* Contraception
* Sexuality
* Pregnancy
* Chantall’s story
* Carolien’s story (with photos!)
* Elsa’s story

 

Contraception

Beginning with female contraception. With a stoma the pill is not 100% reliable as a protection against pregnancy and so it is better to choose another method of contraception. The pill is taken up in the stomach and intestinal tract and in people with a stoma, especially with an ileostomy, this does not happen optimally. Here are a number of contraception’s:

 

The NuvaRing

The NuvaRing, also known as the contraceptive ring, is a flexible ring which you wear in your vagina. You wear the ring continuously for 3 weeks. During this time, the NuvaRing releases a small amount of hormones into your body to prevent pregnancy. After these 3 weeks you remove the ring and you have a ring free week during which menstruation occurs. After this week you insert a new ring. The ring is easy to insert and remove and you can even make love or wear a tampon with it in.

 

The benefit of this ring is that the hormones which it releases are especially low. This is one of the lightest forms of contraception, but it is as reliable as the pill. For people with a stoma it is even more reliable because the hormones are taken into the blood directly in the vagina rather than in the stoma and intestinal tract. Another advantage is that you do not have to think about contraception every day, which is the case with the pill. Because the ring releases very little hormones into your body and in a uniform way, it can lead to lighter and shorter bleeding. You also hardly ever suffer from weight gain with this. The same as the pill, you can postpone menstruation by using several rings one straight after the other. Antibiotics do not affect the working of the ring.

 

Contraceptive patch (EVRA)

This is a patch which contains a layer from which a drug is administered to the body. If you use the patch correctly, it is just as reliable as the pill in preventing pregnancy. Each patch gives for one week an even amount of hormones which is taken directly from the skin into the blood stream. The amount of hormones that it releases is comparable with a very light pill. After 7 days you apply a new patch, and just like the pill, the fourth week is a stop week. You can also postpone menstruation by applying more than 3 patches (=3 weeks) continuously. You can stick the patch on your buttocks, abdomen, outside of the upper arm, shoulder blades and (lower) back. Showers, sauna, swimming, sports etc have no effect on the adhesive power or the operation of the patch.

 

 

Contraceptive injection

The contraceptive injection is an injection of a hormone which is also used in the pill. You have one injection in your buttocks from a doctor, which protects you for 12 weeks (3 months) against pregnancy. You cannot regulate your menstruation with the contraceptive injection. Your menstruation may be irregular in the beginning and over the course of time completely absent. If the contraceptive injection is used, it usually takes a half to a whole year before your normal cycle returns. The advantages are that the contraceptive injection is very reliable, you only have to think about contraception once in 3 months, the hormone dosage is constant and it has a favourable effect on blood loss and menstrual pain. The disadvantages are that you cannot administer the injection yourself, you normally have to go to your doctor for it, and it takes a long time until the hormones are out of your body and you are fertile again.

 

 

The coil

A coil is a small flexible plastic object that is placed by a doctor in the uterus. The coil can remain in place for 5 years. At the end of the coil is a thin wire which hangs from the cervix, with which the coil can be removed. There are 2 sorts of coils:

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The hormone containing coil
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And the copper coil

 

Mirena (hormone coil)

Mirena, also known as hormone coil, is suitable for women who already have children as also for women who have never been pregnant. It may be an alternative to sterilization of whenever other contraceptive methods cannot be well tolerated. It is a small T-shaped object which is placed in the uterus, and where it regularly releases a small amount of hormones.

 

This hormone causes the endometrium to enter a resting phase, meaning it is no longer produced, causing menstruation to be shorter, lighter and less painful. The mucus in the uterus also becomes thicker and tougher so that sperm find it harder to penetrate the womb. Because the coil releases the hormone directly into the uterus there is very little hormone required compared to the pill. It is preferable to insert the coil during menstruation. During this period the cervix is more open and it is therefore easier to insert.

 

Copper coils

The copper coil is also a small T-shaped object. Around one of the legs is an amount of copper. A foreign object in the body causes an inflammatory reaction in the cells in the area. The endometrial mucus reacts also to the coil, irritating the mucus. This makes the mucus unsuitable for the receiving of a fertilised egg. The possibility of pregnancy is slightly larger with the copper coil than with the pill. The first months after the placement, the menstruation can be more painful and heavier, and even cramps, back pain or intermittent bleeding can occur.

 

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Sexuality

Let’s just call the beast by its name: SEX. Do not worry; a stoma is no reason not to have a good sex life. If something is damaged during the operation it can of course be more difficult, but there are solutions. After the operation it can take a while before you are ready, both physically and spiritually, for sex, but that’s to be expected. Don’t worry if your sex drive lessens or vanishes in the period after the operation. If you have the equipment, your anxiety passes and you feel comfortable with your stoma, then your sex drive will return by itself.

