Guest Writer - Jon

Life after surgery: it is not the end of the world

Hopefully this blog entry shows that surgery can be a good option for some people suffering inflammatory bowel disease (IBD). I write as someone who has suffered badly from ulcerative colitis (UC) and required surgery because of it. I had a colectomy at the end of last year and had an ileal pouch formed. I have been doing pretty well since the surgery. Before my surgery I had been coming across quite a lot of negative information relating to surgery, often from people who didn't need it or didn't have any form of IBD. I wanted to write a blog about how if you need surgery, it can be very helpful and improve your life.  

Of course every operation has risks. I am not saying that everyone should chose surgery over medical treatment. Surgery should be a last option not the first. Always talk to your doctor before making a decision. I want to show that the operation can improve your quality of life. It definitely did for me.   

I will attempt to give a brief idea of what my experience of UC was like before I had surgery. Through 2011 and 2012 I suffered very badly from UC. There were only a couple of months when treatment worked well enough allowing me to lead a normal life. The rest of the time I was either house bound due to an almost constant and often uncontrollable need to go to the toilet or sometimes having to spend time in hospital. I made the tough choice of having my large intestine removed after exhausting all medical treatment that I was prescribed, trying various diets, herbal remedies, supplements and positive thinking (as positive as you can be with UC). Previously I had been very healthy. Before being diagnosed with UC I had been in the process of training for a marathon and was taking the training seriously. About a month before the marathon I started to have problems with my bowels which seemed more than “runner’s trots.” These problems turned out to be UC.

I was very nervous about the operation. It is a big decision to make. It is a strange thing to ask to have an organ removed. It is even harder due to how often you can come across negative comments about it online.

Since having my pouch surgery I have travelled to the Giant’s Causeway in Northern Ireland, I spent two weeks excavating in Jersey (I study archaeology) and I have just returned from six weeks travelling in South America. While in South America I climbed a few mountains, hiked through mountain passes, cycled down mountains, hiked in jungles and went swimming in lakes and rivers. I did not have any major problems with my bowels while away. I was very careful about what I ate and drank. The only problem I experienced was when I needed to take malaria pills and these seemed to cause me to need to get up a few times in the night. I had no problems during the day. As well as travelling I have been going to the gym, swimming, cycling and trying Tai chi. I used to practice yoga a lot but have yet to get back into that properly.

I do go to the toilet more than the average during the day. However I have warning, control and I can hold it in. I do not feel this interrupts my day to day life. I do not keep a log of how many times I go to the toilet but I would say I average about four or five times a day.

I mention all of this to show that the surgery is not the end of the world. It has vastly improved my quality of life. Last year I barely left the house and almost missed seeing my sister get married. However this year a couple of weeks ago in Peru I was able to hike through mountain a pass at 4600 metres above sea level. Last year staircases often proved to be something of a challenge to me.

Deciding on having surgery is not something that should be taken lightly and I do not want to be misinterpreted as encouraging everyone with IBD to have surgery. Obviously not everyone with IBD requires surgery. If you are able to treat your illness with medicine or diet and changes to lifestyle then that is clearly the way to go. Surgery should always be the last option and you should always consult of doctor for the best course of action before you make any decision regarding your health.

However for some people like myself this is not the case. I felt I had exhausted every other option and that I could not keep living the way I was. I was existing not living. When it was first mentioned to me I was very against the idea of surgery. It terrified me. I thought it sounded like medieval medicine. “We don’t understand the problem so we will just cut it out!” This is not the case. Modern medicine and surgery is amazing.

I should warn you that the surgery is not easy and you will not feel better straight away. In fact you might feel worse before you feel better. The surgery was described to me as being similar to being hit by a bus. I was very weak and in pain after the surgery, but this does not last. I had my pouch formed at the end of November 2012. The first few weeks are hard but you notice improvements every day. These may not be major at first but things are going in the right direction and there is improvement. I went to visit friends for New Year’s Eve. I did spend most of the night sitting down and not doing much but I was able to visit people and there was very little pain from my wounds.

You are very aware of your stomach muscles and trying to avoid moving them as this is painful. This can be difficult as a lot of movement often involves these muscles. You find different ways of getting in and out of bed. This pain does not last.     

I know I mention some negatives involved in the surgery, and it is not a magic cure, but it can vastly improve your quality of life once you get over the initial stage. There is always going to be a period of recovery after any surgery. My quality of life is much better than it was before the surgery. I hope that is shown through me mentioning the travelling I have been able to do. Next on my list of things to do is start training for a triathlon…as well as getting back to my masters. 

Crohn's and Surgery Part 4 - What to Expect

This information is about the types of surgery that may be needed in the treatment of Crohn’s Disease. You may also find other Crohn’s and Colitis UK information useful, especially our booklets, Crohn’s Disease 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 planned or elective, 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. Smoking has been shown to be one factor that increases the risk of needing surgery again.

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 Crohn’s 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 the likely benefits and side-effects are. Your surgeon is also likely to explain to you about the complications that can happen as a result of surgery. Do 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 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.
3. 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.
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. In some cases 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. In other cases, you will not need a laxative but may be asked to have an enema to empty the last part of the bowel.
6. You will usually be given a pair of white support stockings to wear during and after the operation, and 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, where your condition can be closely monitored. Once you have regained consciousness you will be returned to the 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. Some people will also have a nasogastric tube (a tube in your nose to keep your stomach empty). 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.
Depending on the operation you have had, you may be encouraged to get out of bed and into a chair the day after, or in some cases, the same day. This is to help get your circulation moving. A physiotherapist may visit you to show you some simple leg and chest exercises.

Also depending on the type of surgery performed, some people are allowed to start drinking water within 12 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 type of operation and also from individual to individual. Most people stay in hospital for between one and two weeks. The average stay is about 7 – 10 days after the operation, although you may be allowed to go home earlier, and have any stitches or clips taken out at home. In general, hospital stays for elective or 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 pain from your Crohn’s, and, as you recover, should begin to feel a lot better than before the operation.

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 on not only the type of operation you have had, but also 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.

If you have a colostomy or ileostomy and a stoma bag, it will take time to learn how to manage it. Talk to the stoma care nurses if you have a problem or need more information. You may also find patient associations like the Ileostomy and Internal Pouch Support Group (0800 018 4724 www.iasupport.org), or the Colostomy Association (0800 328 4257 http://www.colostomyassociation.org.uk/) helpful.

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, and 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 depend on the operation 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. In general, following a resection you may expect to be off work for about four-six weeks; after an ileostomy, for about two months.

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 recovery, and is particularly important if you have had sections of your small intestine removed. Some people with Crohn’s have difficulty in absorbing fat from their food, especially after resections, and if you have had your terminal ileum removed you may need to have vitamin B12 injections. People with a stoma do not generally need a special diet, although it can help to take extra fluids and salt, and you may 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 Crohn’s Disease.

Sex and Pregnancy
Most people are able to resume sexual activity after surgery for Crohn’s Disease, 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 no reason for women not to consider pregnancy after having surgery for Crohn’s, although if you have a stoma a caesarean section may be recommended. See our booklet Pregnancy and IBD for more information.

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. Ostomy Lifestyle: 0800 7314264 www.ostomylifestyle.org.uk

You may find it helpful to talk 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.)