Elective colectomy for UC

Hi Dawn, thanks so much for your input. It is nice to hear from someone who has a stoma for so long. Can i ask what issues you have had over that time? Also how often are you emptying your bag?

do you remember much about what it was like before? I really feel for you suffering so early.

I forgot to say, i love that you have named your stoma. I think it is a great way to encourage a positve relationship with it

Hiya Karen the only issues I've had are to do with blockage of the stoma which was mostly to do with the food I ate ,I cannot eat sweet corn,mushrooms,coconut any nuts ,bean sprouts ,everyone is different I just try avoid them now .....I love nuts as well haha ....I empty my bagfirst thing in a mmorning then probs in the afternoon then night time ,just depends on what I eat that day .....no more every minute rushing to the bathroom ...

The only things I remember about been iI'll was the horrific pain and constant diarhoea ....blood and mucus it was awful ....my illness was short compared to most but I lost half my body weight within three months andmy large bowel was so bad it just had to come out to save my life

Yeh Fred is my lifesaver ,no matter what the op did save me and I've had probs over the growing up years with boy issues and them thinking it was disgusting ,but i am very strong minded and its a case of don't accept the bag then you don't accept me x

PS Ihave had every thing removed aswell no rectum all stitched up now x

Hi Alison

thanks for the feedback. My eldest is only 2 1/2 and i have already missed so much because of this hell. I hate to think what i will miss over the next 5 or 10 years if i dont get it done.

the dr still wants to try more meds but i really would rather just be done with it. I am hoping i can find a surgeon that will do it as all my colonoscopies have come back as being only mild. I have a high tolerance for pain, and symptoms are full on. Maybe my system is very sensitive but there is certainly nothing mild about it.

i am very lucky to have a supportive hubby, although sometime i wonder if he is on,y supportive because he knows he will get more action in the bedroom if i am not always in pain 😜

 

Hi Karen,

It sounds like your mind needs to take the next step with this.

I would suggest getting a second and third opinion before proceeding to the final stage. Find professor level who specialises in the disease.

I wish you the very best.

Thank you. I am in the process of arranging to see another dr for a second opinion. It is certainly not a decision i am taking lightly and I dont plan on comitting unless i am 100% certain its what is best for me and my family. 

I'm sure you will make the right decision for you and your family love ,if you want to ask me anymore questions that's no problem I'm here to help x

25 years, wow! There is no way i could put up with it that long. It is such a cruel disease. I dont trust the new meds either and hate the side effects of the ones i have had. 

Please come back and let me know how you go. I wish you all the best for your surgery. 

Oh and 61 and 68 doesnt seem old to me, i feel like i should be in my 80s so maybe you're the younger one. x

That comment was also made by surgeon on some of the many many sites I have visited ! Yes I was joking yesterday with that person who is from ileostomy association that I would do daily post surgery update from hospital bed lol.....Prob will b in lot of discomfort early days but yes I will DEFINETLY update u on my progress. They are very helpful actually and u can arrange to c someone from there who has a stoma ....think most of them have...and

they will actually answer any ?s u may have .... U can go to Ileostomy association online and pick ur local area and contact lead person there. U

will probably get lot consolation and info with chat from them. Thanks for compliment re age...yeah I poss feel 100 today...am Still in bed and am  trying to gather up energy to go get showered breakfast and little bit housework lol.  MJ x

You are correct there Maryjo I used to go into the hospitals to sit with people who had surgery or were going for surgery ,I think its a great idea when people have the experience to help others I still do it now occasionally if the surgeons and stoma team think its needed ,but the stoma nurses are all lovely where ever I have lived so very helpful x

Hi Dawn....have u had urs for long ? I'm kinda dreading actual surgery but no it has to b done ! MJ x

Hi Mary Jo

I'vehad my ileostomy for 38 years now had the procedure when I was 11 nrly 50 :-D ...I'm sure you will be fine any questions pls ask me x

Thank u....from young age u barely remember much else. Don't think actual Ileostomy will bother me too much...just the learning process in dealing with it. Given choice I would rather not Hav any probs at all, as would all of us but that's not how our lives are so will try and make best of it. Yes thank u I will . That lady yest had hers for 44yrs. It's amazing meeting people who have had them for the greater part of their lives. At mo I'm knackered what with low blood count and effects of colitis and gurgling tummy ....life has got to b better after it ! X

Hi maryjo, I just wanted to check in and see how you are doing post surgery. I truely hope it has given you your life back. x

