Sick and Scared

Friday, August 31, 2012

Question

I am a single woman in my mid-thirties. My doctor had to refer me to a specialist because of repeated, uncontrollable bouts of vomiting and diarrhea. The specialist found inflammation and infections in my gastrointestinal (GI) tract. Their cause is mysterious. I might have cancer or really bad food allergies or a rare genetic condition or something else. I need exploratory surgery, but I have been told that I will need to wear a colostomy bag after surgery. This “may not” be permanent!! We just won't know until I get a better diagnosis. They may have to remove a lot or most of my colon, and then the colostomy would be permanent.

I have enjoyed a pretty active sex life, or at least I did until I started to feel so ill. Now I can't imagine anybody finding me sexually attractive. If a guy does want to ask me out, how on earth do I tell him about the colostomy bag? Do I tell him before we go out? Do I mention it if I think he is going to kiss me or caress my body? Or do I wait until we get to my place and it seems like he wants to move into the bedroom? Won't he run screaming for the door? How am I going to hold down a job? Will other people find my presence offensive if I am at a restaurant or a movie?

I have honestly considered refusing treatment because this is freaking me out so much. My doctor is not a very warm person, and I do not want to discuss any of this with him or with the surgeon. Am I crazy to think I would rather die than go through life with this awful device permanently attached to my stomach?

 

Answer

You are faced with radical medical treatment and an unknown diagnosis. This is enough to make anybody's stress go through the roof. I'm not surprised that you say you are considering not going through with it. But I think that a lot of your issues could be eased with the right education. I blame your doctor for being cold and withdrawn. All of us need to feel that we are receiving good medical care from someone who wants us to be happy and well. If you feel that you can't ask questions—even very personal ones—of your doctor, of course you will be terrified of the treatment!

I strongly encourage you to get a new doctor. If you cannot locate a specialist, find a support group or a nurse who gives care to people with stomas (the hole in the stomach) and colostomies (the bag that collects feces, mucus, and gas). You will discover that many, many more people have this surgery than you could imagine, and normal life after the surgery is definitely possible. Most colostomy patients find that they are able to have the colon put back in a normal position so that elimination via the anus is possible once again. Your colostomy bag may be a temporary inconvenience. There is no need to consider death as an option that's better than having a colostomy!

For now, concentrate on getting ready for surgery. Find out what you can and cannot eat to receive good nutrition. See if you can bring your weight down, if need be. (A lucky few of us might need to gain weight to be at the optimum healthy size to promote good recovery.) Exercise is important, not only for your physical health, but to reduce stress and anxiety. Most of us can walk. Swimming is often another good choice. These are things you ought to be able to discuss with your doctor or a member of his or her staff.

Be aware that recovery from surgery is a process. You are going to feel better. Being determined to follow instructions, get up as soon as possible, and walk and cough, are all steps you need to take to heal. You will feel better once you know exactly what is wrong, even if the news is not great. It is surprising how tough you can be when you have to find your courage. It is also amazing how a life-threatening health problem can lead you to focus on what is good about life, so that you can continue to take joy in living and breathing.

There are several different types of surgery that lead to the intestine being connected to a hole in your lower belly (stoma). There are also several types of appliances that are attached to the stoma. You may need to experiment to find the best devices for your body. Your colon will go a little crazy after the operation. Be patient, it will probably settle down, and things will improve, so that your body is producing less and more solid waste, less gas, and fewer unpredictable episodes. In the meantime, practice saying, “Sorry, I recently had surgery, and I don't have very good control over that yet.”

All of us are on some sort of bathroom schedule to handle our bodies' needs to eliminate waste. Having a colostomy just changes that schedule and the methodology. I know that people in the West are deathly afraid of poop and don't want to see it, handle it, smell it, think about it, or admit that it exists. But poop is just part of being a mammal, it's like blood and spit, sweat and tears. We need it to survive. For most of human history, there were no flush toilets, so we had to be more aware of the end results of our meals. There are techniques for coping with cleaning or changing the bag. You may be able to simply change and dispose of it with minimal sensory impact. Wait to find out exactly what you are dealing with, then freak out. All freak outs should be based in reality, even though that does reduce their beauty and grandeur.

