Guest Writer - Daniel - Part 2

Me (Daniel Newall) and IBD Surgery Blog – Part 2 Surgery and Post Op

Day Before – I rang the number that I was given, and 12 o’clock the time I was given, to check that there was a bed ready for me and was told that I needed to be there for 2 o’clock that afternoon (they mustn’t think other people work!). So, after declining to get the bus which was suggested by the staff member on the phone, my dad came out of work to take me and I arrived on time at five to two. I was then left sat outside the ward for two hours and was then invited to my bed which hadn’t been cleaned yet. 

I then sat there for a further two hours before I was booked in. So as you can imagine I was quite annoyed! I already knew everything that was going to happen as my uncle, who has been some what of a rock for me despite him living in south Wales, has unfortunately had colitis since before I was born and had the same operation twelve years ago. I doubt I could have coped with the disease or the operation without him.

Day 1 - I wasn't that nervous beforehand, but the doctor that put me to sleep had had the same operation as me and even showed me his scars before sending me off - so that was quite encouraging and before I knew it I was off. I awoke in complete confusion and pain, with a nurse trying to explain how to use the morphine pump for pain relief, which I already knew so began pressing and I couldn’t keep my eyes open which she wasn’t happy about. I then went back to sleep and woke in the recovery ward with tubes in almost ever hole I have! 

After a few hours I was asked 4 or 5 times to get out of bed. I refused I was feeling sick and was still in a lot of pain! But eventually I cracked and said okay, after being bribed by the nurse by putting my surgical sock back on, so at least we had a laugh. This was short lived as as I began to attempt to move - I just couldn’t move properly and it took me about 15 minutes to get from lying down to sat in the chair. I was so dizzy and felt so terrible I just asked to get straight back into bed after it had been changed.

In all this confusion I had completely forgot that I now had the bag which needed to be emptied and changed for the first time. I felt so bad that I didn’t pay any attention to it and I didn’t really want to acknowledge the fact that it was there I guess. During the night I woke to find the bag was blown up like a beach ball so that kind of got my attention. During the day I was on the extremely powerful morphine pain killers but the wounds were unbelievably painful and I was on oxygen for most of the day. However a rather attractive nurse removed the catheter I had, so it wasn’t all bad news.

Day 2 – Day 2 just consisted of sleeping. Towards the end of the day all tubes and drains that were in me were taken out; the main drain in my left side hurt the most. I imagine that’s how getting stabbed feels as it was so deep, and left a huge, deep perfectly round hole right in me. After this I knew things were getting better, as I was sat out at the side of the bed and unbelievably even began to walk around, albeit just 5 yards and in immense pain, as I was now only on tablet pain killers. I was also eating and drinking, but just soup and water

Day 3 – I was now walking more - even going to the toilet, as now I had to empty my own bag. Also, after only 3 days, I was moved back on the ward from the recovery room.

Day 4 – Here I was changing my own bag for the first time with the help of the specialist stoma nurse. Also I had 3 other men with me on the ward one fresh out of a different operation (he had had his gallbladder removed). As I had previously had gall stones, and been told I needed the operation he'd had, we exchanged stories. He was on the morphine pump and was acting rather odd as a result - as everyone does. He later told me that I pictured a mad professor tying him a noose in the main doorway and heard a nurse calling him saying it was time. So this cheered me up a lot, along with a meeting with one of the surgical team who had to check the operation was only 4 days ago as he couldn’t believe how fast I was recovering and told me I could go home tomorrow.

Day 5 – Home!

The next week I had the IVC filter removed with a small procedure which involved a doctor going into the jugular vein in my neck and retrieving the filter designed to stop blood clots travelling to my lungs or heart. It worked as he showed me the filter about five minutes later, it contained around nine small clots. I continued blood thinning injections for a week then recommenced the anticoagulation tablets.

Five weeks later as I write this having just re-enrolled at university for the coming year I feel fantastic within my self - I know the colitis has gone. I have spent my time reacquainting myself with a old friend known as the PlayStation 3. The bag is at times really annoying and I don’t yet know the extent of the impact it will have on my life and whether I will have the reversal next year. I just plan to enjoy life again and try to do as much as possible. The operation was a total success; I recovered in a remarkable amount of time and who knows in a year I could be writing another one of these after the reversal.

