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Posted 7/4/2016 3:14 PM (GMT 0)
Hi. I have come to this site frequently over the past 2 years as my son was diagnosed with ulcerative colitis. 2 weeks ago, he had the total proctocolectomy and an end ileostomy created. He decided to skip the option of a jpouch. While the surgery went well, he's healing from the surgery, no infections..... His stoma is just erratic. He had ileus which began on the 4th day post op. It lasted for 4 days. The NG tube is removed, the PICC line is removed, but here we are, the stoma stopped working again. They took him off of solid food after one day of solids because he started cramping and vomited. The stoma worked during most of that time. The food he ate made it through the stoma. But the Drs Suggested he wasn't ready for solids and moved him back to full clear liquids. Things like blended soups and yogurts.

This morning, his surgeon suggested they give him Ensure nutrition shakes to keep up with nutrition since the PICC line has been removed, and even mentioned that though they prefer to send people home with ostomies that are fully working with solid food, they might send him home if he's ok on full Liquids.

So, I'm just not familiar with this scenario where a person has an ileostomy that won't work when solid foods are eaten. Is this just normal but I haven't come across many stories like this? What is going on? He doesn't still have ileus. (Which, for the uninitiated, was horrible)

For background information: Then 19 year old son dxed with UC, now 21. Last flare in March 2016 lead to medical leave of absence from college and put on steroids along with Lialda. Told to take 6MP or humera. Opted for total proctocolectomy during the summer break in order to return to school this fall. Currently 2 weeks post op unable to eat solid foods. Don't really understand why this hasn't resolved.

Thanks for any assurances, guidance, etc. in advance.

Post Edited (JayBee1) : 7/4/2016 9:17:06 AM (GMT-6)

Posted 7/4/2016 4:06 PM (GMT 0)
I'm sorry your son is having such a hard time. I think it is very brave he opted to take more control of his health and have surgery.

The intestines are finicky and don't like to be messed with. I had a mild ileus and was in the hospital 11 days before they would finally let me go home. At one point even the contrast liquid for a CT wouldn't move through me.

Hopefully if the doctors don't see any complications it is just his intestines taking their time to adjust. It took about a month before everything calmed down for me and I felt like my intestines were moving as they should.

One sugeastion I was given that helped was to chew gum for 10-15 minutes. It stimulates digestion and gets things moving without putting any more in. I would usually chew gum for a little bit after I ate.
Posted 7/4/2016 4:46 PM (GMT 0)
Thank you, cupcakegal. While mentally preparing to be supportive of this surgery, I may have gravitated towards the stories with the easiest recoveries and more instant happy endings. I have a tendency towards alarm when glitches occur and maybe I'm just not factoring in realistic recovery scenarios after a major surgery. I reached out here today because I feel like I'm starting to get pessimistic and I need to stop that before it translates into a worried conversation with my son. I really appreciate that you explained the hiccups in your own recovery. I will try to see this delay in a return to health as simply part of the process and not worry so much. I'll also grab a pack of gum for him on the way to the hospital today. :)
Posted 7/4/2016 5:00 PM (GMT 0)
You sound a lot like my mom. She had seen me sick for so long she just wanted me well and when my final surgery took a bit to recover it was hard for her to be patient.

I understand your frustration. My first surgery was a resection and temporary ostomy and I was out of the hospital in 4 days and going out to lunch 1 week post surgery so when I had the total proctocolectomy I was really not prepared to have trouble eating and be stuck at the hospital. It was hard to see the light at the end of tunnel! My surgeon kept saying be patient but it was hard!

Somewhere after a month it was just like things magically started to get better. Others on here told me the first few weeks or even months feel like forever but it does get better.