Many people are afraid that others will be aware of the colostomy bag. None of us want to be a stinky mess. But this is rarely true. The bag is usually invisible under clothing—even a swimming suit. It's possible to shower or swim. Modern colostomy bags control odor very well. You may be aware that your body has changed because you are used to the way your body worked before the surgery. But a stranger standing next to you is unlikely to detect a change in your silhouette or any offensive odor.

I won't lie to you—sex after this surgery will not be the same. You will need more communication and trust with your partner. One-night stands might not be practical or enjoyable. It all depends on how well you adapt and how comfortable you are with yourself. It is hard for me to predict how the surgery will affect your ability to perform sexually since we don't yet know exactly what the surgeon will need to do to save your life. But there are support groups and medical people available to help you cope.

A few things can probably be predicted. One is that you won't enjoy intercourse while laying on your back with your partner on top of you. If your rectum is removed, you may find vaginal intercourse painful in that position because the vagina no longer has supportive structures underneath it. The colon manages our body's hydration, so some women experience vaginal dryness and need to use additional lubrication. During surgery, the blood supply or nerve endings to the genitals may be affected. You will need to be patient with yourself and allow new patterns of sexual response to emerge. Masturbation is the perfect place to start. It is a good way to self-soothe, to help yourself to sleep or just relax. And it is also a good way to retrain nerve endings and find out how you might like a partner to touch you. One you are able to masturbate to orgasm, you have the skills and information you need to pass on to a lover.

The stoma itself is not sensitive to pain, but you will need to monitor it to make sure you are not in a position where it could be harmed. The colostomy bag can be concealed with lingerie or covered much like a heating pad. Some people are able to wear a small cap over the stoma instead of the bag for the duration of sexual intercourse.

I personally would feel more comfortable with a partner who wanted to look at the stoma and understand how it worked. But some people are frightened of medical problems and want to keep them compartmentalized far away from romantic situations. I can understand that. You also may not be comfortable explaining your medical needs to a potential sex partner. For example, you may only want to say, “I recently had surgery, but as long as we don't put pressure on the area, I should be fine. I'll let you know what I need. Now kiss me, you fool.” These are things that can be negotiated on a case-by-case basis. If a relationship goes beyond a few dates and becomes serious, then it may be time for more medical knowledge. Check out your own responses and needs. Sex can be a vacation from the less pleasant parts of our lives, so if you'd like a bit of escapism, that is your prerogative. If you feel that you need somebody to be able to deal with every part of your life before you can trust him or her, take that seriously and seek out such a person.

A close brush with death can change us deeply. You may find that the role of sex in your life changes as well. It would not be surprising if you found that you wanted something different out of sex than you did before you became ill. You may be attracted to a different sort of person. You may want more or less intimacy. This is to be expected, so be prepared to get acquainted with a new you. It is indeed miraculous that we can adapt to huge changes in our lives, and become whoever we need to be in order to cope. This can be unwelcome, and we can get detoured into self-pity, or we can find new sources of determination and meaning. I am not saying this is easy, mind you. Life with a serious medical challenge is no joke. But, strangely enough, having a sense of humor will get you through it more easily than a long face. Be gentle with yourself because you are in genuine pain, but don't let yourself embroider on the pain and become a whiner.

Most large cities have patient advocacy groups and support groups for colostomy patients. There are even more resources on-line. Below are some of the things I was able to discover in just a few hours of poking a sharp stick at the Internet. (Okay, I was typing on a keyboard, but I would rather imagine a more primitive form of interrogation.)

There's a long and quite helpful article by Craig J. M., “Colostomy: A Patient's Perspective.” I found it at medicinenet.com/colostomy_a_patients_perspective/article.htm. There are many moving blogs about this surgery. An exceptional one is my pink button at blogspot.com. I found some good, general medical info at healingwell.com, while coloplast.com had detailed information on specific appliances including patient education videos. There were a couple of social organizations for ostomates including meetanostomate.org and ostodate.com. I also found ads on all major dating sites placed by people who had colostomies, so you don't have to relegate your social efforts to a community of people who were similarly affected by illness or medical treatment.

I am sincerely hoping that your diagnosis will be as minor as possible, and that you will not need any permanent rearrangement of your GI tract. Please feel free to keep in touch if you have an update on your condition or additional questions as you find out more about what challenges you'll face. 

 

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