Sex is a combination of 3 factors

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The psychological factor

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Physical factor

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And the relational factor

 

The psychological factor

Your body image changes so gradually that you don’t notice it, for example by aging. When you get a stoma and the accompanying scars your self image gets a huge dent, many people feel disfigured and unattractive. It is quite normal that it takes time to get used to the physical changes and that you feel uncertain in the beginning. It is therefore not surprising that in the period after the operation you do not need sex, but just intimacy. After sickness intimacy is sometimes more important than sexuality. Because the 2 are tightly related, many people avoid physical contact out of fear of giving the wrong signal. A distance can occur from this. Guilt feeling towards your partner can also play a role. You have the feeling that you can give him less than before. Your partner tells you that he finds you just as beautiful as before the operation. But do you believe that yourself? You yourself don’t like the bag, so how can he find you beautiful now? In the beginning all these uncertainties play with you. If you feel better in your own skin, and learn to accept your stoma, then you can also give these feelings a place.

 

The physical factor

In many operations on the intestines and bladder, they have to operate in the small basin, for example removing the rectum. This is the area beneath the pelvis, between the hip joints, the pubis and the coccyx. There are a lot of nerves there, and if the nerve fibres to and from the genitals are damaged, this can cause problems later. The lower that has to be operated on, the more chance for damage. Research shows that 45% of Ostomates suffer with sexual problems. But remember that it is said that 95% of the sexual experience is mental and 5% physical.

There are on average more sexual problems with a colostomy than an ileostomy. Especially when it concerns a rectal amputation. This is because the cause of a colostomy is often cancer, whereby more radical surgery is required and often chemotherapy or radiation occurs. An ileostomy usually causes less sexual problems, because these are often created after years of problems, for example with inflammatory disease. If the bladder is removed for a urostomy, there is also more chance of sexual problems.

A woman can then have a hypersensitive vagina or produce insufficient moisture (lubrication) during sex. This can lead to painful sex (dysparunia). Painful sex can also occur because the shape, size or elasticity of the vagina is changed, for example because the support of the rectum to the back of the vagina is removed, or by scar formation. It can also damage the nerves so that you have problem achieving an orgasm. The first few months you can also suffer from separation. Give it time; some people enter the recovery period after several months. Fortunately, there are enough solutions for these problems, such as (water soluble) lubricants, treatment with a hormone replacement, oestrogen cream and using a different position during sexual intercourse.

Some men have problems after surgery achieving an erection, this happening rarely or never. Certain nerves may be damaged during the operation. Some people rebuild the erectile capacity over time, but others continue to have the problem. This also reflects the extent of the surgery and your age. The smaller the operation and the younger you are, the better chance of recovery. The difficulty achieving an orgasm or ejaculation may result from nerve damage, although this is not so common. Fortunately there are all sorts of solutions. For example medication such as Cialis, Levita and Viagra, which work effectively in men with erectile problems caused by nerve damage. They have different effects; one works longer, the other faster. There are also penile injections, whereby you inject a liquid in the tissue of the penis. It is a good method (often working better than the erection pill) but less pleasant to apply. A vacuum pump is also a possibility. Hereby the blood is pumped to the penis, but it feels cold, it is a ‘mechanical erection’. Discuss this with your doctor. Masturbation by the partner or use of aids such as a vibrator may be an alternative or solution if you have erectile problems.

If you have a partner of the same sex, the removal of the rectum may cause a problem in the sexual relationship. Intercourse via the stoma is dangerous and is not recommended.

Naturally the scars and the stoma bag belong to the physical factor. This is something you and your partner will have to get used to. There is suddenly something strange hanging between you that cannot be placed on the bedside cabinet. The advice: take time. If one of a partnership becomes ill or undergoes an operation, it is always necessary for you to adjust to the restrictions or the consequences that entails. Fatigue is a very common complaint. If sex no longer happens, then it is an idea to make plans. This probably feels very unnatural and forced, but it can also have benefits, namely peace and relaxation during lovemaking.

 

The relational factor

During the period of recovery some people need to be held and cuddled, whilst another may need to be alone. Share your thoughts and feelings with your partner, so that no misunderstandings can form. You cannot read each others minds, and so it is important to ask questions and to talk to each other. Anger or anxiety can also play a role after surgery, which is very normal because you have a kind of mourning process, leaving your intact body and getting used to the new one. Remember that these sorts of feelings are often directed against those that stand closest to you. Sexuality is full of feeling about yourself, so don’t brood on them but discuss them with your partner, otherwise they can lead to sexual problems. Some people who have a stoma think” it’s my life that has something wrong with it; therefore I must solve it myself”. But that’s not how it works. Sex is something between two partners, so talk things over. And do not forget it is not only you who has to get used to the stoma, but also your partner. Do not confuse the concerns of your partner with rejection. Together, you will get used to the stoma bag hanging between you both.

