Awaiting cameras under 2ww ( contains my symptoms )

last year I was very unwell with watery stools many times a day and severe pain in the right side of my abdomen, nausea so bad and I felt ashamed ( i know not to be now ) I did the stool sample and qfit and i did not know until end of feb the results ( I got very critically ill with a totally unrelated thing and was close to not making it. 56 days i. hospital and a lot of my abdominal wall was removed .

sepsis took hold and i had severe brain fog so i totally forgot the whole thing until a friend told me 

when i had a follow up with my consultant they said k had missed a colonoscopy i was like what do you mean and he said about  inflammation found on my test results ( when i registered at a new gp i saw results and was in shock . 

my calprotectin was 1800 and my qfit was abnormal but can’t remember the result

they removed a mass on the right side of my abdomen also during the first surgery of 4 . so that was what i added up to when i knew about the pains in my abdomen 

i have a gross thinning of the abdominal wall and so have an incisional hernia not helping the abdominal pain and i have painkillers as have chronic pain all over too ( being investigated as now complex health ) 

I had a virtual colonoscopy in march which showed loss of haustration in the descending colon . 

I have extreme fatigue and my dad does all the house stuff and i’ve also lost a blood clot which was about a 10p size roughly the formed part and  My stools vary now from a mushy sludge to completely constipated which i have laxatives for .

i never feel like i’ve finished going and i’ve been going a lot in amount when in the toilet and it often fills the water if that makes sense . i would get off and then know I would go more so it could be 10 mins sometimes and it has started to feel differently like it’s just blowing out of me like i say that’s hard to explain .

my qfit this time was a lot less but my gp called me in and said i needed to be seen by colerectal urgent under the 2 week wait and have camera both ends .

this was tuesday and I was just so exhausted i had to get a taxi and even using crutches i can usually manage but recently i hardly get out of bed . 

my bloods were fine so it ruled out deficiencies in iron b12 and something else .

I was 17.7 stone last march ,  then march this year i was 13 stone and despite icu and all the 56 days in hopsital i still feel that js a lot of weight loss

i often feel a sharp stabbing in my back passage like something is being jabbed inside of me 

I have problems passing urine 

I have no appetite so i never feel full either 

My sister has chrons and i’m aware of ibd being genetic sometimes but I don’t think this is . I don’t self diagnose but having severe anxiety especially over my health I just want the tests done now and i’ll deal with it whatever it is . 

I have a lot of other things going on but to be this wiped and the abdominal pains are so bad it’s hard to pin point as i say i’ve got the hernia too (i’ve  got a surgical appointment in august for this ) 

i’ve got the pre assessment on the 28th and my social worker has asked the liasons to come with me as i don’t have people around really and I’m trying to think of things to ask .

I read about the colonoscopy and I know the dreaded prep , i had a lot smaller volume in march and that was bad enough.

i have a note pad in my phone so if anyone can think of things for me to ask i’d be greatful

this isn’t me being a chicken but i’m aware they do sedation but i’m always a survivor domestic  abuse  and so  I want to know wether i would have grounds to ask them to do a general anaesthetic . I have ptsd very badly and this stand for the abuse and then my critical health last year when i nearly didn’t make it . how would I ask this as i don’t want to fall appart in front of them 

they have booked both camera for the 13th july 

it’s just hanging over me and i keep saying to myself like last year it’s your anxiety causing all this symptoms but i know it isn’t and i’ve got a support group for bowels and bladder and some get told it’s either hemmoriods or ibs and years later are told it wasn’t so i’m scared of that too .

my head is like a blur and i’m scared and i have other stuff with life like a move to a ground floor flat in end of july and i have had poor mental health since my teens but currently scoring with severe anxiety and depression ( this was before i had these results ) 

i’m 38 years old female

im sorry it’s so long but i don’t know where else to put this or if there’s a helpline for people who are in a 2 ww

ty

  • Hello and thank you for your post,

    I am very sorry to hear about all that has happened to your health and I can appreciate the worry you have about having endoscopies.

    While I know the prospect of having the bowel prep and the sedation is worrying please know that many people go through these investigations and are able to cope with having them.  Also, please know that if there is a concern with you while you are having them then the doctor will stop the procedure. Please remember that the team doing these tests are experts and can usually do them quickly.

    After you have the endoscopies done you will get a verbal and written report about what, if anything, is found.  Sometimes biopsies may need to be taken, but that still does not mean you necessarily have cancer.  Remember that other bowel conditions could have caused your FIT test and Calprotectin test to be abnormal.

    I hope you will have more information about what is the matter soon. In the meantime, you may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care,

    Caroline

  • thank you .  I just want it done now . I feel terrible and whatever it is then I can deal with that in whatever way I need to , it’s more my anxiety that is beating me right now , I have borderline personality disorder and so I just wreck myself in my head 

    at least once it’s done i’ll know 

    they did find a polyp only 4 mm -  this was in march . my consultant who treated the infection. in my abdomen then found out all the test results and said possible IBD and my sister.had chrons and last year did a good month - 6 weeks i was in the toilet a lot . 

    I do have this on occasion but my stools are more of a mushy consistency 

    Im not scared of ill health . 

    i woke up on the 26 selt hours from death and I have a whole new view on it and people know my feelings nke i became strong enough mentally to answer people back and i’d never done that and my belief js things happen for a reason and there are good things out of my critical illness like i’m closer to my dad and it’s made me be more open and not so darn stubborn 

    do you know more about the sedation ? i’ve had something when I Had dental work and wonder if it is that

    I don’t have any information on the camera from the top is there something that is online ai could read i’m sure they’re all the same but anything i should know or do ? it can’t be comfy and afterwards like you can get a pain killer spray for the throat would i be wise to get thst or anything ? i kinda know a glimpse of the colonoscopy prep due to the virtual colonoscopy I know the procedure was different but i know about the toilet . i was thinking maybe be downstairs thst night as i have poor  mobility and the bathroom is downstairs . 

    i had a couple of people say that they had theirs done under general and if that is possible i’d opt for thst to be honest for many reasons 

     

    could I take a small soft thing . my friend made me a chrochet fidgety thing and i out aromatherapy oils and i’ll take it for before and after but could that come into theatre ? should i take pads for the johnny home ? i’ve decided i’m going to take some wipes to clean myself after they took a ling time after 

    sorry for the questions i’m sure they’ll answer me friday but i don’t want to be there for a king time 

    sith having both cameras.the same day how does this work ? 

    will they ask about my symptoms . i have a list of all my health issues on my phone . i answered the collerectal nurse a few things but ivdint know how this works 

    gah thank you 

  • Hello and thanks for getting back to us.

    A cannula will be put in the back of your hand or arm and a mild sedative will be given.  I am afraid I do not know if it's the same as the dental sedation you had.  You will have the back of your throat sprayed to numb it.  They can do both endoscopies together at the same appointment.  We have information with pictures and a film about having endoscopy  and colonoscopy  on our website.

    I am afraid I am not sure if you can bring your crochet thingy in with you, but you could take it and leave it with your other things if you can't.  I don't think you will need pads when you go home but you could take a couple and use them if you need to. 

    It looks like you will have an opportunity to ask your questions and they may also want to know about your symptoms. 

    I hope this goes well for you and remember you may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Take care

    Caroline ,