# has anyone in the uk had a total colectomy for constipation ?



## Deepak Singh Dhillon (Dec 17, 2012)

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## Naomi889 (Sep 11, 2005)

You poor soul. Yes colectomys work well for some with constipation but they dont work for others. Different surgeons will tell you different things. Certainly there are surgeons who do this op for constipation. Please message me via the forum. Hang in there


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## TheOutlookChild (Sep 2, 2011)

Maaan. I know what you are going through. Ive read many cases of people having surgery for constipation and way more often than not they say its the best decision they have ever made. I am pretty sure I will need it one day too. I have also taken everything that there is and tried everything I can. I feel your pain brother.


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## Deepak Singh Dhillon (Dec 17, 2012)

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## Kathleen M. (Nov 16, 1999)

You might see about contacting this group in Glasgow that has been doing some research about this.

http://www.ncbi.nlm.nih.gov/pubmed/10971427

They may either be able to see you or get you in touch with the right person nearer to you.


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## mcmahon333 (Dec 23, 2012)

Hi mate i hope your well... I'm also a patient at st marks and have been severly constipated for almost 3 years now. I went through biofeedback with no luck and they also gave me a peristeen anal irrigation kit which i'm sure you got also had that did nothing.... i too wanted to have subtotal colectomy before i even got to st marks...... it is so completely mixed some people it works for and has basically cured them , but for others it can leave you still bloated in severe pain and you can just get constipated again or get incontience.

They are now going to trial me with a sacral nerve stimulator which you can read about http://www.ncbi.nlm.nih.gov/pubmed/20207638.

apart from that you have an operation called mace 




Ask me any questions you want mate......i know how shitty it is living like this.


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## Deepak Singh Dhillon (Dec 17, 2012)

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## mcmahon333 (Dec 23, 2012)

I was given a information leaflet that said sacral nerve stimulation works in 70% of patients with constipation and have found a few people who said it worked brilliantly...

1) http://www.medscape.com/viewarticle/756656_2 (look up on google : A Unique Approach to Severe Constipation)

2)http://gut.bmj.com/content/59/3/333.full.html

Yea mate i tried that resolor stuff and it did nothing for me at all...... I spoke to a surgeon called miss Vaizey who told me colectomy was out of the question. I spoke to her about my plans to go to thailand and have subtotal colectomy and she told me that i was "mad" and strongly advised me against it.....I'm a bit like you though i've read about so many people who've had this operation and it's worked out for.. so it does drive me mad not knowing what to do or who to believe...... there's only one way to find out I suppose............lol

I spoke to another surgeon called Mr antony dixon (www.bristolsurgery.co.uk) who told me that he does perorm colectomys for constipation but warned it is risky and it does not work for everyone....the cost was about £6500 so it wasn't as expensive as I thought it would be.

I'm going to UCL in euston to speak to a surgeon about this mace procedure........Did you ever hear about mace before?......I only heard about it on this website a few weeks ago....

1) http://rd.springer.com/article/10.1007/s10151-009-0506-2

2) http://www.ibsgroup.org/forums/topic/75032-there-is-hopemace-procedure/

I had a transit test done and all the markers where still there. nothing makes me go to the toilet except drinking large amounts of alcohol which is a powerful bowel stimulant..laxatives do nothing for me neither do enemas

It's strange knowing someone with the same problem I have from London....lol......what surgeon or specialist did you see at st marks?

keep in touch


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## Deepak Singh Dhillon (Dec 17, 2012)

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## mcmahon333 (Dec 23, 2012)

I know Ellie the blond girl i had biofeedback with.......I had the same intention of going to india also and she told me to avoid it........ thats mad you went and asked ellie about your intentions of going to india for surgery and I did the exact same thing....... She told me they might steal my kidney or something.....and that the hospitals there do not have the same standards as here...... are you from India or where you born here?

Whats going on with you at st marks at the moment? i think you should try and get a sacral nerve stimulator


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## Deepak Singh Dhillon (Dec 17, 2012)

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## Naomi889 (Sep 11, 2005)

Deepak do you want to delete some of your messages so I can PM you? I'd like to discuss colectomys with you..