Hi Karen.....a month yesterday....can't believe it....I meant to msg u other evening and got side tracked and of course went out of my head. Feeling so much better thankfully....still taking it easy ......I developed small sinus or  hole seeping from perineal area...been having it dressed and it appears to be doing ok...Prob b another week or two b4 it is healed. The stoma itself is easy to manage...my stoma nurse says it is a beautiful stoma lol....am trying out different stoma bags at mo to find out which one I like...there r so many bag companies out there !! Tummy and butt area internally still tender.....stitches healing etc...Prob b another few weeks b4 pain reduction. I'm still taking pain relief....do NOT do pain....but all in all I'm pleased how it's went. I'm out and about being driven by my daughters husband and son as im to allowed to drive for another 2 weeks. I try not to over do it as I can get tired but to be expected with post surgery and age lol(61) but I manage to get a good wee bit done most days . Def avoid lifting etc...petrified about getting hernia...higher stats at 6-8 weeks as people r feeling better at that stage and over do things so I def will hav to remember that ! How's u ? MJ x

I am glad to hear you are doing well and feeling better. It makes me more determined to get the surgery done. My specialist put me on infliximab about 6 weeks ago as my last drug option. I has done wonders for my UC but the side effects are far worse than the UC so i will not be having another infusion.

off to see the surgeon in 2 weeks, fingers crossed he can help!

Hi Karen......drug wise the apart from the usual I went om Imuran but it giv me side effects and after reading up on it all the long term side effects put me off it.  I no they have newer drugs but I kinda wonder what they will do to the body in the long term ! I was reading article where a gastrointestinal surgeon said the same and she felt that a colectomy was a better option instead of the constant barrage of drugs into ones body ...especially when nobody knows long term of effects are unknown...these drugs r so expensive and pron the drug companies make a fortune. My husbands niece has uc and she gets the remicade periodically but she also suffers side effects of it and eventually she will hav to hav colectomy so Prob better going for colectomy sooner and pump less drugs into body. It is nice now not having to take my Asacol and steroids and asacol supps etc and changing the bag does not take very long and it's great being able to eat food and no cramps etc . The thought of the surgery etc is worse Prob than having the surgery but I can say at this early stage I'm glad I have done it. I now do not have uc 🎉🍸hav u been offered surgery b4 or is this first visit to surgeon ! Which Hosp in which city u been referred to ? MJ

I totally understand about the newer drugs. I really didnt feel comfortable using infliximab, but thought i should at least give it a go while waiting to see the surgeon. 

My gastro had mentioned that if the infliximab didnt work surgery would be my only other option, although he wasnt particularly keen. I get the impression he doesnt understand how much it affects my life.

i really hope the surgeon is willing to do something for me.

i am actually in australia. We do not have any sites like this one, hence why i joined. I will be seeing one of the countries best surgeons in sydney who only does colostomies.

 

Apparently the gastro r not that mad about one going for surgery....I read that some where but when it affects ur life so much it is better to Hav better quality of life....its short enough without being miserable and on constant watch out for next loo ! Well hopefully the surgeon will b more understanding and sympathetic. Am sure they Prob r as they c the state of some of the colons they remove ! 

Re the drugs my husbands niece complains of side effects of them and I have read about other people who say the same  but when one is ill with uc u would giv anything a try as the thought of having a stoma without much time for reflection about it is preferable ! It is such a final thing to do. It's something where u need to hav that time to be able to mentally adapt to thought of it but that's not always possible ! When it's an emergency u feel that u have had something stolen on u and it is then so traumatic!

Yeah this site is pretty good as r some of the American ones but think this is actually the best site on the net ! I think I hav googled most of them lol esp pre surgery.....the Americans r more vocal re most things. U could start up a similiar one over there !

Isn't the health care system pretty good in Australia,? I watched programme on it few times and I hav friend who lives over there and husbands relatives and midwife I no who went to work over Ther. I live in N.ireland..can't remember if I said that b4 and a lot of young people head over there for a year and some stay on. Everybody appears to love it that I hav come across ! I hav only ever spoke to one person who didn't like it ! 😊MJ

Hi. Was the show RPA? That is the same hospital that i would be having surgery at, one of the best in the country. The healthcare system is pretty good, my local hospital however is not so good. If you get treated as a public patient you can face lengthy waiting lists and get whatever dr is allocated to you, so you may end up with a general surgeon rather then one specialised in a particular area. As a private patient you can get in almost immediately with your choice of dr but it can be very expensive. I am going private so it will cost me $250 or about £500 for a consult with the surgeon to discuss the posibility of surgery. 