I'm now 4 months post op and back to work, excercising, and eat a normal diet.
Posted 7/4/2016 6:53 PM (GMT 0)
That's all very helpful information. I really appreciate that you took the time to chat with me about what the healing process after this surgery can look like. I've been reading through a bunch of posts here all morning now looking for recovery stories that are similar to my son's and have found many. I feel way more reassured now. He has all normal labs, had a clear CT scan, incisions all look well.... It's just the healing process of the traumatized intestines that requires some more time, apparently. Instead of a frantic dialogue in my head that shouts, "It's been two weeks already! Why isn't he better!?" ..... I'm now working with an inner dialogue that says, "It's only been two weeks! He's making great progress and will be home soon!" Haha. I'm so glad I reached out here for help this morning!
Posted 7/4/2016 11:36 PM (GMT 0)
I'm glad this community helped you! It was a great help to me while recovering. Except for the ileus hiccup it sounds like he is on the right path and everything is going as planned. My CT showed fluid and I was sent home with a drain which was not fun!! Still by 6 weeks I was eating pretty good and already cleared to exercise.

I hope your son gets to go home soon and continues to heal well!
Posted 7/6/2016 11:47 AM (GMT 0)
Patience is key. The intestines don't like to be messed with, and your son's were messed with a lot. I had ileostomy revision surgery last week, was sent home the next day, and was back in the hospital one day later with an ileus. I'm still here in the hospital. Like your son, my ileus is gone and I'm handling liquids, but solids are more of a challenge. Last night I was finally able to eat some solids without massive discomfort. The key is to go slow and eat very small quantities. Never force down anything. Everything will adjust and start working eventually.
Posted 7/7/2016 3:07 PM (GMT 0)
They are considering a second surgery to make the area around the stoma output less tight... His surgeon has said that in 20 years she's never had to edit her surgery, but that she thinks this may be necessary if he doesn't start to be able to move stuff through the stoma. Right now they have a catheter in the stoma which has helped things move through. He is on full liquids, though, not solid food. They are waiting to see if this resolves on its own in the next day or so.
Posted 7/7/2016 3:49 PM (GMT 0)
Bania, is what my son's doc is proposing a revision? I guess that's what's going on. She suggested his stomach muscles are too tight. Everything seems to get trapped in his intestines. The catheter opened up the stoma and he had output. He texted me this morning that not much came out overnight, but I don't think he had much to move. I am going in later this morning. I'm hoping that after he eats his full liquid breakfast that his stoma is more active.
Posted 7/7/2016 4:25 PM (GMT 0)
Yes, that would be a revision. Revision surgery is any type of surgery that involves changing an existing ileostomy/colostomy somehow. Sometimes they change the location of it, sometimes it's something else. I had a stricture right behind the stoma, so they cut out the stricture (and existing stoma) and pulled the intestines through the existing hole in my abdomen to create a new stoma. It's good your son's surgeon is taking this seriously and is willing to make a revision if necessary. Is your son able to walk around? Walking is a great help to getting things to move.
Posted 7/7/2016 9:47 PM (GMT 0)
Yes, he is walking a lot. They gave him an extra liter of fluids in an IV and some miralax this morning after a night of very little output. Very quickly, his stoma began putting out a lot. they are going to give him solid food tomorrow, and if he has 24 hours of the stoma working as it should after eating solid food, they will not do the surgery for now. The nurse was telling us that they think it was ileus at the end of the stoma because they cannot actually see anything that would cause the stoma not to work. His doctor feels like it's the right size and the scans showed nothing blocking it anywhere. The catheter is still in his stoma. I asked if the catheter is removed will the stoma stop working? They said the catheter is not making the stoma work, it's just begun working on its own. That's why they suspect the ongoing issues have been related to ileus. I have to say, ileus is no small complication. It's been horrible. The whole NG tube episode for days.... Wow. I hope this is over soon.
Posted 7/7/2016 9:50 PM (GMT 0)
She's willing to make a revision, but has been unable to determine if that will be the cure to the problem or if it will further complicate his recovery. Today it appears they've decided that in the absence of something they can point to, it must be ileus that has been holding up his recovery. Thanks for the insight, Bania! I hope your revision surgery fixes your issues.
Posted 7/7/2016 11:30 PM (GMT 0)
Good luck with the solid food I hope his stoma cooperates! An ileus is a pain and I feel like even when they say the ileus is mostly gone it still takes a bit for the intestines to be fully going like they should. It sounds like his surgeon has a good plan and is being cautious.
Posted 7/8/2016 1:04 AM (GMT 0)
Oh, so sorry your son is going through this. I had a similar problem two days post op. One of the surgical residents told me I could eat, so, eat I did. OMG....that evening everything and the kitchen sink came up, all over the bed, all over me, etc.. They had to place the NG tube back down. My surgeon was furious with the resident for telling me I could eat. He said, "Your body will tell you when you can eat." I think the resident was trying to clear out as many patients as she could prior to the 4th of July holiday. This was in 2010. The NG tube stayed in for three days. When I finally was able to eat, they kept me on a liquid diet and soft foods for a few days. I was hospitalized for 11 days total. The advice my surgeon gave me was to CHEW, CHEW and CHEW some more. Very important to chew thoroughly. So far, so good. I'll be 70 in August. Best of luck and health to your son.
Posted 7/8/2016 2:26 AM (GMT 0)
He's been in the hospital 2 weeks and a day as of today. He was just shaking his head at that reality today while we walked around the wing. We can't believe he's still in the hospital.
Posted 7/8/2016 7:24 AM (GMT 0)
It's tough but I bet he'll be surprised once he finally does get out how fast he feels himself again. Just gotta stay strong and walk alot!
Posted 7/8/2016 3:22 PM (GMT 0)
Christine, OMG your story sounds just like mine - right down to the date! Had my surgery Thursday 6/30, my surgeon put me on solid food the next day and discharged me despite my protests because he didn't want to have to come in on the 4th of July holiday weekend! I was back in with the ileus on Saturday and didn't get out until Wednesday.

