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Author Topic: Fistula following bowel surgery  (Read 3319 times)
Hobbo
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« on: March 02, 2012, 02:30:18 PM »

My partner has just undergone major bowel surgery, had numerous setbacks which lead to 26 days in hospital and the wound opening up and leaking up to 300 ml of fluid daily. He had a scan two days ago and was told there was a small fistula which the surgeon would prefer not to operate on but leave it in the hope it would rectify itself. The only way the leak can be contained is by having two stoma bags over the openings and emptying regularly. He has also a temporary stoma bag fitted.

I feel very helpless seeing him in such distress and wonder if anybody else has had a similar experience.
He will have to undergo chemotherapy later but obviously is in no condition to do this at present. Should I be urging him to get a second opinion or do we just have to hope for the best. It seems such a negative attitude given that he went into hospital initially on 16th January and was told 6 to 7 days max to get this sorted. Any advice or thoughts would be appreciated.
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Hazel
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« Reply #1 on: March 02, 2012, 03:14:26 PM »

Hi Hobbo
Welcome to the forum, there is a wealth of support and advice to be found here and i am sure that you will receive a response soon from the nurses and other forum members. As i don't have any experience of having a stoma i will leave it to others to comment but just wanted to say hello.

Hazel
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alisonhelen
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« Reply #2 on: March 02, 2012, 09:56:21 PM »

Hi Hobbo,

Your poor partner has really been through the mill hasn't he. A fistula is when a hole or odd connection appears between 2 closely connected organs like the bowel and bladder or the bowel and wall of the stomach, sometimes caused by infection, the cancer itself or just healing after surgery. I imagine that as healing after a bowel cancer op often takes months, the guidance I had from my consultant was 1 month for every hour in surgery, it is going to take even longer for not only normal healing to take place but also for the fistula to heal. Obviously one of the stoma bags is for bowel movement collection, the quantity produced will depend on how much and how well he is eating and drinking, if it smells very offensive, this could still be a sign of infection. The other stoma bag will be to collect and monitor the output of the fistula, hopefully this should be reducing. The best people to ask about your partners condition are the team looking after him, his consultant surgeon, his CNS nurse and stoma nurse, it may be a good idea to request a meeting with them to put you in the picture as to what is actually happening, what stage he is now and for you to ask any questions you may have.

I too expect that one of the nurses will come on here and answer in a more knowledgable way than I am able.

Keep us updated on his progress and I wish you both well.

Alison

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lilianwiles
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« Reply #3 on: March 03, 2012, 09:11:46 AM »

Hello Hobbo,
thank you for posting on the forum board, although I am sad to hear about everything your partner and you have been through with the treatment which was supposed to make him better and not worse  Cry

Unfortunately, even the best surgeons cant always predict exactly what is going to happen to someone while they are healing and recovering from major surgery, and it sounds as if this fistual may have formed between the bowel and and the surface of the skin because the wound perhaps became infected in some way in the early days following surgery. This can be quite a common problem - and not just for bowel surgery. The fistula (almost like a little tunnel from the inside to the outside) will be draining fluid that is a mixture of faecal fluid from the bowel, with bile salts and digestive enzymes that can make it quite acidic and a green colour, along with the natural mucous and serous fluid that is being produced by the bowel as a normal part of the healing process, and that would otherwise be coming out of the stoma. Fistulas often heal on their own, and it just takes time....... often over several weeks or months, in the same way as it takes time for the bowel to heal internally after surgery, as Alison described.

Once there are no other complications, like an underlying infection for example, it may be possible to put in a special plug to help it start to heal up. However, I suspect that at this stage, everything is still raw and inflammed, and although it seems harsh, it is actually better to allow this fluid to drain out as freely as possible, because otherwise there is a risk of it causing more problems with his health if it is artificially trapped inside the body.

The important things now then are to focus on getting the healing and recovery processes started!

Drinking plenty of water and maybe even some isotonic drinks if he is losing lots of fluid into these various stoma bags. Dehydration will make him feel tired, lethargic and can even make pain feel worse, as well as making it more difficult to fight the infection and maintain a good environment in the body for wound healing.

Light nutritious snacks and meals that contain good quality protein, vitamins and minerals are also essential as these are the building blocks your body needs for new tissue growth and repair.

Regular light exercise and fresh air, even when you feel very weak and poorly, is also an essential part of getting better. Sitting or lying still for long periods can almost cause a sort of stagnation in the body, and even just walking around the room, or back and forwards to the loo to empty the bags, on a regular basis, encourages the circulation and the breathing, which in turn helps the body to heal itself.

Keeping the stoma area and fistula area clean and protecting the skin to stop it becoming sore is also really important. Light, loose clothing are the order of the day and the stoma nurse should be able to help you if there are any problems with the area around the stoma, and also in finding the right appliances to use to avoid having to change them too often.

Finally, trying to change the way you both feel about what has happened, and thinking of this as a difficult but necessary step on the road to recovery might also help too. It is so easy to become bogged down in all the negative stuff when you are faced with such seemingly overwhelming challenges, but this can also tie you in to being unable to move forward - physically or emotionally/psychologically. This is a lot easier for me to write, I suspect, that it will be to do in practice, but perhaps it may be of benefit to try and find out if there are some local classes that teach mindfullness, or relaxation, that you and your partner could do together. Sometimes this can be really powerful in helping you to find the inner strength and motivation to be able to cope better and see other ways of coping with the challenges.

You might find some of our publications like "Eating Well" and "Your Operation" helpful, and they can be found on the website www.beatingbowelcancer.org if you have not already seen them.

Please do keep in touch and I am sure you will find lots of support and friendship here on the forum, for yourself and your partner.

With warmest best wishes, Lilian

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Lilian Wiles
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Hobbo
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« Reply #4 on: March 04, 2012, 10:51:45 PM »

Thank you all so much for your replies. I showed them to my partner and we both agreed how helpful they were. Coincidentally, he has had a better day today, appetite good and managed to do several short walks around the house. Not got outside yet as the weather has been awful but plan a little saunter down the street as soon as possible. It's just good to know we're not alone and I musn't allow myself to get bogged down with self pity. We have a challenge ahead of us, a big one, but our relationship has got stronger than ever over the last few months and we will get through this together.

I will let you know of our progress.

With many, many thanks,

Hobbo

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alisonhelen
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« Reply #5 on: March 04, 2012, 11:25:17 PM »

Hi Hobbo

As a bowel cancer patient I know only too well how relatives, partners and close friends often suffer more emotionally than the patient, once we get over the initial shock of diagnosis or further complications or spread, we know how we feel. We know the level of pain we have, or our levels of anxiety over our bowels, whether it be diarrhoea, constipation, fear of leakage, etc. We know how we are coping with the fear of cancer itself and our mortality associated with it. You as a partner will never fully be sure of how your partner is coping, whether he's being totally honest with you, or shielding you from his pains and fears. All you can do is be there for him, reassuring him of how much you care. Do take care of yourself, it's a long road he's on and you will need stamina to stay on it with him. Accept help from others, make use of someone visiting to have some 'me' time and you may get benefit from talking to a Macmillan counsellor about what has happened over the last few months.

Thanks for updating us and hope that with the better weather you will be able to get more exercise with your partner.

Best wishes Alison
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
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