Son needs ostomy due to perianal fistulae

Hi. My son (29 years old) has had Crohn's for 10 years. Most of the time, it was held in check with meds. It has always concentrated by his rectum/anus and he has had some abscesses over the years that have always settled with meds. Unfortunately this time it got worse. He's been in the hospital for 10 days, antibiotics are not helping, and they can't think about adding a biologic (pros and cons to that too) until the fistulae are under control.
The GI and surgeon all agree that an ostomy to allow the rectum/anus to hopefully heal would be best. The surgeon suggested 3 types (ileostomy, transverse colostomy, sigmoid colostomy). He explained the pros and cons of each. The surgeon feels that although this will start temporary, he honestly believes that it will be permanent in the future.

I know quite a bit about ileostomies because my daughter had one in 2008 as part of her jpouch surgery (we were here and on the UC and Crohn's pages back then). Colostomies are new to us. I'm here trying to find information so my son can make an informed decision.

Does anyone have any input/suggestions? Once he is cleared from surgery to be released from the hospital, he will still have to get the fistulae under control. As long as the surgery goes well, the surgeon isn't concerned that the reason he came into the hospital is because he can't sit, has trouble walking, and he would be going home with these same issues (as well as having to heal from the ostomy and get used to it). I doubt it makes a difference but he has always been a tall, thin kid and now man. I'm talking 6 foot, 120-125 lbs with his clothes on. At the hospital, in pjs, he weighs about 110 lbs.

Do any of you have anything positive or negative toward any of the 3 ostomy choices? I'd love input. I'm hoping he will join here when he is ready.

I am sorry your son and your family are going thru this.

I am a 57 year old female. I have been healthy all my life until I caught food poisoning. Diagnosis took a little while...and finally when the fistula started opening up they diagnosed me with Crohns. (December 2014) I was in the hospital several times for sepsis. I was transferred to Baylor Dallas for care. They developed a team of doctors that stated my colon looked like a sieve but they hoped they could save me and maybe my colon... I was diagnosed with aggressive severe fistulizing Crohns and I started Remicade June 2015, most of my fistula closed,(but the ones left that I had were large and extremely active), most of my colon healed, but I still had all of the symptoms of Crohns and the pain, I developed a soft tissue structure in my sigmoid and in Septmber 2016 I had a sigmoid end colostomy. They stated it was the easiest to care for, it did not have as much acid in the output, it could be temporary or permanent, some people may develop some control by using irrigation, my fistula might heal with the devirsion, and it saved more of my colon for down the road.

My surgery lasted over 10 hours and it was open. When I woke up I was in pain from surgery BUT I felt so different. I can not explain it...only that it amazed me and gave me hope. I did have some complications-but am doing better.

Some of my fistula closed. I still have a couple/few that still give me some issues. They stem from the inactive portion of my colon--but they are not inactive. That remaining piece of sigmoid colon still makes mucus, my fistula still are active and must be cleaned several times daily. I have not developed any new fistulaes. The colostomy has given me some control over the accidents. I can eat food again. Low residue. I had lost 60-80 pounds. Now....The Remicade, methotrexate and prednison have made me a very chunky monkey..... I still have the other Crohns symptoms. The extreme fatigue, arthritis, uveitis, heat intolerance and nausea are still there.... Before I slept sitting up on the toilet with a bucket while taking Zophran constantly hoping it would take the edge off..screaming or crying from the pain.. Now I don't sleep with a bucket and the Zophran helps more and I can actually lay down. I still have pain.

I don't want to discourage you and yet I don't want to paint a picture of 100% remission. I have heard that happens for some. It just didn't for me.

I wish your son and your family all the good health available.


Clo

I don't know how to help. It's obvious that you have a lot of knowledge about Crohns and ostomies.

I had one foot in the grave around 11 years ago. I had severe ulcers from my throat all the way down to my sigmoid. They operated and I ended up with an ileostomy. Best thing I ever had done.

But, the real reason for this response, is to recognize your commitment and love for your children. Your post brought tears to my eyes. God bless.

Thank you all for your responses. We had my son transferred to another hospital where my daughter's surgeon in (he is head of colorectal surgery there). He scoped my son to see if there was anything less drastic that could be done (setons to allow the fistula to drain, etc.). Unfortunately, he also feels that the rectum and anus, even if they can heal from the fistulas, are too compromised from years of Crohn's issues down there. Plus the colon down there is very narrowed. He tried to dilate it but it didn't do much good.

He suggested a temporary loop ileostomy first to allow the rectum/anus to heal. Then after 10-12 weeks (or later), he suggests making that a permanent end ileostomy, and to remove the anus, rectum, and colon. The end of the sigmoid colon is also inflamed from Crohn's. He said if the colon was left (and the anus/rectum removed), the Crohn's would absolutely work its way up farther in the sigmoid colon.

My son is having the temporary loop ileostomy surgery this Tuesday (10/31). Although it's still hard to wrap our heads around how drastic this all is, he is so tired of being sick and wants to start to feel better and get on with life. I figure we can make decisions about the next step in the next few months.

The surgeon did talk more about the differences between a loop and end ileostomy. We know from my daughter's loop ileostomy how much of a pain they are. He (and the ostomy nurses) said the end ostomy will be easier with less chances of skin irritation because it sticks straight out (instead of tilting up or down) so there will be less leaking. We know it won't be perfect. If my son can get through the first ileostomy mentally, physically, and emotionally, I think it's going to be ok.

notsosicklygirl, because the fistulas are still very active, the doctors don't want to start a biologic at this time. Like you said, they also take time to start working and time isn't on his side now.

clo2014, thank you for your openness about your issues. I think my son's surgeon would prefer an ileostomy because of future issues that can come from the sigmoid colon showing Crohn's.

Cupcakespinkgal, my son's Crohn's has always been in the perianal/perirectum area with a small amount in the lower sigmoid colon. No other place in the digestive track.

Tom1, thank you for the kind words. I can only imagine what my kids (and all of you) go through. You are the real heroes. I'm the support system. A mom is only as happy as her unhappiest child.

blksteeda, from what I understand, loop ileostomies are much tougher to deal with. My daughter hated hers before her takedown.

Good luck on Tuesday. It's a lot to take in, but the interesting part is that he will likely feel better shortly after his procedure, and before you know it, he will be able to do all the things he's been missing out on. Having a pouch isn't something that will be on his mind all the time. You adapt and learn to work with it. It can be very liberating. Living with the pain, discomfort, unpredictability of chronically struggling with IBD and related issues is a lot more to handle then the pouch, especially once you learn how to manage it and you gain your confidence back. I was great with my end ileo. I wasn't so lucky with my loop, but as cupcakes said, a loop for people who are getting reconnected to a jpouch may be more difficult to manage. I've seen some people here with loops for long periods of time, and many of them are 100% happy. In fact, some have disappeared and moved on entirely. I hope your son will experience a fantastic result so he can live life to the fullest.

Nonamejames here! Thank you all for the words of confidence and well wishes. Surgery went well, and I’ve been home Since Thursday evening. Definitely something to get use to, but so far I think I’m doing ok. I have an amazing support team that I wouldn’t change for the world. Since the surgery and being home, I have gained back an appetite and am less worried about having to run to the bathroom. After lots of research, I’ve ordered a Stealth Belt Pro, and despite the cost ($99, yikes) I feel as if it will pay off especially since this will be permanent, and give me that extra confidence in owning a bag. I’m already trying to get back into everyday things like nothing happened, but keep reminding myself to take it easy. Eventually I will start my own thread for this journey. Huge huge thank you to my mom and sister (Bennie and bratcat), and my brother.