Some 'specialists' are useless

[edwangy]

I suffer with chronic constipation, I'm sure it's due to severe narrowing of sigmoid colon and insusception, after several ct scans, procto gram and motility test, diagnosed last year. Also slow motility and diverticular disease. I'm in pain 24/7, can't sleep and feel exhausted all the time. I've seen 3 gastros who say they don't know why I'm in so much pain (to me it's pretty obvious) and 3 colorectal surgeons who say that surgery could make it worse. I know that if they removed the narrow sigmoid it would solve the problem, I feel I need to 'go' each morning, but nothing with come oue, somestimes stringlike poops but usually nothing, I'm now waiting for yet another 2 tests. This has been going on for 4 years andis getting worse but no doctors seem to acknowledge the test results, they've done absolutely nothing for me except pass me around the system. IMO they are all useless!

[Boxroad]

it’s hard when we don’t get the help needed, have you seen the you tube channel by Michelle Kenway? She has some very good videos on bowl movements constipation etc etc, do you know about the two fibres soluble and insoluble? I leant about those more on her channel, changing my diet helped a lot when I was very constipated and having pencil stools, I had a colonoscopy a couple of years ago and they said they could see I had been blocked up and the prep had moved it, they also found diverticulitis internal haemorrhoids and a couple of polyps.

I also found out that tap water was having a massive affect on my bowl due to the chemicals the water companies put in the water to kill bugs, my friend also had issues with his well due to all the chemicals being put on the land and washed off the roads into the water table, he had to have a new bore hole put in that went down a long way then a special filter system added, i then had a filter system put in my kitchen just for drinking water, when I change the filter it is bright orange.

I think the nhs has lost its way and if we need any comfort we have to do whatever we can ourselves, I have been on list to see gastro for three years had four appointments cancelled even after they sent me for tests and found something, when I chased it up I was told it was still in admin pile even tho the consultant had given me her PA number to call her as soon as I has given the bloods so she could chase up results, 4 months and still in admin pile, really!

I don’t think enough money is spent on researching IBS within the nhs, and I think the staff are more interested in clock watching and chatting to their colleagues.

I also have a kidney stone and when I went in for lithotripsy was told I could not go on the new 1.5 million pound machine as the operator had left and they had only trained up one person to use it, I used the machine 5 weeks before and the operator left the following week to go back to the Philippines.

[edwangy in reply to Boxroad]

Thanks for the reply. I think it's because the waiting lists for any treatment are so long, they pass you on to somebody else to get their own list down, then you go to the bottom of the list to see the next doctor. NHS well and truly useless!

[MyStar86]

personally I would have the surgery as they always have to tell you with any surgery that it could make it worse but otherwise you will spend your life trying to manage it and be perpetually stuck as narrowing cannot change once it’s narrowed it’s narrowed so it sounds like if you don’t have a motility disorder removing the narrowed part will be a big help. This is just my opinion as I’ve had lots of surgeries for endo gallbladder and bowel and they always have to say it can make it worse but you have to weigh up living in pain or take a risk and I always said for me personally the risk is worth it but that’s just my view good luck xx

[Jayjayvee in reply to MyStar86]

I'm interested in the remark about a colonoscopy clearing a blockage. I have colonoscopies every 2 years to check for polyps and passed a largish poop a while after everything else had cleared. I always feel extremely well for a few days afterwards. It does give me a chance to reset my diet.Edwangy, I wonder if you could insist on a meeting with a senior gastrologist to discuss everything. See if your GP will write a letter to support you.

[edwangy in reply to MyStar86]

Thanks for that. The problem is, they have refused the surgery up to now. My latest surgeon is sending me for 2 more tests and he said that they will have a case conference to discuss wether to operate. Don't know what I'll do if they refuse

[MyStar86 in reply to edwangy]

You have to fight for it, really push for it when you next see the surgeon say this is my life here and if this isn’t done then I can’t live like this so explain to me what will be done if this can’t be done so they know how serious this is to you that’s the only way they will ever go ahead. Good luck I really hope your next appointment goes well just go in there armed for a fight look on the internet about the surgery find anything you can to bring with you as back up. The surgeons are much kinder and better than gastros so I really hope once they know you are desperate they will reconsider xx

[edwangy in reply to MyStar86]

Thanks so much for that. I've told them I can't live like this, my life is totally ruined by it, hopefully they'll listen xx

[MyStar86 in reply to edwangy]

I really hope they do but the surgeons are definitely much better than gastros I wasted so much of my life with idiot gastros but surgeons have definitely saved my life and seem to care more and understand having someone’s life in their hands. Just keep pushing and say the risk of leaving you like this is much greater than any surgery because you cannot and won’t live like this 💓 good luck and let us know how it goes we are all with you xx

[edwangy in reply to MyStar86]