My appointment is on tuesday and being both excited and nervous my brain is turning to mush. Aside from the obvious, is there anything in particular you think i should be asking? 

I hope you are continuing to improve. x

Hi Karen..don't remember name of the show ...gosh that's expensive...private consults r not as bad here. We r fairly lucky here....I got referred to and surgery by specialist in the field on NHS He was very good and done by laparoscopy. Usually they r pretty good at explaining all to u and they should b at that price over there. Ask how soon r u allowed to eat..very important ? In my life . I was encouraged to eat food as soon as I was able to eat which was approx 4-5 hours after surgery and it does make a difference becos after the fast u get so windy and my surgeon made me promise I would eat at least couple mouthfuls at each meal. I had couple bites of toast and few mouthfuls of tea that night and ate small amounts at each meal the next day and by following day I was back eating normally. I do like my food. I'm not a big person but fond of my food. I can't think of anything else at moment.  Yeah I am..my wound on my perineal area still not healed but getting there. Managing my stoma etc is pretty easy. I sampled about 9 different companies stoma pooches and think I'm going for the coloplast drainable...not sure yet if it will b the one or the two piece drainable. I find they r easier to clean, no pan caking , no ballooning (all new terms u will learn when u enter this world ) They r grey in colour and very comfortable but u can get free samples from all the companies to sample to c which suits u best. I also use a ring round it as there is some leakage which gives me some skin issues ....as mine is not totally circular and I get this but the ring solves the problem. U soon get to know and understand ur own stoma and Ther is so much help on the online forums too with advice how to solve any problems. Please let me no how u get on and if u have any ?s please do ask me. Xx 😊 MJ

Hi Karen, I would advice you to discuss the position of the stoma really accurately  as my son was not happy with his as it got in the way of his jeans waistband so you could wear something that is in the right position so they can put the mark where it least gets in the way.

Also in this country they remove the last part of the lower bowel at some point as it is more likely to get cancer. My son didnt have this removed at the first surgery but at the second when he had the beginning of his reversal, I think its varies, look on line and ask your surgeon.

The surgeon and doctors when they were trying to save his bowel didnt say anything positive about the bowel removal and stoma formation  and my son was so in shock but since then he has realised that it has been a "cure" if you like.  fter all the lower bowel is a tube that stores waste food and where water is reabsorbed from the food. The body adapts and absorbs water and some vitamins further up instead.

He is normal weight again, eats what he fancies esp spicey food, has tons of energy, looks great (not pale and sweaty and sleep deprived) and is pain and drug free. He throws himself around the cricket field and tennis court and rolls on his side if necc so as not to damage his stoma. He eats mostly what he likes but cooks veg more than normally so they are mushy as otherwise they come out pretty much as they go in!

He takes extra vitamins esp vit B and drinks about twice the liquid or he suffers from cramp.

I know I have said it before but do make sure you are sent home again with blood thinners as DVT is a risk, another question to ask.*****

Lots of luck to you and your family, remember no more rushing to the loo and pain!!

 

Hi Sheila...re the blood thinners ....I had them in hospital but what is reason for them at home if u r mobile and ur uc has been totally removed following proctocolectomy.Curiousity ? MJ 

Hi Karen....Sheila is right re position of stoma. Forgot about that. I actually had mine marked by stoma nurse but on looking at marking that night I was not happy with it and got second opinion from second stoma nurse who actually moved it few mms down which I think made the difference. Reason why I queried it was it seemed to be nearly more in line with my belly button yet all the pictures had them slightly further down plus it seemed to be running in line with crease on my abdomen which I thought would have interfered with waist bands so it just shows to be careful with siting . I'm sure my wanting second opinion didn't go down well but I felt I was going to be the one who was living with it for x number of years so better be safe than sorry .😊 MJ

I agree about the mobility but my son was still very affected by his pre surgery disease so was 3 stone under weight,  muscles wasted from malnutrition and being bed ridden, he really was worst case senario. He did his best to move as much as poss but he was in pain too. Mainly because he was emergency surgery and v ill and still hugely immuno suppressed, after all he had perforated in 2 places and had been left all night without any care apart from being offered more pain killers. He was the opposite of pre arranged elective illeostomy!

His surgeon gave him a 40% chance of not coming through it.

