Burning diarrhea after illeostomy takedown

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Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 6
   Posted 10/27/2017 12:09 AM (GMT -6)   
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 : 10327
   Posted 10/27/2017 4:42 AM (GMT -6)   
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 : 6
   Posted 10/27/2017 11:40 PM (GMT -6)   
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 : 10327
   Posted 10/28/2017 6:18 AM (GMT -6)   
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 : 1979
   Posted 10/28/2017 11:52 PM (GMT -6)   
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 6:19 PM (GMT -6)   
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

Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 6
   Posted 12/20/2017 9:40 PM (GMT -6)   
Yes that's a major problem in the US. Doctors scared to prescribe pain meds. Unfortunately I have been labled as a pain seeker on my medical charts by a horrible doctor I had. At the age of 14. She didn't think I was having lain and refused to give me anything. Went to the ER with extreme pain and they did an X-ray and said nothing was wrong. Next day I was back and at this point my parents started to believe I was seeking. They did a CT scan and saw I had a full bowel obstruction with necrotic tissue. Even after the emergency surgery she didn't want to give me anything because she had already labled me and didn't want to go back on it because it would make her look bad. I'm from Vegas and we don't have many GI doctors. When I was younger I had a male doctor that now refuses to see me because when I was 10 I had to go to the er and went to one that was close to our house that was not a hospital he sees patients at so therefor he dropped me as a patient just because I went to a hospital that was closer because I needed treatment right away. We are looking into it to see if that's even legal. And the k my other doctor I can see arnt very good from what I have been told my by Infusion doctor. The female doctor who won't prescribe pain meds agreed to be my doctor here in Vegas but my Offical doctor is in San Diego but I needed a local doctor.

- Pain clinics here a lot of the time don't give out pain medications or medication that can make you "High" they most of the time want to try meditation or physical therapy which in my case literally would be impossible to work because it's rectal pain. Now if it was muscle pain or a back in surgery sure but this is inflamed bowel.

- The burning is just the worst part. I eat and it burns. I don't eat and it burns. No matter what I eat. It's now been two months. No medication has helped the burning. Also I'm constantly using Desatin cream with zinc because bottom gets raw from the bile. I feel the pain in my lower back and lower stomach and rectum and have to go to the bathroom right away and can't hold it for very long eigojt massive pain. And when I go to the bathroom it hurts especially when I eat thicker food. Basically how I swallow it it how it comes out.

- I still had pain when I had a iliostomy because I had a stricture. And like I said above how I ate food is hoe it came out and it's awful having stuff come out your stomach. And also I had a lot of problems with it leaking because I have eczema. I always wore sweatshirts to cover the bag because I didn't want anyone to know I had it. I couldn't go swimming because the swimming bags don't do anything. And I just didn't have a social life. It was also starting to protrude and would have needed surgery soon to fix it anyway before it came all the way out. I couldn't do any hard activities because the fear of the bag opening or leaking in public was just awful. So I had extreme anxiety. So I wanted it gone so I could live a normal life. You know swimming. Riding a bike with friends. Even just a simple thing like sleeping on my stomach.

- I am now on the following medication
Oxycodone 5 MG
Prednisone 30 MG tapering down -5 every week
Celexa 20 MG
Folic Acid 1 MG
Methotrexate Injection 0.6 Once a week
entyvio Infustion

- I'm almost out of pain medications and I'm terrified because I'm still in a lot of pain and the only doctor that will see me labled me as a pain seeker so I won't be getting anything from her. I can only go to one hospital in the entire city because one has me labeled in their system as pain seeker and the others are just bad and my doctors don't trust them. And I don't want to go to this er for basically a refill on pain meds. I'm just stuck and have no idea what to do