Colitis and Surgery Part 4 - What to Expect

This information is about the types of surgery that may be needed in the treatment of Ulcerative Colitis (UC). You may also find other Crohn’s and Colitis UK information useful, especially our booklets Ulcerative Colitis and Living with IBD. Most of our publications are available from our website: www.crohnsandcolitis.org.uk.

What can I expect to happen before the operation?

If the surgery is elective (planned), you should have time to talk through the options with your health care team and to discuss the best way to prepare for the operation. It is important that you are as fit as possible before having the surgery. So, if you are seriously underweight you may be advised to take extra nutrients, perhaps in the form of a special liquid feed as a supplement to your diet. If you smoke, you will be advised to stop.

Exact procedures vary from hospital to hospital, but you will probably be asked to attend a pre-admission clinic for a health check a week or two before your admission. During this appointment a doctor or nurse will examine you and ask about your general health as well as your UC symptoms. They will take a blood sample for routine tests and may send you for other tests such as chest x-ray or ECG (a tracing of your heart rhythms). This information will help the anaesthetist plan the best anaesthetic for you.

A surgeon will meet you to discuss your operation and you may be asked to sign a consent form at this stage (or this may not happen until you are actually admitted to hospital). It is important that you fully understand what operation is planned and what are the likely benefits and side-effects. Your surgeon should also explain the complications that can happen as a result of your surgery. Do take this opportunity to talk through the details of your operation and to ask questions if you feel you do not understand anything, or would like more information. You may also meet a colorectal nurse, and, if you are going to have a stoma, a stoma care nurse, who will also be able to help with any queries you may have about the operation or your after care.

Once in hospital you may expect something like the following to happen:

1. A doctor will examine you and a nurse will check your temperature, blood pressure, pulse and weight. This information can then be compared with readings taken after the operation.
2. If you have not already done so, you will be asked to sign a consent form to confirm that you agree to the operation. If anything is unclear, ask for it to be explained. If you don’t want the surgery to happen you have a right not to sign the form
3. If you are going to have a stoma, the stoma care nurse will visit you again to talk through what this may mean for you and to make sure you have all the information you need. She may make a mark on your stomach where the surgeon will create the stoma.
4. An anaesthetist will visit you to talk about how you will be given the anaesthetic and how your pain will be controlled after the operation.
5. You may need to take a ‘bowel preparation’ (a strong laxative) the day before the operation. This is to make sure that the bowel is completely clean.
6. You will usually be given a pair of white support stockings to wear during and after the operation; you may be given a small injection as well. Both these measures help prevent blood clots in the legs.

What can I expect to happen after the operation?

Immediately after the operation you will be moved into the recovery room, or, in some hospitals, into the HDU (high dependency unit) so that your condition can be closely monitored. Once you begin to recover you will be moved back to a general surgery ward.

You will be given some sort of pain relief, perhaps through an epidural (a fine tube attached to your back) or intravenously (through a drip in your arm, into a vein). The delivery of the pain-killing drugs may be automatic, or you may be able to control it by pressing a hand-held button. You may also be given medication to control anaesthetic side effects such as nausea and vomiting.

There may be several other tubes coming out of your body, including a drip to provide fluids, a catheter to drain and measure urine, and a drain tube near the operation wound or from your back passage. Some people will also have a nasogastric tube (a tube passed down through the nose into the stomach), which is used to remove secretions (fluids) or gas that may collect in your stomach after surgery. These tubes will be removed over the next few days and you should be able to start taking painkillers by mouth if you need them. You may find your throat feels sore from the breathing tube used during the operation. Gargles can usually help ease this.

To help get your circulation moving, you will be encouraged to get out of bed and into a chair as soon as you are able – probably within a day or so. As you continue to recover, a physiotherapist may visit you to show you some simple leg and chest exercises.

Depending on the type of surgery performed, some people are allowed to start drinking water within hours of their operation; others, however, will be asked to wait until bowel sounds are heard and they have begun to pass wind. So it may be a few days before you can start taking fluids and you may need to build up from small sips to drinking normally. You will then be encouraged to start eating a light diet.

If you have a stoma, the stoma care nurse will show you how to look after it and how to manage your stoma bag. If you have any problems, don’t hesitate to ask for help.

Some people have found that a few days after the surgery they do not feel as well as they did immediately after the operation and can feel quite depressed. This is probably a reaction to the ‘shock’ of the operation and this experience usually passes.