Jay, just a heads-up from my experience with the ileus. The stoma producing output is only the first step. I got plenty of output from it for about two days but still wasn't able to eat/drink much at all. They say the stomach is usually the last part of the system to "wake up", so for me while stuff was coming out the bottom it still got stuck at the top. Eventually the stomach woke up and it got easier to eat. It's still not totally back to normal but is much improved. I'm home now and feeling pretty darn good. Virdent is right, once your son is out he will feel better quickly. Remember, he is doing all his healing from the surgery in the hospital while he is battling the ileus, so he'll be that much more ahead once he gets out.
Posted 7/8/2016 4:24 PM (GMT 0)
Bania, my operation was six years ago. It was the resident, not my surgeon, who told me to eat. My surgeon kept me in the hospital 11 days. I also had an episode, which, I believe was sepsis. It happened three days before my being discharged. I remember feeling very cold that day. My husband had the nurse place about seven blankets on me and I was still cold. Anyway, on evening rounds, the nurse couldn't get my blood pressure, she had to retrieve one of those old fashioned cuffs. It was 70/40, my temperature was 105 and pulse 150. I never saw people move so fast in my life. All the doctors came running in, IV's were placed in both my arms, blood cultures taken, etc. All I wanted to do was sleep!!!! LOLOL. I felt NO pain, just extremely sleepy. They wouldn't let me sleep all that night. The resident on duty kept popping into check on me every fifteen minutes. They even notified my surgeon in the middle of the night. I was the first patient he saw in the early a.m. and he told me I scared everyone to death. It was the nurse who told me it was sepsis. Oh well, cannot complain about the excellent treatment I received.
Posted 7/10/2016 7:03 PM (GMT 0)
Any update? Did he eat? Is he doing better? I agree with virdent, once things start moving, it should be smooth sailing from there.
Posted 7/12/2016 1:54 AM (GMT 0)
So he came home yesterday. 18 days after his surgery! Wow. Wasn't expecting that long of a hospital stay. His stoma continued to hiccup along with an on and off recovery until Saturday when it just started being more reliable. They sent him home yesterday because 5 full meals had been eaten and passed successfully. He's really super tired and not very confident about his recovery because of the unanticipated lag in getting released. I think we're both exhausted and somewhat terrified of a blockage or any more delays in getting on with life. So, some emotional burnout seems to be the most challenging aspect of things now. He sees the home health nurse tomorrow which is good because despite a lengthy hospital stay, he really didn't get a decent education in how to take care of his stoma. He's a nervous wreck about it. I think he's just had a bad start all around and some time to let the dust settle will help the most.
He is signed up for a summer course at his college which begins August 1st. He needs the class in order to progress into some upper division classes. This health ordeal has set him back slightly with the medical leave he had to take. Do you guys think he'll have enough energy by then? He's been shuffling around the block and trying to get some sunshine and regain stamina. It's shocking how fatigued he is.

