Intussusseption...need advice!!

Hey Fido thank you for your response.

I am sorry to hear that you are also going through this but I am glad you are finally getting somewhere with things. I am actually from the uk too just have really terrible drs where I live! 😣

Even if a problem isn't related to my intussusception whic being unable to pass gas isn't, they just blame it on that and tell me there is nothing they can do. I'm so tired of all the excuses!

I was diagnosed a couple of years ago via Colonoscopy and proctogram (I was dreading pooping infront of people the first time but it really wasn't too bad).

I have been having biofeedback and using an irrigation system for the last 18 months. I find irrigation okay, at first it was great but it doesn't do much for me anymore.

I can't take any laxative meds as I struggle with chronic migraines and have found that all the ones I have been put on trigger them terribly. This is something I really struggle with as my biggest problem is severe constipation.

A couple of months ago I had the Anorectal physiology exam and another proctogram. I agree with you, there really is nothing that could embarrass me anymore haha!

I've had quite a few other tests but they are related to bladder as my bladder has been damaged amongst all this.

When I was first diagnosed they sent me to a specialist nurse to start the biofeedback therapy and look into types of treatment. It wasn't until a year later that I found out the team had said i could have a laparoscopic ventral rectopexy with mesh but the nurse I had been sent to was so against the surgery she didnt tell me until I found out and then decided to not apologise but just tell me all the awful things about it. 

I do struggle with a lot of mucus even when I'm not pooping i pass it. 

So now I'm here, no surgery pending as I was never told I could have it. I haven't a clue what is going on and I don't know if anyone else does. I do have an appointment next week but I'm not holding my breath for anything inparticular to happen. 

How are things with you do you have a date for surgery yet? Xx

Hi again,

I am so sorry to hear what rotten treatment you have been getting. It is so wrong of them to say they cannot help you any further because obviously that is not true. I was told, the first time I saw the consultant, that surgery is the last option if all other treatments fail. I would ask your consultant why they have subjected you to all the horrible tests if they were unable to do anything to help you no matter what the outcome, I wonder how he/she would be able to justify all the tests and expense to the NHS if their intention all along was to tell you that nothing could be done - it makes no sense at all because it makes all the tests you have undergone pointless. Do you have an appointment with the consultant next week or is it your GP? If not your consultant, is there any way you can get hold of him/her? It is everyones right, by law, to ask for a second opinion if you would like one, so perhaps that could be your next step? I receive a copy of the results of every test I undergo, have you had the same? If not, you can ask for them and, also by law, they have to supply them. There is no way that you should be left like this indefinitely...

For me too, the irrigation procedure is helping less and less. I am very lucky that I have a wonderful GP but since my initial appointment with her when she ordered the colonoscopy she has not had any further input into my treatment (of this problem). The colonoscopy was carried out at my local hospital and after reviewing the results, the consultant, wrote to my GP and told her that she needed to refer me on to a specialist in this particular field of medicine. From then onwards I have been going to St Thomas' Hospital in London and have been under the care of a specialist nurse and a consultant, Except for the tests I have always seen the same two people which has made things much less stressful. Letters explaining my treatment and the results of any tests are forwarded to my GP and also to me, so I have known exactly what has been going on since the beginning. 

You cannot continue to live with this problem and in pain without them doing something about it. Consultants transplant hearts and kidneys and perform other miracle surgeries every day so telling you that nothing can be done to help you with a bowel problem is completely ridiculous. It does sound as if they are trying to fob you off and that is not acceptable. You definitely need a second opinion, preferably from someone at a different hospital.

As far as my operation goes, I don't have a date yet, I had my pre-op assessment and was told I would have the op within 3 months, 3 1/2 months later I haven't heard anything but I am not concerned as we all know that the NHS is underfunded and struggling to cope. The consultant won't know until he opens me up whether a resection or 'tuck' of the bowel lining will be enough or whether a bowel resection will be necessary, if it is the latter I will be scheduled for another operation as it will be major and I will have to stay in hospital. I am at the point of not caring whether it is either, I just want it sorted out - I am sure you feel the same.

You should be getting the same level of help and treatment that I am getting no matter where you are in the UK, you must have to restrain yourself from screaming at the top of your lungs. Do you have anyone to support you, husband, boyfriend, sister, mother or a best friend? Somebody that can go with you to your next appointment to back you up?

Don't give in to the thoughts that you are going to have to live like this forever, it will get sorted out one way or another, don't let them bully you into giving up.

xx

Hiya sorry for the late reply i havent been too well the past week. I hope you are doing okay.

Had my appointment yesterday with my consultant at the hospital and there was a lot of information to take in.

I have been offered an open surgery mesh rectopexy due to the severity of my intussusception it is very unlikely they will be able to do it key hole. This wont fix my rectocele so i have also been offered a keyhole mesh surgery to fix that separately. HOWEVER i can't have both I can have one or the other which is just like wtf. 

So I'm really confused now as I went in ready to force someone to give my surgery and now I have no idea how to make this decision.

My surgeon has been really honest with me about mesh and how it can be put in but it can not be removed as once it is in the body it fuses and becomes part of the bowel so if there are problems which currently mesh is in the news for this then means the only way to remove is remove the bowel. 

