Posted By Posting
Sep 15, 2007
sen9902
Mom of two gerdlings
3 yrs. post-nissen stomach pain
I have two GERDlings, ages 5 & 8, both had last resort nissens: 5 yr. old in 9/04 at age 2 and 8 yr. old in 4/05 at age 5. My 8 yr. old is doing great, a real success story! Although I do not regret the nissen choice for my 5 yr old, she still has issues with eating due to the tightness of nissen. She had surgery for a blocked esophagus two times due to post-nissen swelling and her eating too fast. We have to watch her eat one-on-one at every meal to slow her down and remind her to drink after every two bites to push food through nissen. My problem now is that she has complained off and on of stoamch pain for at least nine months if not much longer, but now it has gotten pretty bad. She says her stomach hurts her after eating breakfast, snack, lunch and dinner. Her ph probe from nine months ago resulted in only 15 episodes, but she still takes 30mg. of prevacid. During the endoscopy nine months ago, all looked really good in her esophagus. I have no idea what the problem could be. We are working with the GI and now trying a dairy/lactose free diet which doesn't seem to be making any difference. She tested free of allergies one year ago. She can be distracted and doesn't moan all day, but is still suffering from pain pretty much all day. It has gotten worse since August. She is a basket case by the end of the each day and breaks down in tears after dinner. I am completely stumped. Any ideas?
Sep 16, 2007
sen9902
Mom of two gerdlings
3 yrs. post-nissen stomach pain
I forgot to mention that my GERDling still has her g-tube for venting purposes, but venting it doesn't help her chronic stomach pain.
Sep 16, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Dear Mom of Two Gerdlings
Dear Mom of Two Gerdlings, It is quite unusual to have this level of pain and difficulty eating following a fundo. Did she have eating issues before the fundo too? I am wondering if the swallowing and pain are just associated with the surgery or not. I wonder what the surgeon says about all of this. Have you considered a second opinion? feeding evaluation? Something must be done to help your daughter feel better. Jan
Sep 23, 2007
iszabelle'smom
Izzy born March 17, 2007. Diagnosed @ 2 weeks with GERD and Sandifer Syndrome. Takes Zantac 1.5ml twice a day as well as Prevacid 15 mg in the am and 15mg in the pm. Has milk and soy allergies, and the only formula that she can use so far is Neocate. Huge family history of GERD.
I'm 29 now, but had the fundo done about 5 years ago. I too have been having stomach pain lately. It hurts and isn't the same kind of pain as I experience with acid reflux. I'm also having more problems lately with gas and bloating. I'm thinking about following up to see if something has changed. The doctors did my fundo too tight as well, and I often get food stuck. That is incredibly painful.
Sep 24, 2007
sen9902
Mom of two gerdlings
3 yrs. post-nissen stomach pain
Update: We tried 7 days of milk-free diet, then introduced dairy-based lactose-free milk products to see if milk or lactose could be the problem. After only 7 days milk-free, when we re-introduced milk based lactose free milk products, Madeline experienced severe migraine headaches and stomachaches. She was sent home from kindergarten for her headaches. As a result, the GI said to stay off milk products. She will be allergy tested again on Wednesday. She was tested before at age 3 (she's now 5) and was not allergic, so I am guessing that she may be just milk-intolerant, if that? BUT I still don't think milk is the whole problem, since even though cutting out milk has eliminated the outbursts of severe pain and headaches, she still complains of a chronic stomachache (a 1 on a scale of 5). The severe milk pain was a 5 out of 5, and so was the migraine-like headache. I printed out a chart of smiley/sad faces on a scale of 1 to 5 for her to tell me how her tummy feels. Although I was sad for you, I was stunned by Iszabelle's mom's post. I had never heard of anyone else getting food stuck in their nissen like Madeline. Do you have to drink every two bites like Madeline does, to push the food through? How long will this go on? She has to have an aide with her during meal/snack times in kindergarten to remind her to slow down and drink after every two bites. I know Madeline's nissen is tight and a bit problematic for feeding issues, but it seems to have done the trick for her severe reflux, changing her entire life for the better. My 8 yr. old daughter had a nissen done when she was 5, but she didn't have the food blockage or stomach pain problems that Madeline has. Anyway, any other ideas about her chronic pain are still and always welcome. We go the allergist this Wed. and the GI on 10/5. Maybe after that, as suggested by Jan, the surgeon would be a good person to visit if we still don't have answers. I am so hoping to avoid that, hoping it is dietary or reflux related. Her last ph probe 12/06 was nonremarkable, so I can't be sure it is reflux related and not surgical. I can't imagine that the surgeon would even be able to tell anything without going back in and looking, which I don't want to do if not necessary. Ugh! Thanks everyone! Susan