 

Tell your partner when you are ready to involve him in the stoma bag, but also give your partner time to reach that point themselves. That can make it difficult: the process of you and your partner will hardly ever synchronise, everyone works things out in their own way. It is also an interaction between you both. If the person with the stoma is very anxious or moody, it may be that the partner has less desire in sex or finds it difficult to enjoy. And then if the ostomate sees that the other has difficulty with the situation, they feel less inclined. Partners can enhance each others feelings and then it’s difficult not to get into a negative spiral. Share your feelings with each other, also about sex.

 

If you are sick and get a stoma and have no partner, then you are more dependant on your environment. Single people always have a battle between the need for autonomy and care and support. A partner knows sees and feels when you need to have support and whether you are well or unwell. If you are single, on the one hand you can be over laden with well-intentioned help from family and friend, which you don’t always want. On the other hand, you notice that the help you do need, is not there, or it can be difficult to ask for it. A partner supports you through thick and thin because you have a life together and a future, so you don’t often have to ask for help. If you are single you miss the support, someone you can take your anger and sorrow out on, but also to share the good moments. You sometimes feel very alone. Friends and family, who stand further away from you, often do not want to tax you too much. You may soon feel a bore, whilst with a partner you can unconditionally whine, and really be yourself. Do not fear to ask for help, often you find that the people around you are happy to help. You don’t have to do it all alone.

 

The Dutch film: Alles is liefde

 

The Netherlands has more single people than ever before. The status of being single is strange enough if unwished for and is often seen as temporary. The desire for a partner, someone with whom you can share everything, is very normal, but do not let this longing for love overshadow everything. Belief that our personal luck does not depend on factors which are outside our control such as your good job, your car, your success and a partner. The luck sits within yourself. If you are happy within yourself, any eventual partner is an addition. Especially do not blame your stoma that you are single, other factors are always playing a part. If you do not have a relationship and you meet someone, when and what do you say about your operation and your stoma. That of course is entirely up to you. Use your common sense and intuition to find a good time. Although it is best to tell this at the start of a relationship, so that your partner suddenly has no surprises to come. You will feel relieved if you have talked about it. Just like the time it took you to get used to the idea of a stoma, so you should give your partner time as well. And whilst rejection is painful, it also happens to people without a stoma. Tell yourself that person was not worth it.

 

Tips

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Empty or change your bag before making love, which is safer and more comfortable.

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Do not fear that your partner can smell you, that is not necessary. If you are really worried, then spray a little perfume on your bag or light some incense.

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You can use a smaller bag, or use a plug with a colostomy.

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Do not be afraid of a heavy lovemaking session. The chance of the stoma material coming off is very small. And certainly do not think that sex will damage the stoma, whichever position you take, even underneath!

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Something sensitive can always happen, such as your stoma making a sudden noise during love making. This is best dealt with humour, just laugh about it!

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If you dislike it that your stoma makes noises during the love making, then put some romantic music on.

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If you have long love making sessions, then think about keeping a glass of water nearby; as you lose a lot moisture when you sweat.

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If you really have problems do not be afraid to talk to your stoma nurse or a sex doctor.

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There are nice covers for putting over your bag to brighten it up, for example, "Design your stoma".

Image source: top row first 2 Lydia, last 2 My heart ties.
Middle: Stomaatje, Ostomates and Design your stoma
Subject: also Design your stoma

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If you really feel insecure about your stoma bag, then in the beginning keep a nice vest on until you want to “show all”, or make love in dimmed light.

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Another idea is the special stoma belts: you can fold your bag in half underneath and you cannot see it any more! Ostomy belts can be ordered through the German site "stoma na und". Also via the Dutch website "Design your stoma". There are also some for men.

Image sources: top Stoma na und and Design your stoma

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A stoma and pregnancy

If you have a stoma and want a child, it seems at first sight perhaps impossible. Surely there is too much tension on my stoma through my growing belly? Can the stool or urine still get out? Will the birth be more difficult and is it at all possible to have a natural childbirth? Previously the doctor gave the advice not to become pregnant, you knew this but never thought about it. Fortunately nowadays we think a bit more positively about it. Naturally you will encounter obstacles, but there are often solutions to be found.

