Ct enterography / colonoscopy - Crohn's and Colit...

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Ct enterography / colonoscopy

Sooty712 profile image
9 Replies

Had a recent ct enterography done which all can back normal, i had this done as i was too scared to have a colonoscopy after having digestive issues which have now been since October and only show improvement when sticking to a non dairy ,gluten,soya, veg and fruit free diet very limited and daughter also has the same symptoms yet when i eat these food groups i get very loud low groaning noises and then the next bm is coated in blood which can be mucus bloody at times or darker red and have chills and night sweats on and off but my daughter will have diarrhea with the noises in stomach we have been tested for calprotectin,blood test ,fit test done for me and parasite stool tests done and i also was tested for celiac all come back normal apart from my calprotectin raised and fit test high.

Am now still being asked to have a conoscopy as even though ct scan was all normal i am advised this still does not rule fully out crohns,uc and colon cancer yet i find this hard to believe these could be the causes as surely my daughter would not have all very simular symptoms at the exact same time and length of time.

I am at my wits end and have asked to be treated with antibioctics in case this is infection or parasite related.

Any advice or simular issues please share as it would be most helpful, i am quite certain i am going to end up having to have a colonoscopy which makes me very upset and worrid.

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9 Replies
bantam12 profile image
bantam12

Have the colonoscopy then at least you will have been thoroughly checked, it’s really not that bad having one, worst is the prep beforehand but once you’ve got through that the actual procedure isn’t to bad, there are various options for pain relief or sedation and it doesn’t take long.

Sooty712 profile image
Sooty712 in reply tobantam12

Thank you for the response i had a slight experience with the prep as had to have some prep before the ct scan but i have never been sedated before and worry on that part also im concerned if things were to go wrong during the colonoscopy i am very much a over thinker too much for my own good and i scare myself most times for no reason.🙁

bantam12 profile image
bantam12 in reply toSooty712

You don’t have to have sedation, I didn’t with my last one. What do you think may go wrong ? of course there’s a risk with everything we do in life, walking down the stairs and crossing the road isn’t risk free ! unlikely anything will go wrong but you’re in the right place even if it does. I have ulcerative colitis with loads of inflammation and ulceration so have had many colonoscopies but never had any problems at all.

Good luck if you go ahead, it’s worth it just for peace of mind.

Sooty712 profile image
Sooty712 in reply tobantam12

I am scared that i may have a reaction to the sedation or while having it done if i shall bleed as i have been loosing blood quite alot at times with no idea where from, the Gp feels that i have ulcerative colitis he has said he feels it is a ibd due to the raised calprotectin but i have argued this from start simply because my daughter has issues too and im guessing it must be something that can affect two people at the same time not just one. It is all very confusing and has caused me so much anxiety i think after the course of antibiotics if the calprotect is still raised and if blood is still appearing on my stools with my noises in stomach i shall have to go for a colonoscopy and again thank you so much for your advice it means alot and i wish you too all the very best.

Dalebury profile image
Dalebury

Hi Sooty712What a horrible time you and your daughter are having. Like Bantam12 said the colonoscopy isn't that bad and sedation is optional, I have sedation when having my Colonoscopy done and it just helps me relax, I get very anxious too, ( let's be honest it is an embarrassing procedure but the medical staff do thousands of these procedures and are well aware of our anxieties) but you know best how it affects you. None of us opts to have these procedures but it is the best way to diagnose what's going on. Have it done and find out what is going on. Sometimes bowel conditions can run in families, don't suffer anymore than you need to and get the treatment you both need.

Good luck and take care both you and your daughter.

Frasina profile image
Frasina

I have had 3 colonoscopies now and like you I was terrified the first time! But whilst it is not the nicest thing in the world to have to is no where near as bad as what you are thinking! As others say, the prep is the worst part! So, get it done and yes, definitely have sedation... in fact, ask for heavy sedation because you are so anxious (I did) and you are so relaxed that you don't really know it is happening but you can still turn a bit if they ask you to.

