Son needs ostomy due to perianal fistulae

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/22/2017 6:47 PM (GMT -7)   
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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 10/22/2017 8:56 PM (GMT -7)   
I am really sorry. I wish this stuff would never happen to anyone. I had the same as your daughter, temp. I had 3 steps so I had a loop and an end, and the end was far superior. I don't know anyone with a colostomy, well one person here, but that's all. Most of the people have or had ileostomies. My nurse told me that the colostomy is more formed and less frequent, which is good and bad. When you imagine the bag under your clothes, you imagine it flat, but with colostomy, if it's firmer, it seems like it would be harder to hide. I don't know though, as I said, I haven't experienced both. I think a lot of it depends on your perspective. Some people get an ostomy and they instantly feel better and live like to the fullest, and others will not feel as comfortable. As for biologics, I'd probably want to try them before surgery personally, but it sounds like he's been unwell for a long time and may need relief quickly and some of these meds take a while to work.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 692
   Posted 10/22/2017 9:14 PM (GMT -7)   
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
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 10/23/2017 2:25 PM (GMT -7)   
HAS your son so Crohns ever been in his small intestines? Is the crohns disease ever in his colon in other places besides the rectum?

Did his doctor recommend one over the other?
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 261
   Posted 10/24/2017 6:51 AM (GMT -7)   
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.

blksteeda
Veteran Member


Date Joined Dec 2009
Total Posts : 1623
   Posted 10/24/2017 6:54 AM (GMT -7)   
I had both a colostomy as well as an illeostomy. My colostomy was due to an infection after a large bowel resection in 2013, it was an emergency surgery situation. My colostomy was a transverse, it was located in the same place I had my ileostomy in 2015. Out of the two I have had, the colostomy was far easier for me to deal with. It was much more well behaved. I had slower output and thicker with my colostomy. My loop ileostomy was a royal pain in the ass honestly. My colostomy stoma stuck out nicely, my ileostomy was almost flush with my skin and caused so many skin issues for me.
43 Male, South Florida

10/14/15 - J Pouch step one complete

2/10/16 - Takedown and very happy with my J Pouch

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/28/2017 10:39 PM (GMT -7)   
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.
Mom to bratcat (21 years old) and nonamejames (24 years old)bratcat diagnosed with pancolitis 10/06. Flared Fall 2006, Fall 2007, Spring 2008. Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade. 7/3/08-Step 1 j-pouch surgery, 11/08-Step 2 reconnection, no meds
nonamejames diagnosed with Crohn's in 2007. Pentasa, 6mp.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 10/29/2017 7:49 AM (GMT -7)   
Wow that is a lot to handle. But it sounds like this surgeon has a good plan. My crohns was always sigmoid colon and rectum. I think an ileostomy is the way to go. The surgeon is right, why risk leaving any colon later for the disease to attack.

I had a loop first and I think loops for Jpouchers and temp loops made when all of the small intestine exists are different animals. I didn't mind my temporary loop at all. For me it behaved very similarly to my end. I know a fellow Crohnie that kept her loop for a year with no problems. I think the loop is harder for jpouchers because it is higher up and there is less intestine to work with because of the jpouch creation.

I hope your son gets the relief he needs and it makes the ostomy easier for him to handle. I felt so much better with my loop it made my decision to go permanent easier.

Best wishes for a smooth surgery Tuesday!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 10/29/2017 9:23 AM (GMT -7)   
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.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 347
   Posted 11/1/2017 7:13 AM (GMT -7)   
Hope surgery went well for your son! I had my total colectomy with end ileostomy two weeks prior on Tues. Oct. 17th and I feel MUCH better! I was incredibly sick, steroid refractory and failed 3 biologics. I also have a peri-anal fistula/thrombosed hemorrhoids/and fissures, all of which are non-issues since the surgery. Best wishes to your son!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Total Colectomy Oct. 2017!
Previously used: Remicade, Humira, Stelara, Imuran, 6MP, Apriso, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam, Prednisone
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Nonamejames
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/4/2017 10:56 PM (GMT -7)   
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.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15256
   Posted 11/5/2017 10:09 AM (GMT -7)   
Hey James, thanks for checking in. I am happy you're home and healing. I can totally relate to how wonderful it is to be able to eat, and have an appetite, and not deal with the repercussions of eating for the first time in so long. I think it's worth it to get the supplies you want. Sometimes insurance covers them too. You should reach out to the different manufacturers and have them send you samples. I was kind of having fun with that, maybe a little too much. I always wanted to try every brand and product, but ultimately you will find something that works for you and not want to be bothered. Everyone seems to love the coloplast mio lately... Having the pouch definitely becomes secondary once you figure out what works for you. I am happy you're feeling better. Keep us updated. Congrats on starting a healthy life.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
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