He had also the last few inches of large bowel left and a mucus fistula so still had some disease and had asacol to reduce symptoms.

This is why we have complained formally to the hosp and also the Ombudsman as Rob should not have been left all night with a perforated bowel and his DVT was avoidable if he still had blood thinners and info about avoidence.

The last piece of colon has now been removed as part of his first reversal op, last one next month!!

He had his colectomy in Dec 13 and is now happy, healthy and eats like a horse and back upto his muscular, athletic build so we are all grateful that the disease is gone.

Hi Sheila...He really did have a bad time which was very scary for himself and yourselves...by description he was very lucky did come through it all. Yeah he definetly needed the blood thinners . It makes one shudder to think of him being left all night in that state. U do wonder what possesses some medical staff to ignore symptoms that are so obviously life threatening ! Thankfully he has it behind him and doing so well.

Remember my first hospital treatment with mine 26 years ago and I was pregnant....I was very lucky survived it.....the hospital staff were so ignorant of disease and treatment...fortunately I managed to get to one of the hospitals in the city where I received proper treatment so I can empathise with him. MJ

Thanks so much, at least as time goes on with this disease it seems that more knowledge is available, it does require  the NHS, which in general I'm so in favour of, to take responsibility and use common sense. My son had a very bad time but after all the worry and pain and anger he considers himself to be one of the lucky ones and I'm so glad he has come through it and his head is still straight!

The NHS has a push on since 2010 to reduce the number of people who die from a VTE after hospital aquired blood clots, upto 30,000 a year in the UK alone, our general hosp assessed patients on entry but didn't know what to do afterwards esp on discharge. So Rob came home with no written or spoken warning about DVT so didn't pick it up until he had a huge clot which is another medical problem he is having to deal with. The Ombudsman is currently investigating the perforation and delay into surgery and the DVT and lack of assessment, we know the latter is inexcusable but we probably will go to court as we think the hosp needs to improve in so many areas that we want to highlight this.

He came through and is alive but some of that was down to him being very fit and young not down to his care.

I would always research a hospital in the future to make sure they are a centre of excellence as second best isn't good enough.

Good luck to you.

Well, i am booked in at the end of next month. It feels strange saying this but I am very excited. The dr wants me to decide if i want a j pouch or a permenant bag. He has given me the phone numbers of some past patients for me to talk to to help with the decision, I am leaning towards permenant bag but still undecided. i go back in 2 weeks to make a final decision and do the paperwork. I am hoping to see the stoma nurses then too if I can line it all up.

I think my mum has been doing some reading on uc as well, she was pretty excepting of the idea this time around. 

 

Hi Karen.... That's good all is going well so far. U will feel so much better after. I no it's great....no more pain or discomfort and I can eat anything I want without having to think about whether I will have any after effects afterwards. I'm able to eat fruit again,have my yogurts and my kefir which is brill plus others tuff as well...but those r the 3 things which I loved and have been unable to tolerate in years.

Depending on ur chosen route :

Re the stoma bags I sent off to all the companies on Internet and asked for free samples and tried them all and have more or less settled on the one which will suit me best. I also was having some irritation problems round stoma and having read other people's stories decided I needed a barrier ring which has worked a treat. Emptying bag only takes me a few minutes ...I have got it down to fine art lol....I do not do any rinsing out of bag which some people do... I found it tedious and messy and time consuming .....one woman was saying on forum she has had stoma for 40 yrs and had tried all methods but just found cleaning around  it worked out best so I'm following her advice but everybody to their own !  ☺️ Forgot to say make sure surgeon leaves good spout on stoma...it makes for easier keeping of stoma and bag.....I had read that on few of forums but mine left good spout and it's easier worked with...the surgeons Prob all do but check with him or the stoma nurse. She prob knows what that particular surgeon does. 