Thousands of these are done every week and they know what they are doing so please put your mind at rest. In terms of prep, make it up and put in the fridge to get very cold. Add light coloured squash to help with the taste and have another drink (I chose Lucozade) to drink in between the prep to mask the taste. Honestly, all very doable. Good luck.

birkie profile image
birkie

Hi sooty712❤️

I've had 4 colonoscopys the last one was around a week ago, the prep is not nice but I added a little bit of barley water to it to make it more palatable.

I've had 3 of the procedures with gas and air and found it to be OK, a little uncomfortable with some mild pain, but this time I opted for sedation as I've been having bad cramps and diarrhoea with inflammation of the bowle.

I have colitis and are lactose intolerant I kept this under good control for years and knew my triggers, dairy, orange juice, bread certain medications ect, I cut all this out and we're doing OK my problem started when I developed graves thyrotoxicosis and lost my thyroid in 2019, I was started on thyroid medication T4 which contained lactose and other fillers so after nearly 3 year's of suffering with these bowle problems and absorbtion problems a new gp saw what I was passing (I took photos of my poo💩) she immediately sent me for the colonoscopy which came back clear.

As I told the nurse it's nothing to do with the colon it's what I'm putting into my stomach that is causing the cramping /diarrhoea /inflammation and like yourself awfully gurgling noises😣.

Unfortunately the nurse put my cannula in wrong so the sedation didn't work, I'm making a complaint as the reason for having sedation was because of the pain I was already in😠

2 weeks previously I'd had the camera down the stomach for which the sedation worked wonderfully, I knew very little about the procedure hoped the colonoscopy would be the same but alsa no. (because of wrong cannula insertion).

If your anxious go for sadation especially if you have ongoing bowle pain I'm sure you'll remember little to nothing about the procedure (you do need someone with you to take you home afterwards) it doesn't last very long either.

Good luck I'm sure you'll be fine❤️❤️

Steve2357 profile image
Steve2357

I have had Crohn's for 40 years and I have lost count of the number Colonoscopy's I have had. The sedation you get is just to relax you and reduce the pain, there will still be some discomfort, especially when they add in air, but you are still conscious and if you have any problems you can just tell them to stop. You are still in control. During the procedure you can normally see the screen showing the camera going through the bowel, but you do not have to look.

012703060610 profile image
012703060610

I have been on a bowel journey for three years. I had colonoscopies, pill cam, endoscopies, MREs, Hydascan to rule out Gallbladder. I started having colonoscopies in my 20s for polyps and still get them about every three years, but have had three in the past three years. Yes the prep is not fun and try to target early morning appointment. I find I get to nauseous for later in the day appts. Two years in with nothing looking crazy, albeit I was on prednisone of one scope rendering it pointless. I finally paid out of pocket and got the pill cam done. It show delayed gastric emptying due to gastroparesis. The pill cam should be your second line testing to visualize the full small bowel if the regular colonoscopy is normal. The camera is really the only want to see into the small bowel. For me the pill didn't leave my stomach for several hours and we never saw it leave my small bowel so I had to get an X ray to make sure it cleared and was fine. I was just dumbfounded no one had thought of this test for two years. I feel your pain and for you daughter. All of these things are total disruptive in life.

I get the anesthesia part totally. However, I find the time to be blissful. The drugs they used 20 years ago really knocked you out. Today it is conscious sedation so you are awake and can even respond a bit to commands but may not remember anything at all. I've done one without sedation and it is uncomfortable. Some cannot tolerate. I did ok, but will now always conscious sedate.

In the end I have micro colitis and gastroparesis. We still haven't gotten all under control but can say that with a soft food and liquid diet things are ok. The foods you mention are the same for me......but life is so boring with the same foods over and over. There are times I wish I could just skip the eating process totally to not get jealous over food. There is no doubt that if I eat a trigger food, I pay for it for at least a day or two after.

As an aside, I had a friend who she and her daughter both became allergic to gluten at the same exact time. Very strange but who knows how all of these things work!

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