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## Pixie29 (Jul 28, 2013)

Hi Deepak.I am new to this site but am happy that i have finally found someone in the same position as me in th UK....How are things?have you managed to get any surgery yet??for the past 8 years i have been messed about by consultants who just pop me on another trial med and hope for the best yet they never work!I have been on Fentanyl patch for 5 years also which is Morpine,i was put on it by a Gasterentarolagist!and now they want me to come off it,my only pain relief...i am in absolute agony everyday and my tum is distended like i'm 9 months pregnant everyday...i so understand what you are going through and feel i should at least be entitled to make my own decision about my own body as doctors are playing god with my life too!sure hope to hear back from you,and hope you are as well as you can be .


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## Sharon West (Aug 4, 2013)

Hi Deepak / Pixie,

I've just found this site and this is my first post.

I also suffer with Slow Transit Constipation and I live in Manchester, in the UK.

I have suffered with STC for over 3 years and have literally tried everything. Recently I was prescribed Reslor to try but with no joy, and to be honest after reading up about Reslor, i was very dissapointed that it had no effect on me whatsoever, apart from more stomach cramps and a constant headache.

I was seen for review at Salford Royal (Hope Hospital) on the 15th July 2013. My original consultant's name was Dr Lea, but after being informed that he had left the hospital for pastures new I was given a new consultant, Prof McGlochlin, and I have to see.....he's a great improvement, he listened to all my concerns and he advised that there was no use trying any other medications as they wouldn't work. I am now waiting to have a small bowel manometry on the 27th August 2013, this is to test my ilium and to check if it's still working. They will send all results to my consultant and at my next review we will discuss surgery options, and or including a colectomy.

I can't thank my new consultant enough, I just want to get the ball moving and get me sorted as soon as possible. My husband suffers with Crohn's disease and had to have an ileostomy back in the 1980's so I am aware how to look after any bag and would actually prefer to have either a colostomy or an ilieostomy if that's the way it has to go.

Keep pestering your GP's or Consultants because there are some Dr's that are willing to commit to surgery.

Hope this helps a little xx


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## Pixie29 (Jul 28, 2013)

Hi Sharon.Thank you so much for your reply it's been a god send!!! so you've had the same problems with docs and consultants saying that there is nothing else we can do but try these new trial tablets!i so badly want surgery as i know it's the only thing thats going to help me but they refuse saying sugery is NOT an option :/ so in turn we are left to try and cope in such debiliating circumstances!!! this new consultant you have is he definitely going to do the surgery??if so is there any chance that you could pass me on his details so that i could see him through the NHS,or is he private?...as i have had no luck what so ever with docs or consultants,they are just useless...i hope your havin an ok day...


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## Pixie29 (Jul 28, 2013)

Hi Everyone.I just want to ask,does anyone know how much it would cost to have a subtotal colectomy done private?as i would like to know how much the operation is?i have searched the net loads and can't find nothing!!! hope you are all as well as can be and that you aren't struggling to much


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## Sharon West (Aug 4, 2013)

Pixie29 said:


> Hi Sharon.Thank you so much for your reply it's been a god send!!! so you've had the same problems with docs and consultants saying that there is nothing else we can do but try these new trial tablets!i so badly want surgery as i know it's the only thing thats going to help me but they refuse saying sugery is NOT an option :/ so in turn we are left to try and cope in such debiliating circumstances!!! this new consultant you have is he definitely going to do the surgery??if so is there any chance that you could pass me on his details so that i could see him through the NHS,or is he private?...as i have had no luck what so ever with docs or consultants,they are just useless...i hope your havin an ok day...


 Hi Pixie, sorry for the late reply but I've not been at all well lately. I was referred to Salford Royal Hospital also known as Hope Hosptial through my GP, I think that's the only way you would be able to be referred as he works under the NHS. Are you local to Manchester?

My new consultant hasn't committed to the surgery but he has said that he feels a more radical approach to my care is needed. He then sent me to have a small bowel manometry which was completed last Tuesday. I am now awaiting a further appointment to discuss the results and/ or surgery. I have to say I cannot wait.... xx


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## BentNBroken (Aug 31, 2013)

Geez, this is sad how much we have to suffer&#8230; I had a hysterectomy in my late 20's and it was one of the BEST things to happen to me! But I had to get crazy approvals (i.e. see a lawyer and a psychiatrist), which was totally understandable because many women do change their minds&#8230;

&#8230;anyhow, I never would have guessed that something like constipation surgery would be harder to get approved for than a hysterectomy! 

