀

[misty14 in reply to EOLHPC]

Hope your recovering today from your mega day yesterday barnclown.

Just thought I'd give you a quick update. My biopsy resukts were clear as well so no active ibd going on. The consultant appears to have treated me as a one off patient as he's discharged me back to gp for ibs treatment!.

I'm speaking to gp next week as probably need a letter written as to clarification of ibd care and budesonide doses etc. They're messing me around. There's a distinct possibility my symptoms and stool test fit with SIBO that I've had before. Again adking gp as I've researched it this am!.

We battle on dont we!. Keep safe and take careXx

[EOLHPC in reply to misty14]

Sounds like your long experience of early onset illness has stood you in good stead: you more or less expected this...so were ready to cope, as you clearly are now..,well done! So, your campaign for the most convincing diagnose poss & most effective treatments poss continues! At least you’re in good company here, thanks to HU! ❤️🍀❤️🍀

[misty14 in reply to EOLHPC]

Thank you dear barnclown for your message of support. Ive thought of you a lot as also what's helped me is my folder of hospital letters and I can quote dates at my gp etc. It all helps our case so much doesn't it?. The forum is a god send as others experiences help us fight or ask the right question that can just make that all important difference. Also gives us confidence we're on the right lines!. Besides we wouldn't have met such lovely people with out it. Not long till weds now!. Hope you have a good week, not too many appts. Xx

[EOLHPC in reply to misty14]

👍💐🍀❣️🍀❣️🍀❣️

[EOLHPC in reply to misty14]

PS the term ‘intubation’ simply means ‘inserting a tube...that definition clarifies why your procedure is specifically includes the term, ie: you are having an endoscopic procedure which combines colonoscopy + ileoscopy with intubation being performed at the join between the colon & ileum to give the endoscope access to the end bit of your ileum, aka small intestine...& ‘TI’ stands for ‘terminal ileum’, I think:

en.m.wikipedia.org/wiki/Int...

Thanks again for posting about this👏👏👏👏...I’ve learned a lot thanks to your discussion, and am sure others have/will have too... l always tend to think it’s revealing when others who’ve had a procedure don’t reply to a post about what it’s like to have it done...possibly this is, as you said, cause only specialist IBD units do these tertiary investigations 🤷🏼‍♀️❤️🍀

[EOLHPC in reply to EOLHPC]

PS 🤔 Thinking about all this, I am realising that, course, the long crohns stricture (scar tissue + narrowing) my husband has due to all the surgery & inflammatory process in the area where ileum & colon join, this sort of intubation procedure would be extremely risky & probably impossible...🤷🏼‍♀️

[misty14 in reply to EOLHPC]

Thanks so much for your messages and good wishes Barnclown. I have read the info you sent and it's interesting all the different possibilities that could be wrong in that area. I had no idea , even a combination of Crohns like and colitis like can happen as well as inflammation of the ilium, ileitis!. My feeling is knowing my history and how colitis was diagnosed by biopsy only , that they won't see very much tomorrow and biopsies will be taken. It will probably be mild despite my symptoms so will have to see what the Gastro Consuktant makes of it!. I do think it coukd be illiitis!. It's just like you , we're at the mercy of their understanding and this Consuktant who ordered the test is new to me!. I do agree about your husband not being right for the ti intubation!. That's one thing less to worry about for you both. I'm starting the prep now so will disappear and let you know how tomorrow goes. Not long now thankfully and it'll all be over.

TAKE CARE and MANY THANKS Xx😊💕😊💕

[EOLHPC in reply to misty14]

😍👍🌈🤞🦓🍀💫❣️❣️❣️❣️❣️