You’ve got what seems like Irritable Bowel Syndrome (IBS) and cycle between constipation and diarrhea. Your favorite foods suddenly give you issues. You’ve already been diagnosed with endometriosis (or have you?) and you think “Great, something else wrong with me; like I already don’t have enough to deal with.” Those cramping pains are back so you make that dreaded appointment with the gynecologist who says you need to go back and see the excision specialist to get this Endo removed. “It may have something to do with intestinal issues you are having.” Most women think these are separate issues, but they may be the same issue presenting itself in multiple ways. The Endo excision specialist orders some tests and then says based on everything she has seen, she thinks it is definitely Endo related and needs to be removed ASAP. Surgery is scheduled and not only was she right, it’s worse than previously thought.
YAY for Having Options?
You not only have regular Endo, you have now developed bowel Endo and it’s apparently the cause for the IBS symptoms. So not only do you have an Endo excision specialist, you have a colorectal Endo surgeon as well who is specially trained in bowel and intestinal Endometriosis. This surgical team determines how to remove the bowel Endo your body has so generously grown for you. Based on the severity and location, there are a couple options: if you have a smaller area of bowel Endo, you will have disc resection which is similar to excision where the affected area is cut out and the hole closed. Rectal shaving (which sounds awful) can also be performed for small areas of bowel Endo where they basically scrape the impacted area. With this removal procedure, Endo is likely to regrow since the roots of the disease are not surgically cut out like in disc resection or excision. If you are like me and have severe (stage 4) Endo, you have the last (and in my opinion) the worst option, segmented bowel resection. This is done for larger areas of bowel Endo where the surgeon will remove a section of bowel diseased with Endo and then sew the 2 good remaining ends back together to complete the loop. Doesn’t sound too bad, right? Well that part isn’t horrible because now the Endo diseased section of bowel has been removed and won’t be able to grow back in that same location. The upside was that there was finally a solution for getting rid of this horrible disease that is plaguing my life. The downside – I had to let those reconnected ends of my large intestine heal. In order for this to happen, nothing could flow through there and had to be diverted elsewhere. This meant that when I woke up from surgery I would have part of my small intestine poking out of my belly and diverting into a bag to allow the large intestine to heal. This completely freaked me out.
Lifestyle Changes Suck
Upon waking up from surgery I immediately felt for where they told me my intestine would be outside my body. I could feel something…bandages maybe? I wanted to look, but was scared. I had read a little about this type of surgery, but nothing could prepare me for what I would be dealing with for the next proposed 3 months of healing. Over the next couple days after surgery I learned quick – liquid poop in a bag hanging from my body. I met with a nutritionist, a dietician, and a stoma nurse and they kindly let me know what I was allowed to eat and do while caring for the red blob in a bag. I was no longer allowed raw fruits or vegetables, nuts, seeds, anything with skins, or anything challenging to chew like steak. I could eat ground meats, cooked vegetables and fruits (still without skins), and soft foods – nothing hard or crunchy. Apparently the large intestine is what digests all those hard to digest foods and currently that was on vacation for me. I was also told that I would need to add more salt to foods since that is absorbed through the large intestine for the body. They explained that due to this procedure I would dehydrate very quickly with what they called a loop ileostomy (the technical name for my intestine hanging outside my body). I got used to calling the nurse to help empty my bag (of poop) every couple hours. But then I was told we needed to “change” the bag. I would be trained on how to do this and then be expected to do this myself. This shit scared me. What if I hurt this alien poking out of my belly? Could I break it? The stoma nurses I met with were very patient with me as it took me nearly an hour the first time I tried to change the bag. It was such a process and I was definitely unprepared for the clean-up procedure. The smell nearly overtook me and I thought, “No way can I do this on my own.”
My immediate lifestyle change of foods, activities and now carrying an emergency bag change kit on me at all times was a little too much for me to handle. I got depressed. Very depressed. I couldn’t eat just anything anymore without fearing that it could cause issues with my stoma. I couldn’t do what I wanted anymore as I had to figure out how to dress and do things with a bag full of liquid hanging from me that would need emptying in a very strategic manner. I got tired of eating soft foods like scrambled eggs and mashed potatoes very quickly and I longed for a Caesar salad (which is completely off limits for me). Every day is a struggle finding clothes that fit over my bag without squishing my stoma when sitting. This made pants challenging as the waist band sits right over my stoma site. Eating the wrong thing could cause a life threatening blockage. So there’s always the chance that some food I eat will not agree with me and cause an issue, but if it means not having bowel Endo anymore, I guess this is better. I still can’t believe how much Endo has broken me and ruined my life. I’m told that living with this bag temporarily is better than being dead in a box. But I’m not totally sold yet.
This post was originally published on October 29, 2018 on Endo.net at
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