I may have to go the lawyer route again if things get much worse. Hopefully this time (one would think) things should be much more clear cut&#8230; like:

Have you tried drinking enough water? (yes, I passed out and almost ended up in the ER after force drinking 5 gallons over a few hours&#8230; on a more "conservative" attempt, I force drank 3 gallons/day for several weeks with no improvement&#8230

Have you tried a diet high in fruits/veggies/fiber? (Does SEVEN to TEN pounds per day of fruits/veggies qualify&#8230;!?! No dice to that either!)

Enough exercise? (At one point I exercised up to 3 hrs/day for many months to rule that one out. I did weights, cardio, even those crazy stretching/yoga poses, the whole 9 yards; currently I've been completely sedentary due to the debilitating pain, but ya know what, my bowel function (or lack thereof) is NO DIFFERENT than when I did boatloads of exercise!)

I could go on and on and I'm sure lots of folks on here can relate. The crazy part is, Big Pharma/Medical takes advantage of people left and right and the times that Western medicine actually has a chance to do good, they turn people down. I just don't get it.


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## Marv72 (Sep 29, 2013)

I can't believe I've finally found people on the same wave length as myself..im a newbie here and have been lurking for quite a while but was so pleased to come across this thread that I just had to comment. I am in exactly the same position as you, no matter what I eat or drink nothing helps, I've taken every medication under the sun ,tried bio feed back,irrigation,enemas and so on and so on and nothing makes any difference to my bowels wotsoever. The last two years has been nothing short of a nightmare and I too just wish I could have a bag so I can get on with my life. I'm due to start prucalopride in November but not expecting good results. I no longer have a socia life as people have got fed up with me pulling out at the last minute,going on holiday is a dim and distant memory......I just want my old life back :'(


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## postmortem (Nov 11, 2006)

curious, why are doctors so reluctant to perform any type of surgery on people with constipation? i understand that there could be a lot of problems that could arise after the surgery, but i don't know living life with so much discomfort and so little options for relief is like not living at all.


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## annie7 (Aug 16, 2002)

oh i agree--you're right.

for over a year now i've been asking my gastros as well as a colorectal surgeon about surgery and they kept discouraging me, saying how risky it is, how very unpredictable gastro surgery is especially as compared to other surgeries etc etc. and the old "once we take it (the colon) out, we can't put it back in" etc. well, it (my colon) doesn't work--lol--take it out--please.

i have pfd as well as slow transit so they all wanted me to try biofeedback which i did this summer--didn't help much. and then end of june i developed a cecal volvulous. my ascending colon twisted 720 degrees, started swelling and was about to perforate. hubby took me to ER where they performed an emergency extended right colectomy.

the first thing i said when i came to was "why didn't they take the whole thing out--it doesn't work" . well of course i knew the answer--it was emergency surgery and the ER surgeon (who actually did consult by phone with my gastro both prior to and during surgery) just did what he had to do to stop the colon from perforating.

and i still have to take laxatives to go now even though i only have half a colon. that was the only way they could get me going again in the hospital--was with laxatives. otherwise, nothing. and i know the pfd is part of the problem here plus the remaining colon is also slow and troublesome.

and yes colon surgery can be very problematic .my body, not taking well to the surgery, sort of went into shock right afterwards. i couldn't keep food down, no bm's, was on IV's, had to have my ng tube reinserted (not fun), developed severe edema til finally they put in a picc line and put me on TPN. in the hospital a total of 16 days. the average stay for this type of surgery is 5-7 days. i lost so much weight from spending 13 days on the hospital ice chip diet that i had a bmi of 15 when i left.

now, post surgery, i've got scar tissue and adhesions to worry about.

but i know there are people whose surgeries went much better than mine so i don't mean to be discouraging at all--this was just my experience--not the norm. ive read plenty of surgery success stories.

and yes, i'm a bit tired of taking laxatives, still have a lot of pain and discomfort...and still going to keep asking about more surgery...

good luck everybody.


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## postmortem (Nov 11, 2006)

hi thank you for responding. Is it possible that if they had not waited til you had a perforation, the surgery would have gone better, for example the adhesion and such? Sorry not sure how these things work lol.