If you are in a reasonable condition, you can be reassured about getting pregnant, especially if the underlying reason for getting the stoma is removed. If the underlying cause is still being monitored, then this should be taken into account. Be aware also that with each operation adhesions can be formed, which can impair fertility. If you wish a child it would be advisable to sit around the table with your doctor, stoma nurse or gynaecologist for a pre-conception consultation (information before pregnancy). Here you can discuss everything; the medicines you swallow, heredity, the operations you have had, if you are physically capable etc. This can be taken into account during pregnancy and childbirth, or it could be decided that a pregnancy is not advisable. Most doctors advise a 1 – 2 year wait after an operation, so that the body can settle first.  

For people with a stoma the pregnancy duration, the birth weight and the condition of the baby fall in line with the national average. The risk of a miscarriage or premature birth is no higher than in people without a stoma.

 

A doctor would normally strongly advise against a pregnancy during an active phase of inflammatory diseases (Ulcerative Colitis or Crohn’s). The situation at the time of conception determines to a large extent the course of the sickness during the pregnancy. If the sickness is in a quiet time (remission) at the moment of conception, then it usually remains so throughout the pregnancy. If it is at that time enflamed, then the complaints normally remain during pregnancy or even become worse, which also brings risks. With people who have Ulcerative Colitis there is a 50% chance that the attacks (inflammation and cramps) will increase, for people with Crohn’s this is 25%. The attacks can be fought well with conventional medicines, which do no harm to the unborn child.

Some things apply to all pregnant women, whether you have a stoma or not. Firstly you must have a balanced diet, sufficient fluids, vitamins and minerals. A child is literally the mirror of the healthy living and eating pattern of the mother. Extra folic acid is also important. If the last piece of the small intestine is missing then it can be less well absorbed. It is important that this is checked in your blood. Included in this study are things such as iron, protein and vitamin B12, which are also very important. During pregnancy there is often talk of constipation through the reduced peristaltic of the intestines. This is due to the increased amount of progesterone (pregnancy hormone) and because the intestines come under pressure from the growing uterus. This is normal and can happen to every woman. What can happen to pregnant women with a stoma is an obstruction of the bowel. Hereby please always consult your doctor or stoma nurse. Food is often the cause and irrigation can help. Often it is a pinching of the bowel. A tip is then to lie as much as possible of your left hand side (for an ileostomy), or on your right hand side (with a colostomy) so that the uterus can move a bit. In extreme cases you can have a period of a liquid diet.

 

In women with a urostomy the ureters are not in the usual place behind the abdomen, they lie more forward and exit in the stoma. The growing uterus cannot pinch the ureters. If a woman is pregnant she produces more progesterone. Through this hormone the organs become much softer and nothing can be trapped in them.

Because the abdomen becomes rounder and the skin tighter, you will find the stoma materials easier to fit. Only if your belly is so big that the stoma is no longer visible, is it difficult. A mirror can then offer a solution and you can bend more or lie down during changing. The shape of the stoma also changes as the pregnancy progresses. The stoma is bigger, it stretches. Hereby you will need to increase the size of the opening of the base plate in order to prevent leakage. Sometimes you even have to change to a different base plate with a larger diameter. Some women have trouble with itching; this is because the skin is stretched. Very difficult but nothing to be worried about. Do not worry if your child kicks against the stoma, it cannot break. It can however be a very strange feeling, as if something is pulling on the piece of intestine.

Many women prefer to use a support band to support the stoma. This is an elastic band, available in different widths and lengths. A support band is probably wise to prevent a prolapse or rupture. A prolapse is a protuberance of the stoma, it is as if it was pushed out of the abdomen and is larger and longer than normal. This usually resolves itself after the pregnancy. Also, in most cases your stoma nurse will help to carefully push it back. With a rupture (also called parastomal hernia) a part of the intestines comes forward instead of behind the abdominal muscles. This is visible because a bulge appears next to the stoma. Because your belly becomes rounder and is under tension, you can, if you have a large scar on your abdomen, have problems with this. Especially if it is not a very old scar.

Despite the stoma many women still manage to have a natural birth, although a home birth is not advised. If there is talk of fistulas in the area around the anus and vagina, then there is often a caesarean. Also with any incisions you should take fistulas into account. Sometimes it is wise to cut on the right hand side, instead of the left where it normally is. Also if the anus has been removed, incision is wiser. It can prevent the risk of tearing. It is better to wear a support band during childbirth, because of the tension on the abdomen causing by bearing down. But if you press hard (and you actually do that automatically) then that pressure is on the stoma as well. During the period after childbirth your abdomen can still be “blubbery” and you can get leaks. Therefore it is very important to do abdominal muscle exercises. The abdominal wall can be viewed as a kind of elastic which is very stretched out during pregnancy. After the birth the belly slowly regains its own form.