Post Edited (JayBee1) : 7/11/2016 8:01:14 PM (GMT-6)

Posted 7/14/2016 2:06 AM (GMT 0)
He just has to take one day at a time and not try to rush into anything. He doesn't want a set back. How is his stoma working? This is just going to take time. Tell him not to get discouraged, chew his food very well and drink lots of water.
Posted 7/14/2016 4:26 AM (GMT 0)
It's been really very positive since he was discharged from the hospital. He saw his doctor and his stoma nurse yesterday. They're very clutchy with him after the way things went initially. The problems were entirely caused by his body and not the doctors. It's just how things evolved. I think it's amazing how far he's come in his recovery in just the past 4 days. How the stoma just starts working after ileus. He's eating a lot and trying to walk and get out. His lower back hurts a lot, but we think it was caused by all the forceful vomiting caused by the ileus. His lower back has hurt since that began. For anyone contemplating this surgery.... You know, all I can say as a mom of a child who has gone through this is to prepare yourself for potential setbacks in your recovery. Have a lot of people in the know who can provide encouragement and keep you focused on your recovery. This is not an easy surgery. It's a big deal. But it addresses a "big deal". Whether that's colitis or crohns. These are really tough diseases. And battling them is not a walk in the park. But the ileus ends, the pain ends, and the acceptance and healing begins. It's going to be ok.
Posted 7/14/2016 2:41 PM (GMT 0)
I am happy to hear he's doing better. I guess now that the ileus resolved, you can likely expect a lot of progress quickly. I feel bad that it's been so difficult for him, but you're right, it's his body and no one could have predicted this. It's just great that he's doing better and he doesn't need to worry about another surgery. I was out of the hospital really quickly after my collectomy, but I met with the nurse in the hospital and I wasn't comfortable changing the pouch on my own at all. I was very nervous and scared when I got home. I kept thinking 'what if something happens and I can't handle it on my own'. I met with the home health nurse 2x, and after meeting 2, something did happen... it leaked. I was at home alone, this was only the 2nd week I was with the stoma. I called her and she offered to come back, but I figured it was time for me to try on my own. I did and it was easy. After that, I was so much more comfortable on my own. I think the sooner he starts doing everything himself, the sooner he will feel a lot more confident about it. Before you know it, he will be a pro.
Posted 7/14/2016 9:06 PM (GMT 0)
Awesome, I'm glad things are now headed in a positive direction! It is amazing how quickly things start improving once everything starts healing. At my 6 week follow up I remember thinking wow this as all just 6 weeks ago.

I go to my surgeon tomorrow for a follow on my butt wound and I'm almost at 5 months and can't believe how normal everything is now. At the time it seemed like forever but now I can't believe I'm symptom free and how routine having a stoma seems now!

I know at his age he may not be as inclined to seek out a support group but I just went to the one in my city and it was great! And there were spouses and a mother there not just the actual patient are welcome. I found my group online and asked ahead the size and age of the group. Although it is mostly an older demographic there about 8 of us in our 20s or 30s. It was also nice to see a couple of the older people who have had their ostomy for 20 or 30 years with no issues. The leader of my group is 50 and had her ostomy since she was 17!!
Posted 7/16/2016 2:31 AM (GMT 0)
He actually picked up his bass and played today for the first time. Was wondering how it would go with the bag and the stoma placement. He played until he had blisters. Haha. The new plumbing didn't interfere with his passion, so all is good in his world.
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