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## annie7 (Aug 16, 2002)

well, adhesions usually happen with any surgery--scar tissue forms, adhesions develop. which is why they start you up on physical therapy right away to try to prevent this if you have surgery like shoulder or knee surgery--a type of surgery that you can do PT on--you can exercise the joint or limb to break up the scar tissue (not sure i'm explaining this too clearly--lol--sorry)

with abdominal surgery you can't do exercises like that although after talking to my biofeedback PT about i it, did find out that if you have problems with adhesions from ab surgery you can go to PT and a specially trained therapist can give you a special type of deep tissue massage designed to help with adhesions. she told me many insurances don't want to pay for this--probably not mine--lol--but told me that if i find a have problems standing straight, feel a severe pain or pulling or develop a blockage etc i could ask the surgeon for a PT script.

i am currently going to a massage therapist (not a PT) who does this type of massage--paying out of pocket of course. and it does seem to be helping. my surgeon told me massage probably wouldn't help although he did say he had a patient who swore it did-- i thought i'd try it. thankfully i do not yet have any serious adhesion symptoms yet like a blockage . i just want to do all i can to keep problems from developing.

i do think that the physical stress from developing the volvulous did contribute to my complicated and long hospital stay. i was extremely ill when i went to the ER. i would think that if this had been an elective surgery planned in advance with me going in as a fairly healthy person it would have all been easier. and my age (61) might have been a factor too as well as the fact that i was already underweight to begin with from always having had problems eating due to nausea and constipation. and i have mitochondrial disease which may have complicated things too.


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## qeiane (Jul 31, 2013)

I know exactly how you all feel i have multiple sclerosis as well and my life is hell with my bowels...transit test they were all there had proctogram last wed....my dr said i needed a colostomy or illeostomy yet would not do it but would if i went private...that says it all...tried all the meds enemas there are. Even got prescribed s peristeen have a look its made by coloplast it may help you didnt with me sadly....im so fed up i too have no social life canr make any plans abd in pain bunged up 24-7....its a miserable life....i envy my hubby and kids two mins in and out of bathroom how sad to envy that


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## annie7 (Aug 16, 2002)

qeiane--so sorry. i do hope and pray that somehow things will get better for you. please do take care.


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## Daina Wilson (Oct 20, 2013)

hi my name is daina wilson i have also had every pescription conspation drug that is on the market i am fighting at the monument for me to have a colectomy aswell as i have got severe bloating and i cannot open my bowels for months at a time my gi culstant wants me to stick a finger up my bum to see if that will work and i have said to her that it will not work and that it would just make my back passage even worse i am still trying to fight to get the surgery because that is what i need i know what you are going through i am going through it myself i have asked london now that they have diganoised me to reffur me to a surgen closer to where i live as i just cannot keep affording it to go to and from london all the time if you would like to personal message me my email address is [email protected] i am having so many problems i need to sort this out now once and for all

i also like in the uk essex

Naomi889

Deepak Singh Dhillon


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## Deepak Singh Dhillon (Dec 17, 2012)

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## Sharon West (Aug 4, 2013)

Hi everyone ,

I've not been here for a while but i have news. After trying all medications my consultant said they would have to use a more radical approach. I was sent for a small bowel manometry test, which included a camera being placed into my small bowel via the back of my throat and through my stomach. I knew there was something wrong as i got an appointment for the week after with the consultant. We now know that I have a very abnormal small bowel which doesn't contract in the way it should do. My consultant said he hadn't seen any small bowel as abnormal as mine. He then went onto say that they sometimes use a very high dosage of Eurythimicin because some tests show that this antibiotic can sometimes kick start the gut into working again. However, in my case he wasn't expecting it to work but they have to dot all the I's and T's. So I have now been taking the drugs for the last 12 days with no results whatsoever. I have also had a sigmoidoscopy this morning and biopsy's taken. I'm not waiting for a further follow up appointment with my consultant to discuss my options. As my small bowel isn't working then I don't think a colectomy will help me but I am not prepared to be brushed off anymore, I am sick of looking like I'm 9 months pregnant and I just want my old life back xx


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## Deepak Singh Dhillon (Dec 17, 2012)

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## Sharon West (Aug 4, 2013)

Aww thanks Deepak 

I had the usual transit marker study which confimed slow transit constipation, so i have problems from the minute any food enters and then without sounding crude, I really struggle trying to get anything out. I've been using the piresteen anal irrigation kit which helps a little but I never feel empty.I've been suffering like this for a few years now but since I got my new consultant he's been sending me for every test needed. I'm not sure what's going to happen now, he did mention a loop ileostomy but it could also end up being a colostomy. How are you finding the temporary ileostomy? Has is cleared all the bloating that slow transit causes? xx


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## Deepak Singh Dhillon (Dec 17, 2012)

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