Thanks again. I'll let you know xx

[Orchid99]

I'm sorry you are going through this hell too. I have slow transit with rectocele and enterocele which is narrowing my large bowel and making stool even more difficult to pass. I've been suffering for over 5 years, take laxatives everyday and a motility agent. These don't seem to be helping as much as I need them too. I've seen a few Gastroenterologists in the nhs, all saying you have to live with it and manage through medication and diet. I then went private to a colorectal surgeon, as my life is so restricted, I can't go out to eat, I can't work, I have accidents and not to mention the endless bloating, gas and pain. He did mention a temporary ileostomy, of which I have spoken to people who have had this for slow transit, and they all have said they wished they had done surgery sooner, they have a better quality of life. I said I was going to try the motility med first to see if it solves anything and then go back to him. I've since had another appointment with him and he is now trying to go back on what he said, saying surgery may make me worse and to now try biofeedback and irrigation before considering surgery. The temporary ileostomy can be reversed and the way I see it, is why can I not try it to see if it does make a difference to my life. Right now I am miserable, I'm sick of fighting to get what's needed.

[edwangy in reply to Orchid99]

Yes, that' exactly the same with me. I think the surgeons waiting lists are so long, they will 'fob off' anything they don't see as urgent or life threatening. They don't seem to care about the constant pain or the fact our lives are totally ruined by this condition. I wish I could find a surgeon who will perform surgery, like you said, a tempory colostomy should be offered

[Orchid99 in reply to edwangy]

I had to do a lot of research to find a colorectal specialist that would be willing to offer surgery as an option, I am in a slow transit FB group and they are really helpful and have mentioned specialists they have seen, who have done their ileostomies.

[edwangy in reply to Orchid99]

Are you in UK? If so where about?

[Orchid99 in reply to edwangy]

Yes, UK. Suffolk

[edwangy in reply to Orchid99]

How did you find someone who would operate?

[Orchid99 in reply to edwangy]

I've had to go through my private insurance, but I spent time looking through all the colorectal specialist they had on their books, to see the experience they had. My nhs gastro, refused to refer me to a nhs colorectal surgeon, although the one I am seeing also works in the nhs as well as private. I've just had my biofeedback communication to book my first appointment and my irrigation samples will be here Monday, so I will see if it will make any difference to my situation

[edwangy in reply to Orchid99]

Thanks for that. Did you have your ileostomy done privately?

[Orchid99 in reply to edwangy]

I have not had an ileostomy yet, I have to do the irrigation and motility meds first. It will be private for the ileostomy, if it comes to that, as I don't belive the nhs will do it, or there will be a long waiting list.

[edwangy in reply to Orchid99]

Have they told you you need an ileostomy? What condition do you have? I didn't think that private hospitals would be equipted for such major surgery. I don't know of any private hospitals where I live up north that would do it. I wish I could find a consultant and hospital who would consider surgery for me

[Orchid99 in reply to edwangy]

I have slow colonic motility, two redundant loops in my colon and recently found out I also have a enterocele and rectocele.The colorectal specialist I spoke too, said a temporary ileostomy was an option to see if it would improve my quality of life, as I can't even work now because of this, let alone go out for a meal, holidays...normal things, that I should be doing.

[edwangy in reply to Orchid99]

That's exactly what I have, bendy redundant colon, severe narrowing of sigmoid, rectocele and cystocele, yet the surgeons I've seen are very reluctant to operate. They said it could make things worse, I told them things couldn't be any worse! just like you, I can't do any 'normal' things like eating out or holiday, I can't even do daily chores due to pain,lack of sleep and exhaustion but they don't seem to listen or care. I've suffered with this for over 3 years and have begged then to resection my colon,even colostomy,but they just won't listen. you're lucky to have found someone who will help you.

[NewEnglander]

I have slow motility - since my 20s - and prob before that. I'm 70 now. So that's 50 years. I now take a small dose of Miralax every day but it seems as though my system has gotten used to it. Try to drink water, but that's tough. Now I have bad hemerrhoids because of all the straining. I am set for a 2nd colonoscopy this week - dreading the prep like no other. I also have had 2 mild cases of diverticulitis. The 1st colonoscopy was 6 years ago "perfect colon" the doctor exclaims - 1 itty bitty polyp removed. So, there I am with little hope for the future. 2 years ago I had my gall bladder removed and that was a good thing. But I am not anxious to have surgery of any kind. I think if I could just get the motility under way I'd be fine - not one doctor has offered me meds except for Linzess which was violent on my system. I am in US.

[edwangy in reply to NewEnglander]

Procalopride is supposed to help with motility, has the doctor suggested that? I've tried it and it does work but it gives me painful cramps just like linzess does.

[NewEnglander]

colonoscopy Thursday. I hope for some answers

[edwangy in reply to NewEnglander]

Good luck!