He told me to research the mesh myself so i can see the risks for myself and my mind is just in a spin.

Are you having mesh? Are you aware of these complications? I don't want to scare you if so but I would wamt to know myself if it was the other way around. There is even a netflix documentary on this mesh which just makes me just feel sick. 

I've also been diagnosed with something called Anismus from the proctogram so need to start treatment for that. Also the specialist thinks i have some sort of digestive disorder so need to get blood tests with my dr.

I always feel so overwhelmed after the hospital visits it's pretty draining.

I don't know how you are supposed to make such huge decisions like this. I'm lucky i dont have family, kids etc bcos that woukd be even harder decision if they were involved. 

Rambling now sorry.

Xx

Hi RachRoux,

My turn to apologise for the delay in replying, I haven't turned on my computer for days and days. 

Wow your problem is so much worse than mine, how you are supposed to make a decision about such a life changing op is beyond me, I have absolutely no idea what I would do. My intussusception is my intestine telescoping inside itself, I do not have all the horrendous problems that you do. Depending what they find when they open me up, they will either resection my bowel lining or book me in for a bowel resection which obviously is a bigger operation than the bowel lining. I still have not heard anything but I know how busy and overwhelmed the NHS is and my condition, although it has an effect on my quality of life, is not life threatening.

Have you posted anything else on this site? Maybe people that have had the procedures being suggested to you will be able to explain the pros and cons that go with them both which would help you to decide what to do.

Quite some time ago I had to make a decision whether to have some metal work removed or to leave it in. I was in discomfort but was worried the joint wouldn't be strong enough without the metal 'scaffolding'; After reading all the relevant posts on this site I decided to have the op to have the metal work removed and it was by far the best decision I have ever made. I realise that the decision you have to make it much more difficult and more serious than mine was, but other than discussing the situation with people that have actually been through it, I don't have a clue what I would do. 

Sorry to hear that you have even more problems and have to go through even more tests and prodding and poking.

Please stay in touch and try to focus on staying positive, easy for me to say, doing it is a completely different matter. If you can be in contact with others that have been or are going through the same thing it might help, there is nothing worse than feeling completely alone.

xx

I don't know how we are supposed to make these kind of decisions but like you say our conditions are not life threatening. It seems that you have been provided with a lot of info about everything which is great. I really wish that was the case throughout the nhs but they are so overstretched it is just great we have it in the first place. Its a good idea of yours to post on here to others who have had the surgery to ask for advice on making a decision and I think i might do that as I've tried to contact places like pals for info on unbaised informated on the surgery and they have no idea.

I am going to have to do the same as you did with your scaffolding decision and just sit down and go through lots if info and peoples reviews i guess and weigh up the pros and cons. In the meantime i an going to see if there is some kind of support group in my local area as that might help too.

Hope you are keeping well =)

Hi Fidonips15,

EVENTUALLY found the conversation between you and RachRoux and literally cried with relief! (and am still crying now with glimmers of hope, perhaps and maybes) You cannot begin to know how long I have sought yet NEVER found ANYONE, ANY ANSWERS just the most horrific road to my own decay. All because someone made a mistake, which led to covering this up. In doing so? A MUCH BIGGER MISTAKE WAS MADE. I had the most wonderful life. 3 years after getting married everything tumbled into a nightmare.

I have been left to suffer out of sight and mind with intussusception - large intestine is now pushing out of my body between 3 to 6 inches & Haemorraghing from back passage, left to worsen since 2009. My poor children have been devastated and damaged beyond belief to see big strong mummy crumble like this. The medication they put me on to simply 'mask' the pain has caused 11 strokes, brain atrophy & inoperable aneurysm. Told NONE of the reality - I had to read it in my notes. Distention several times daily makes my abdomen bigger and tighter than 9 months pregnant (except I inflate in minutes NOT MONTHS) this causes navel to split open & sides to bruise - it is horrific. I can barely eat or drink - much of it comes out of my nose. I have No care, support, anyone to talk to about ANY of it. I am getting weaker by the day with nowhere to turn. I know I have to head South somehow. Would you be able to tell me where you went re: Bowel Specialism Hospital please? It just MIGHT give me 'Somewhere' to aim for. I am Literally grasping at straws. I must live for my children, despite the medication I was put on (Which I managed to come off 6 months ago - Alone instead of in a Critical Care Unit as is Needed) giving me 2 'sentences' to the contrary. I am being denied Health & Human Rights here. Human Rights say I NEED a Lawyer. The GMC have urged us to give the details of two Drs. as unfit to practice. Without support I am too scared to do either! If you know of ANY network, society, charity Anything - that may make this so EASILY AVOIDED Horror that has taken my Life, for over a DECADE easier to stop in some way - I would be more grateful than you will ever know.

I Thank You SO much,

With Hope, Love and so much Light,

K x

Please forgive question re: Hospital, I saw when I re-read your post that it was the very hospital I had thought would be best for this treatment and intended to try and get there.

Now just to think on the logistics of where to stay. Daunting but must be done somehow.

kindest regards