How long will I need to stay in hospital?

This can vary quite a lot according to the type of operation needed and also from individual to individual. Most people stay in hospital for between one and two weeks, although you may be allowed to go home earlier and have any stitches or clips taken out at home or in an outpatients clinic. In general, hospital stays for elective (planned) surgery tend to be shorter than for emergency surgery, as people having emergency surgery are usually more unwell and may have a more complicated recovery.

How long will it take to recover?

When you first go home you will probably find that you feel weak and tire easily. You may not feel like doing much. On the other hand, you should no longer have the symptoms from your UC, and, as you recover, should begin to feel a lot better than before the operation.

If you have a stoma bag, it may take time to learn how to manage it. Talk to the stoma care nurses if you have a problem or need more information. Specialist nurses should also be able to help with advice about living with an ileo-anal pouch. Patient associations such as the Ileostomy and Internal Pouch Support Group (0800 018 4724 www.iasupport.org), or the Colostomy Association (0800 328 4257 www.colostomyassociation.org.uk), can also be helpful.

As time passes you will regain your strength and stamina, and will probably be able to return to your normal daily activities including sports and hobbies. Everyone is different, however, and how long this takes can depend not on only the type of operation you have had, but also on your age and your general state of health. During your recovery it is important to strike a balance between trying to do more each day and over-doing things. Listen to your body and only do as much as feels comfortable.

A gentle exercise program may help speed up your recovery and you will probably be given some advice on this by the hospital or your IBD team.

Most people are advised not to do any heavy lifting or housework like ironing or vacuuming for a period of time following their operation. You should not start to drive again until you feel strong enough and comfortable enough to control a car properly, including making an emergency stop if you need to. This may take several months. Your car insurance may not cover you if you drive before you are fully recovered.

When you can return to work will also depend on the operation you have had, your general health, and the type of work you do. People with jobs that involve a lot of physical effort may need more time off than those with less active jobs, although even sitting at a desk all day can be very tiring after surgery. On average, it probably takes about 2-3 months before most people feel able to return to work. Working part- time for a while, or only taking on lighter duties, can often help the recovery process.

How might an operation affect my everyday life?

Diet
You may find that once you have recovered from the surgery you are able to eat larger meals and a wider range of foods. Eating a balanced and nutritious diet should help your recovery. You may be advised to follow a low residue diet for a while: the hospital will give you details of this. People with a stoma or pouch do not generally need a special diet, although it can help to make a point of eating regular meals, and to take extra fluids and salt. You may also prefer to avoid certain foods. The hospital dietitian should be able to advise you. Our booklet Food and IBD also has further information on diet and Ulcerative Colitis.

Sex and Pregnancy
Most people are able to resume sexual activity after surgery for Ulcerative Colitis, although it may take a little time, perhaps several months, to recover fully. In men, operations on the rectum can occasionally lead to impotence. This may resolve itself – if not there are several aids and medicines which can help. There is some research to show that both of the main operations most commonly carried out for UC, but especially IPAA surgery, can affect fertility in women. Couples who may want to have a family after UC surgery should discuss this with their consultant. Doctors also usually recommend that women with a stoma or pouch give birth by caesarean section. (For more information see our information sheets Fertility and IBD and Pregnancy and IBD.)

Emotional Reactions
Everyone reacts to surgery in their own way and some people experience a range of emotions, both before and then after an operation. You may feel apprehension, doubt, acceptance, relief, confidence, a sense of well-being and perhaps even some disappointment. It is not uncommon for people with an operation scar or a stoma to feel depressed about their changed body image. This can be a time of worry for family members as well.

You may find it helpful to talk to someone about these feelings. Stoma care and IBD nurses can be an excellent source of support. If you would like to speak to a professional counsellor, check whether your GP has a counselling service. There may also be a counsellor attached to your IBD team or hospital. (See our information sheet Counselling for IBD for more details on how to find a counsellor.) Ostomy Lifestyle: 0800 7314264 www.ostomylifestyle.org.uk

At Crohn's and Colitis UK we have a confidential supportive listening service, Crohn’s and Colitis Support, staffed by trained volunteers with personal experience of IBD. Trained staff on our general Information Line can answer queries on any aspect of IBD. 0845 130 3344 or info@crohnsandcolitis.org.uk

We also have available a list of 10 questions to ask your surgeon based on those recommended by the American College of Surgery.