Re the permanent or J pouch that has to be ur decision ! I went for permanent because some people reading from forums had different probs with pouchitis etc and also whilst u still have rectum there is chance of symptoms of uc . I did not want that plus they only have a certain life span and I did not want to be having any more surgery re it in x years . Age Prob has a bearing on it as well...in majority of cases younger people tend to think more of body image and older folk like their comfort plus being older with jpouch having a life  span I wouldn't fancy further surgery in my 80s lol ....I think Prob talking to other ex  patients and reading the forums will inform u enof to make ur own personal choice because u r the one has got to go for what is best for u ! ☺️

i can hardly believe I have my op 7 weeks nearly now and how well and how healthy I feel ! ☺️ U will have a transformation for the better when it's all over and done with and time does fly after. Also make sure u take all ur pain relief and make sure u have good pain relief for home as ur body heals much quicker and much better if u take regular pain relief. Do not come home on paracetamol unless u have a mega pain threshold! I came out on cocodamol 30/500 and I found pain intolerable. I contacted my gp and got long acting morphine and topped up with cocodamol and brufen in between if needed. I had epidural post surgery for 2 days then morphine long acting and topped up with short acting morphine which more or less did the trick . Check with stoma nurse or and surgeon pain relief next time u c them as its mighty important. All relevant at the time ! Also ur mum will b delighted when she sees how well u r in x number of weeks and able to b up and about healthy and doing what u want . ☺️ Keep us posted how alls going . Sorry this turned into an essay lol 😉 MJ 

All is not good, currently the emergency department waiting to see a dr for stronger pain relief. I hate having no drugs that work but makes me so much more excited about surgery. I think the whole town is here so i think i will be a while.

The surgeon said i would feel amazing at 7 weeks but after 6months i will look back and think "gee i felt terrible 7 weeks post op compared to now".

My husband asked me what the first thing i was going to eat that i couldnt. My answer was a pineapple cream sundae and a stiff drink. Although these foods are far from my fave I havent had them in 5 years. I managed to get an appointment with stoma nurse on the same day as I see the surgeon again so that should work out well.

I am neary convinced to go permenant bag. I dont care about the look, just want to be done with the UC and enjoy life.

Oh dear sorry to hear u r in need of it...I used cocodamol30/500 for my flare ups so hopefully u hav now got sorted out. I was at an ileostomy association meeting tonite and Ther was a lady there Prob in her  late 40s or mayb early 50s...not sure but she had j pouch from bout 1986 and she was doing very well with it. She has it long time...she must b one of the longer ones .She was saying she had her surgery in St Marks in England ..Think it is expert in field of these things. Anyway yes it is nice to hav foods to look forward to when one has t had them in years ! At least u will not hav to make two trips to Hosp. MJ

Hi Karen, there are still decisions to be made and it does seem to vary according to hosp and surgeon. My son was your age when he had his ileostomy and has nearly finished his reversal process, he will have final op which is reattachment in July. The first op involved removing the final part of the bowel to get rid of symptoms of UC and to prevent the risk of cancer and to make the J pouch. It was a short op and quite quick recovery ,final op is keyhole through the stoma scar. There are several sorts of pouches according to needs.  The John Radcliffe Hospital Oxford website is excellent as Prof Mortenson who is doing my son's surgeries, came from St Mark's Hosp London to set up the dept some years ago, they are the centres of excellence in the UK.

My son chose to have a reversable op as he is so sporty and body conscious so wanted the choice. He has said that if the pouch doesnt work out , though I don' t know why, he can always go back to the stoma as agreed by the hosp. At JR Oxford they say they have no-one in his situation who has suffered pouchitis! Remember you are young and you should heal well and some of the side-effects people suffer from are because they were older or the procedures in hospital are not so upto date. My son spoke to some people about the op organised by his Stoma Nurse and the latter was great at explaining the pros and cons which he found reassuring.

Good Luck to all.

Thanks Sheila. I have spoken to my specialist and he agreed for me a permanent bag would be best. As the primary carer of my kids i need to know it is sorted so we can get on with life.

I got admitted to hospital from ED the other night. My xray showed massive inflammation that hadn't been their previous. Will be having an urgent colonoscopy in a couple of hours as I may need a different management plan in the lead up to the op or I may need my op brought forward. Just 2 days/nights away from my family has caused chaos and not something i want to do to them again if I can help it. And I am missing them like crazy!

If i didnt have young children that depend on me and had concerns about the look of the bag I may of considered a pouch more that what I did.

I am so sorry you are suffering, it's a bast**d disease. The op seems the best thing for you now, I hope it goes well. Don't forget the stoma positioning and blood thinners!!

Enjoy the food afterwards, my son was eating chinese takeaway and pizzas delivered to the ward by his girlfriend after about 6 days, but then he was in over Christmas! So nice to taste some previously banned foods without worrying. But avoid sweetcorn it makes you fart!!

Good luck Karen I am glad for you that you were able to make your decision for surgery. Things can only get better for you and your family. Looking forward to updates on how you are feeling. 💐💐💐