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16067
   Posted 12/20/2017 10:43 PM (GMT -6)   
I am sorry, that is awful. I really think you should see about going to see a surgeon who is the BEST possible and at least getting the records reviewed. It would be good to find out what is actually going on inside your body, and why things are so difficult. I have lived with the ostomy bag, and I was also a little bit self-conscious, but you learn what works and what doesn't so far as clothing. You find something to wear to swim, and ride bicycles. Was the ostomy any easier for you, aside from the "hiding" the bag? Have you tried calmoseptine for a protectant? Is the burning something fungal? have you had it looked at? I've had a fungal infection on my butt and I had to get prescription cream. You really need a good team, that will work with you, and be compassionate of your needs, to get things headed in a positive direction for you. You're so young, you have your whole life ahead of you. I hope you have a good support system at home. Unfortunately, you have to fight to get what you need. In the end, we all have to advocate for yourselves. Let me know if I can help.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
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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

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6167
   Posted 12/21/2017 5:36 AM (GMT -6)   
it most likely is too much bile. your guts have not gotten used to getting bile down that far, it was going right out the ostomy for along time. it does take some time for your body to relearn what it is supposed to do with it. when you eat, your gallbladder if ya still have one secretes bile salts. it helps digest food. depending on what sections of gut your mising , that may be the place where bile salts are reabsorbed. if so another section will most likely take over this function with time. and the burning will lessen. its basically trying to digest your butt hole . may even feel like pooping broken glass and it still burns after right? you may benifit from a bile salt absorber such as cholestid ?i-something. cant remember off the top of my head soaks up the bile into a solid to lessen the burn till your guts adapt. so no pain meds needed. hope it helps.

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6167
   Posted 12/21/2017 5:48 AM (GMT -6)   
oh and have your parents talk to a lawyer about getting your medical records amended to remove any mention or codes that this dr said you were seeking drugs. the lawyer should be able to do that simply by asking what expert qualifications that dr had to label you as such. also have your parents get complete copies of all you records and inspect each page for any codes or doodle in the margins that do not belong or look non medical in nature. such as a group of letters or numbers. certain drs and health plans put codes in the margins of records or at the top or bottom of the page to warn other drs that the patient is a seeker . it may be as simple as 'pc' or '2mene' 't3s' etc... which would stand for pill chaser, too many pain meds , tylenol 3 seeker. etc.. some may be sideways backwards, a word in a foreign language even that means pill,pain meds, addict or whatever. actually this is a good FYI for ALL patients.

Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 6
   Posted 12/21/2017 2:58 PM (GMT -6)   
Randy that makes so much sense about the pooping glass. I will look into other medications. Thank you
. I have no large intestine except about two inches to re connect me. I was still having pain with the bag and it wasn't working for me

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10327
   Posted 12/21/2017 3:30 PM (GMT -6)   
I hope you have a rectum at least! Cos 2 inches is crazy otherwise. But in my experience the frequency and bile acid does get much better. I only really get bile if I eat too much fatty food now. Also, Randy is right - pain meds won't help with bile acid but cholestyramine could do. I found calmoseptine couldn't prevent the burning but it was very soothing afterwards.
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 : 6
   Posted 12/21/2017 6:40 PM (GMT -6)   
I'm also having rectal pain and stomach pain and my mom doesn't want to take me to the er. I just don't know what to do anymore. I need pain meds for u til this all heals

Giftedarmadillo
New Member


Date Joined Oct 2017
Total Posts : 6
   Posted 3/22/2018 5:49 PM (GMT -6)   
I thought I would update you all since I’ve been gone for a bit. I ended up gettin an iliostomy again because the pain was to severe. The surgeon was surprised I was even living like that for so long. As for now this is permanent until further research finds another way. They took out all of my colon I have left and I’m doing s lot better now

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10327
   Posted 3/23/2018 8:56 AM (GMT -6)   
That's good to hear. As you're so young hopefully there will be some kind of breakthrough in your lifetime, but if not I do know folks who have spent several decades living with an ileostomy quite happily.
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)

lazyminimoo
Regular Member


Date Joined Feb 2018
Total Posts : 51
   Posted 3/23/2018 4:40 PM (GMT -6)   
Maybe one day there will be something new to make life even better for people with ileostomy although i cant think of what it would be an having stoma isnt too much of an inconvenience from my point of view but your so young so have more hope of seeing new things brought in then some of us haha but by then you may not even care to change it
Had my colon removed sept 2017 in emergency surgery because it perforated because of toxic mega colon, was told i had uc originally but that changed to crohns when the pathology came back after
have ileostomy probably permanent
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