Burning diarrhea after illeostomy takedown

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Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/26/2017 11:09 PM (GMT -7)   
I recently had a illiostomy takedown on the 13th of October and am having burning diarrhea that starts about noon and goes on all night. I go to the bathroom about once an hour and it's just really painful. I've been using diaper rash cream which helps but doesn't stop it. I've had this surgery before and my recovery wasn't like this. I feel like I live on the toilet. I'm only 16 and just yesterday I wanted to go for a drive with my mom to get in some driving hours for my permit like a normal teen and 5 min in I had to race home to go to the bathroom. All I do is try to sleep so the pain goes away or I'm on the toilet. I want my life back. I've dealt with crohns since I was 9. Had so many surgeries.

2011 colostomy input
2011 colostomy takedown

2014 new iliostomy
2017 takedown

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10016
   Posted 10/27/2017 3:42 AM (GMT -7)   
I'm sorry, you've clearly been dealt a rough hand from a young age with this disease - you deserve a break. Unfortunately, it's likely to be a few more months before things really improve. It does get better - I was getting up 4-5x a night to go to the toilet for the first few months after my takedown and now, two years on, I can sleep through the night.

In the meantime what meds are you taking? Have you tried Imodium to slow things down? Or cholestyramine for the bile diarrhoea? (Bile is what's causing the horrible burning). Certain pain meds can also slow things down. Unfortunately 'cos they also come with a risk of addiction, many doctors won't prescribe codeine, etc. But if you are in that much pain, you should speak to your doctor about it anyway. If nothing else, he/she can definitely prescribe other stuff, such as the first two meds I mentioned.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/27/2017 10:40 PM (GMT -7)   
Imodium makes it worse sadly. I am on oxy for the pain but that prescription is running out. I still have a hole in my stomach healing where the iliostomy was. So I'm in a lot of pain. I go to the bathroom before bed about 10 times. I'll go then lay down and get right back up from the pain in my rectum. I got my surgery takedown in another state that I live in and my doctor here I hate to say it sucks. We don't have many doctors here. I can't get any pain medication because since I've basically been on t3 codine since I was 9 my doctor here labled me as a drug seeker/addict which is awful. Just because I'm a teen doesn't make me a drug addict. I think it's more to save her in the long run. So I'm left with no options. I go to the bathroom at least 20-30 times in 12-24 hours. I just don't know what to do anymore

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10016
   Posted 10/28/2017 5:18 AM (GMT -7)   
I'm not from America, but I know there has been a massive scare about the opioid crisis over there and doctors who are seen to be prescribing too many pain meds are at risk of having their license taken away. There have been a few threads about it recently. You aren't a drug addict/seeker: the doctor is just basically covering her own back, but instead of acknowledging that blames the patient instead. The current recommendation seems to be to get a referral to a pain management clinic if you can. Is that a possibility for you?

I would also change your doctor if you can, or at least go back to the one who did your surgery. Just out of interest, were things any better for you while you had your ileostomy? How much of your colon do you have left? And are you on any Crohn's meds? I hate to say it, but there is a possibility the Crohn's could have returned already. On the other hand, you are only 2 weeks out from major surgery and there will still be a lot of pain from that - I do hope that is the main cause of your pain, because that will at least get better.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1944
   Posted 10/28/2017 10:52 PM (GMT -7)   
I have the same concern about ileostomy reversal, (worsening diarrhea) especially since it would be my 4th surgery. 2 resections, one repair and the reversal? I've had bile acid diarrhea for years, and yes, it can cause ulcers in the intestine. so I understand how much that hurts you. Ask your doctor if cholestramine (bile acid blockers) would help you? However since your ileostomy reversal is fairly recent, they may make you wait a bit until every heals up more, because it may constipate you? I'm not entirely sure, maybe someone else here knows. Best of luck.

Noni wendi
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/7/2017 5:19 PM (GMT -7)   
Hi I just joined Iam glad to see I am not the only one that is going through this,I had my reversal October 16,2017 and since I have been home I have had diarrhea. I don't want to leave my house. I started taking fiber pills seems to help just started taking them.any ideas would help a lot thank you
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