If you use heavy medication, it is wise to consult with your doctor whether it is permissible to breastfeed. Some medicines occur only in small amounts in mothers milk, but others completely (and thus in the baby). And with some drugs it is yet unclear and only the future will show if they can be safely used during breast feeding. The milk production can reduce or even cease during a flare up or inflammation of Crohn’s or colitis.

 

Chantall’s story:

“I have suffered from Ulcerative colitis since I was 19. For years I had little problem from the colitis, until I got a full time job with a lot of stress, which was when the problems began. When I was 28 I became pregnant, and at that time I didn’t have a stoma. The pregnancy was not fun; I had to take suppositories after the 6th week. I had to have a caesarean because my daughter was a breech birth. During the caesarean they left behind a small piece of placenta, which is normally very rare, and it is due to this that everything went wrong. 3 weeks after the birth I had a curettage. After this I had a heavy fever and was admitted to hospital. I received a course of antibiotics, to which I reacted very strongly, particularly in my intestines. After many doctors and hospitalisations it was concluded that the only solution would be a stoma, as medicine no longer helped. Eventually I was operated on in October 2002 and my whole large intestine was removed, and I was given an ileostomy. Soon I felt much better and I suddenly had energy again to do nice things. In March 2004 I became pregnant. Exciting, as this was the first time for me with a stoma. I had hardly any problems with my stoma during the pregnancy. I only had a leak a couple of times, but did have a bit of problems with adhesion of the base plate in one particular place. I was afraid of having a hernia though. To avoid this I wore a support bandage made by Eakin, which I felt gave me a lot of support. In consultation with the surgeon and the gynaecologist, we decided to try a natural birth, if the child is lying correctly. There were risks with a caesarean as the doctors did not know precisely what “my insides” looked like. Ultimately I was 8 days late and the pressure on my abdomen was very strong, as we previously discussed. I wore the support bandage during the birth. I felt as if there was not as much pressure on my stomach during the pushing, and if I pushed wrongly then I felt it immediately. I even changed my base plate between the labour pains. Ultimately I gave birth to a healthy girl: Kim. I was the second pregnant woman in our hospital and I noticed that there is very little information about pregnancy with a stoma on the internet and in leaflets, hence I put my story here.”

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Carolien’s story :

"I have thought for a long time about writing a booklet about my life with a stoma. There is a lot to be found on the internet about this, but not everything. I also often found negative things about this, but it dealt with a problem people had. I have so far (touch wood) not much to complain about. But there is one subject where there is not much to find, stoma and pregnancy. If you go looking you usually get no further than the sentences:

• It is advisable to wait for a year after a stoma in constructed before pregnancy.
• The stoma may prolapse, which can be repaired with a simple operation after the birth.

And then it all stops. I am curious and want to know if it looks strange, such a huge belly with a bag. How do you empty the bag if you have such a big belly? All sorts of simple questions to which you cannot find the answer. I thought: “perhaps it would be nice to keep a small notebook about how the pregnancy with a stoma actually goes.” That’s why I decided to write it down. The only problem at that moment was that I was not pregnant. Ha ha, well that was funny, wasn’t it? We, (my husband and I) would love to be, but unfortunately you don’t completely have nature in your own hands. Well then, I shall first of all begin with a little piece of history about myself and how it happened that I have a stoma.

My history

My whole life long I have had problems with sensitive intestines. Especially when something exciting happened, then it worked immediately on my intestines and I had to go first to the toilet. When I was 17 my complaints became much worse, a lot of pain, I noticed that I occasionally had mucus in my stool but did nothing about it. Until one day there was blood in it, an alarm bell went off to me and I thought: “This is a good reason to go to the doctor.” When I had told him my story I could see by his face that this was not a good sign. He wanted to do a small investigation straight away and take a biopsy and grow a culture from this. He had already seen something, because he also went to make an appointment with an internist.

A few weeks later when I went to my appointment with the internist, this man said that I could have Crohn’s or Ulcerative colitis. In order to check this out he did an investigation, which showed I had ulcerative Colitis. I had never even heard of this before and now it appeared that I had a chronic bowel disease. Help, now what, because I will always have it? I was given medication and had to remain under treatment of this doctor. The first year the illness was quiet, but then I began to get more and more problems. A lot of abdominal pain, diarrhoea, and often going from one drug to another. I no longer felt comfortable. A few years passed wherein I kept going until the time came I really couldn’t cope any more, I cramped from the abdominal pains and I virtually lived on the toilet. Intestinal investigations made so sense, as it was all so inflamed that there was actually really only one solution to restore a decent way of life. I already thought that it would be best to do away with the rotten intestine, I had nothing but problems with it and I couldn’t hold any food in it any more. Before the first operation I had made some photographs of my stomach with the text next to it” beautiful from outside but ugly inside”. Then after the operation, another photo with the stoma.