Sep 25, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
Dear Susan, I have been chatting with a family facing similar choking/pain issues post nissen. It is distressing to me that the issue is still occurring so long after surgery for your daughter and Izsabelle's mom. While it is common to have choking and the sensation of food getting stuck in the weeks after surgery, I am not sure if it is common to have these issues years post surgery. I would ask the gi doctor or surgeon for their insights on this. My guess is that the fundo is wrapped pretty tight and won't allow food to pass. another guess is that there is a hernia. I know you don't want to hear any of this! I am not suggesting that she needs the surgery again. I have heard of widening the area via an endoscope. I am glad you are finding some pain relief with diet. I hope you have some good resources to help you with the diet detective work: nutritionist, allergist, etc. Jan
Sep 28, 2007
iszabelle'smom
Izzy born March 17, 2007. Diagnosed @ 2 weeks with GERD and Sandifer Syndrome. Takes Zantac 1.5ml twice a day as well as Prevacid 15 mg in the am and 15mg in the pm. Has milk and soy allergies, and the only formula that she can use so far is Neocate. Huge family history of GERD.
I was told that my wrap has been done to tight. They have mentioned that they can send a scope down with a balloon attached, inflate the balloon to kinda of stretch it alittle. Food doesn't always get stuck tho, let me say that. It happens more often when I don't drink enough fluids, or if I don't drink before I eat or during. Also...it happens if I eat too fast or don't chew well enough. I am back on medication for my stomach...but yes it has improved with the surgery. I think I need to go back in tho, because I am still having issues lately with refluxing. Which, of course, can be attributed to the weight gain from having the baby.
Sep 29, 2007
sen9902
Mom of two gerdlings
3 yrs. post-nissen stomach pain (another update)
Thanks everyone for your posts. Although we aren't to the bottom of this stomach pain, we learned through allergy testing this week that Madeline (age 5) is quite allergic to soy and peanuts, ugh. We are also continuing the milk-free diet. We see the GI next week. I am definitely afraid to have the nissen stretched because it is truly a success, even with the tightness trouble. Before the nissen, Madeline was another child, absolutely miserable, inconsolable. The nissen turned her life/our lives around. She is such a joy. I'm hoping as she grows older, she will learn to monitor her own eating/drinking and will learn to eat slower and drink more. We'll see. In the meantime, we're still working on the stomach pain, trying to figure out if there is something else dietary wrong or if it structural in nature. Thanks everyone!
Apr 08, 2008
sen9902
Mom of two gerdlings
Anyone have a nissen loosened?
After six miserable months of believing that my dd has severe non-IgE food allergies, they now think that it is her nissen that is causing her trouble. She has had it for 3 1/2 years, but has since required one on one monitoring while eating, even in kindergarten, since food has trouble passing through it. She had two surgeries for a blocked esophagus after the nissen. She experiences extreme gasiness and stomach distention whenever eating. They also discoverd through biopsy that she is severely lactose intolerant. Once we stopped dairy, she converted from chronic diarrhea to severe constipation. The good news is that although the doctors thought she was allergic to soy, peanuts, tree nuts, peas, beans, carrots, sesame seeds, sunflower seeds, corn and mustard, they now think she may not be allergic to any of these and they might all have been false positives on the scratch tests. The allergy blood tests were negative for all, but they treated her as allergic due to her severe stomach pain after eating these foods. We now may be able to get her off the g-tube supplements (Neocate Jr.) and reintroduce all these foods. If loosening the nissen is successful, we may also be able to get her g-tube removed for good. We'll see. My older dd had a nissen at age 5 and is now 8 and hers was very successful. Anyway, has anyone had a nissen loosened? How did it go? How did they do it and how long was the recuperation? Was it successful? I tried doing a PAGER search but surprisingly didn't come up with anything. Maybe I searched the wrong words. Thanks!!
Apr 09, 2008
pattirow
Hi there. My son had his Nissen dilated with an endoscope at 2 weeks post op. He wasn't able to swallow anything food wise and was even having difficulty with his saliva. Unfortunately for him that was just too soon to do the dilatation and it caused his Nissen to come undone. However, our situation was totally different. I hope your daughter does well and that the dilatation helps.
Check with your
doctor first!