After the first operation they had removed my large intestine and placed an ileostomy. The sigmoid and the rectum were left in place for a possible reversal in the future. This last piece was also inflamed and the internist hoped that the last piece would be a bit quieter now that nothing came along there any more. I was also given drugs for this, but of the drugs I had swallowed over the last few years, only the side effects worked. I already felt a bit better once the largest piece of diseased intestine was removed. My husband, then my boyfriend, and I moved in together and then married. We wanted children so we went looking for information about stomas and pregnancy. We had been married for 7 months, and I had not hoped for it so soon, when it appeared I was pregnant. We were over the moon. But at the same time things were not going well with that last piece of intestine. I had cramps and bleeding. Meanwhile we had also been back to the internist and had more or less decided to do an intestinal investigation, and if it did not look good, then it would be better to also remove the last piece.(I knew then that I was pregnant).

It could have been many different factors, but perhaps also there was a fault in the cell division. Our happiness was short-lived, because after a 7 week pregnancy I had a miscarriage. I month later I had the intestinal investigation and it appeared that it definitely did not look good and actually it should be operated on as soon as possible. Two months later, it all happened, the sigmoid and the rectum were removed. I found it a strange idea that I had no anus any more. For the first few weeks I had sewn together buttocks and I often looked at myself in the mirror and wondered if it would all turn out ok. Finally it healed nicely and I have a long smooth buttock scar. I am finally clear of that disease and no longer have to swallow medicines.

Pregnant Week 4

Whilst I believe it, I dare not yet be very enthusiastic. Last Friday I was one day late and something inside me felt strange. I still had a pregnancy kit in the house, so I used it. It won’t do anything, I thought to myself or else it was perhaps still too early for a test. Well, first one indentation appeared and there I can definitely see a second. Unbelievable. Well, perhaps the test is faulty. I went to the chemist to buy another test kit and did it that evening. Together with my husband, we stood over it after we had immersed it in the urine. Well! 2 dashes. The test is positive. That means just one thing.

WE ARE PREGNANT !!!!

It is still very early and also I have the feeling that my menstruation is at hand. I am not so happy, but I try to think positively. Everything is all happening at this moment in the uterus so that it will stay there. I also have a lot of brewing in my bag, which could be the symptom of being pregnant. Your intestines work more sensitively. Furthermore, I am soon cold, even though at this moment (June) it is summer heat. I also have a regular low back pain, and occasionally I feel a pressure between my buttocks near the scar. The standard symptoms are nausea and sore breast, which I have no problem with. I am terribly afraid that I am still unwell. The problem is that you just have to wait. Nobody can tell you what you feel is good or bad. It is different for everybody.

About 1 month pregnant.

 

Pregnant week 10

I am now a few weeks further on, this week I am in my 10th week. Pregnancy ailments are now also present. My breasts feel like melons (even though I don’t have much) and nausea often also plays a role. I am extremely tired and lifeless. Fortunately I am now on holiday, so I can do things quietly.

Last week I went to the midwife for the first time, and told her that I have a stoma. She had never had a pregnant ostomist before and wanted to discuss it with her colleagues to consider if she should take care of me. I thought it could happen, but still had my doubts and made an appointment with the stoma nurse in order for the one to inform the other. There are not many young women who are pregnant and have a stoma. Many women want children but perhaps still have a piece of intestine that is still diseased and/or still use medicine. In general you can become pregnant with a stoma and become well rounded and big without any problems. According to the stoma nurse you can just be guided by the midwife and just come a bit more frequently to the stoma nurse for checks, provided there are no other complications. The stoma nurse showed me a few photos showing a pregnant stomach with a stoma. Well, that is something you are most curious about, how such a big belly will look like with a bag. I was very curious about this. Because if you look on the internet, all you see is round healthy bellies.

She asked me if she could also take photos, so that they could follow the course of the pregnancy. Well, I was happy with that. The first one she took straight away, there is not much of a round belly to see. Next week we will have a scan, which I find exciting. For the first time there is real evidence of the pregnancy. A few days later the stoma nurse called me again, she had given the internist extra information and it would be sensible to make an appointment to take things further.

This week I had problems with my intestines, a little cramping feeling in my stomach. The strangest thing of all was that I wanted peanuts, and I can tell you, I never normally eat them. I shouldn’t now either, as I lay awake all night with cramps cause by obstruction of the stoma. I don’t like coffee any more and I only have to smell something nasty and I start to retch. In a number of booklets it describes how you already start to get a bit thicker but that is normally to do with the swelling of the intestines due to hormones. I have lost a lot of intestines and I have a little bit of rounding, but I can see that the stoma is slightly larger than before. Something will still happen there.

The echo

At 11 weeks, we made a scan. That was very exciting. We were both very nervous. At first it was difficult to find my uterus; it lay further to the rear and is probably because some things are missing from my abdominal cavity. Then came an image, first a darker stain, the placenta, and then two small white balls: Wow, our baby!

The echo in week 11

 

It is now quite real, I am pregnant and there is a living person in my belly. We can see the heat beating and something jumps up and waves a tiny hand towards us. This is truly a miracle. At first I did not want to see inside my own abdomen. After having had so much trouble with this stomach that something beautiful could also grow in there. The midwife measured the baby and it is correct with the number of weeks, 11 weeks and about 4cm. I have an appointment with my internist and he thinks it is wiser for a gynaecologist in the hospital to care for me. They can easily consult with each other if it is necessary. So we do, and I have an agreement with the midwife that I can always have contact with her if I have any further questions about the pregnancy.

The pregnancy is progressing well; I have few complaints and slowly gain a belly. The fatigue has also gone and I monitor the stoma (it looks fine). I try to moisturise my stomach twice a day so that the skin, especially the scar, remains subtle. I use massage oils from Etos designed for the pregnant stomach. It does not stay tacky on your belly. Of course I do not use it under the base plate. I can now feel the baby move, it first began with a couple of movements, which felt deep in the stomach like air bubbles moving through your intestines. Later this feeling became clearer and more regular. I feel my belly is thickening, the stoma grows further to the right, but otherwise I have no problems with it. I am still unsure if I will go on leave 4 or 6 weeks before the birth. Because I am a playgroup leader, I have to bend a lot so it seemed sensible to me to stop 6 weeks beforehand.

The second echo

At 20 weeks everyone has a second scan, so we did too. There was no reason to have more frequent scans. At 20 weeks you can often also see the sex of the baby. I was secretly curious about what it would be, but my husband preferred it to be a surprise. And I don’t just want to know, but tell everyone as well. So it remained a surprise. On the scan there was a real little baby to see, it was examine to check that the baby’s back was closed and if the upper lip/palate was closed properly. This was all clearly to be seen on the scan and everything looked good. You could even see the baby drinking tasty umbilical fluid. Very nice, you suddenly see your child, our child. I suddenly think, I am not going to become a mother, I already am one.

About 6 months pregnant.

 

During the last 3 months of the pregnancy my belly begins to grow hard. I get some more tickles in my stomach because the skin is becoming tighter and try to smear it in so as to have as little problem as possible. I actually have no problem with the scar, it stretches pretty well. If I feel it with my finger, then it feels taut. The skin near the stoma seems to be a bit thinner because it is stretching outwards. I monitor it and lubricate the skin around the stoma with Dansac skin cream.

 About 7 months pregnant

 

During the last few weeks of pregnancy the baby begins to fall, its head slowly sinking towards the exit in the pelvis. Now I began to feel a bit of pressure on my belly and also on the scar between my buttocks. I was pleased that I stopped working 6 weeks before. Now I could quietly do things. It is a busy baby that sits in my abdomen, I regularly have feet against my ribs or a foot pushes out my side. Fortunately this is always on the left hand side of my body and the baby spares me from going under my stoma and pushing it. Sometimes it seems as if the baby knows it shouldn’t do that.

About 8 months pregnant

 

The birth

Two weeks before the expected date (23-02-2006), I often had a hard stomach. Your uterus already starts to do exercise and then pulls itself together; your stomach is rock hard. So it won’t be long now, as I am glad about that. I sleep badly at night, as I lie on my back it feels as if everything is being squeezed and it’s as if I cannot breathe any more. If I lie on my left hand side, I get a kick in my side and on my right I put all my weight on the stoma, which also feels uncomfortable. In addition, I have had a cold for a couple of weeks, and I cannot shift it. So let the baby come.

Two days before the birth

 

On Friday 17th February, I suddenly got a boring into the abdomen. It went away and then returned in the evening, it went away again and then came back 10 minutes later. Oh dear, has it started? Every 10 – 15 minutes all night it comes and goes. The next morning we called the hospital, which is ¾ of an hour’s drive away and as I would like to give birth there, we will be driving for a while. The hospital did not consider it necessary that we went yet, as long as the labour pains were not 5 minutes apart. So we though, it’s today. At the end of the afternoon the labour pains seemed to weaken. Around 19.00 I was on the couch watching a little bit of television. I told my husband: “well it’s not going to be today”. I got up and my waters suddenly broke, and after that things happened very quickly. The pains started again and were now in quick succession. We phoned the hospital, got in the car and drove there. I noticed very little of the journey, I was totally focused on myself and thought:” I hope the baby is not born in the car”.

Arriving at the hospital, we were allocated a delivery room and there I lay on the bed. Between the labour pains my husband and I changed my stoma bag because it was very full, so that we didn’t have to worry about that any further. The birth went well. We got to the hospital around 21.00 and at 2.11 our daughter Nadine was born, completely healthy. During the delivery they cut me a little bit (with anaesthesia) so that there was not too much pressure on the scar and tearing of course. During the birth I had no problems with the stoma. My scar did sink inwards though. At the place where the anus was, was under a lot of pressure during the birth, and because of this the skin sagged outwards and it felt as if I had a bag hanging between my buttocks. At first I was shocked with this but after a few days it had gone again.

After giving birth my stomach was very loose, and it was difficult to attach the stoma materials to my abdomen. Slowly the belly and skin returned, creating a ripple formation of the skin under the base plate. I had two leaks from this. That I did find annoying. But soon it was all taut again and the materials sat better again. I have had no further leaks or other inconveniences since then.

Meanwhile we have a beautiful 8 month old daughter. My stoma works well. My stomach is pretty flat again and everything is back in place.

Carolien & Nadine

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Elsa’s story:

"I am Elsa, 42 years old, married with 3 children. The first 2 children were born in 1992 and 1994. Six years later (in 2000) I got an ileostomy and one year after the operation (2002) I became pregnant with my 3rd child.

After the birth of my oldest daughter I had vague intestinal complaints, in the eighth month of my 2nd pregnancy everything went totally wrong, 30 times a day diarrhoea, there seemed to be nothing of me left. Admission to hospital, diagnosed ulcerative colitis. About a half year later the gastro-enterologist began to talk about a stoma because It was clear that I had a serious form of UC. I absolutely did not want a stoma, was convinced that everything would go back to normal. And I was terribly afraid that an operation would make me infertile, we very much wanted more children. For the 5 years after that I was heavily medicated, every day high doses of prednisone, imuran and mesalazine. I would function reasonably well with these, but if I took anything less I had a severe regression. The combination that the regressions became worse and worse and the fact that I could not become pregnant with this medication, I finally gave permission. I was operated on in the AMC in 2000. They left the rectum to reduce the risk of infertility as much as possible. Exactly one year later I was pregnant (it took longer to get pregnant that with the oldest 2, but I was also 37 by then).

I was so happy that finally something “normal” happened in my life. The years before had turned on being sick, surgery and the stoma. People always talk to you about it (well intentioned of course), but it’s nicer to walk around like a “normal” pregnant woman.

The pregnancy was rather difficult. One big problem was that food was no longer properly absorbed, everything shot through my body. I therefore hardly gained any weight and that is a bit strange if you are pregnant…. Also no one had an explanation for this, there was then (and still is, I believe) very little known about the combination of stoma and pregnancy. I ate a large amount, had from the dietician all sorts of calorific drinks and comforted myself with the knowledge that the child was growing well. When I was in early pregnancy I had spoken with the surgeon, the gastro-enterologist and the stoma nurse, but actually didn’t feel any the wise. I just had to go to the midwife for checks and according to them a home birth was also not a problem. (I must say here that I had already had two very easy births behind me).

Because I only gained a very small amount, I also had a relatively small belly. I never had a leakage problem, I didn’t have to change my supplies, and used no hernia belt etc and the stoma did not change shape. The biggest problem during this pregnancy had nothing to do with the stoma; I got a thrombosis during the 7th month and then automatically came under the care of the gynaecologist, you have to have a hospital birth and the birth should be induced (due to the use of anti-coagulants). When I had a small stomach I no longer found it annoying to go to the swimming pool. Normally you se the stoma and the bag pretty well in a swimsuit (well, I think so anyway…), but now it vanished under my belly and you saw almost nothing! Because of the belly it was harder to see is the base plate needed changing, but my belly was never so big that I had real problems with it.

The birth itself went without any problems and extra fast, when the labour pains started I quickly put a new bag on and the rest of the birth went the same as the previous two. I breast fed for a year (taking care that the baby did not lay on the stoma…) and also during this period I had no problems with my stoma.”"