August 26 - HH Repair & Wrap - Questions

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Day@time
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/5/2011 7:38 AM (GMT -6)   
Want to say thanks to everyone for their postings, its really helping me to understand this whole process. My journey is a bit different than most ---- I've had a large hiatal hernia for years. Had GERD for years but managed fairly well with Protonix. Had bouts of reflux/vomiting at times but nothing horrible. Had chest pain, heartburn, etc but kept on muddling thru. Started having problems with significant anemia and they started searching for cause. My hematologist was first to say he thought it was from HH and my gastro disagreed. They did all tests locally (EGD, Upper GI, Colonscopy, Camera pill, etc) and all came up pretty negative. They kept saying I was losing blood but clueless as to where. I live in SC, I decided this had to be figured out (had to get transfusion in Spring) so I had them refer me to Johns Hopkins in Baltimore. Gastro did CT of abd (didn't do that at home) and found my large hiatal hernia - no big deal - I knew that. Said it was so large needed repair. He did a PUSH, single balloon enteroscopy and went thru 2/3 of sm. intestine. Told me afterwards that my HH HAD to be repaired, he thought that's where bleeding was. Sent me to one of best laproscopic surgeons in US. I had surgery at JH on Aug 26. I was scared to death of wrap based on all that I had read. I had not stopped to think about complexity of HH repair (75% of stomach above diaphragm and on its side and partially twisted). He told me he would try his best to do thru scope (home told me impossible). He did a 5+ hr surgery and was able to successfully repair thru scope. Found multiple bleeding ulcers when he unfolded stomach - there's cause of anemia! I have been amazed at how little I have hurt, and swallowing has not really been an issue. I too, had a MONSTER headache, but quickly came to realize it was caffeine withdrawal and lack of sleep. He did a scope after surgery in OR while i was still out. Next day, Upper GI and everything looked great. Then, I was cleared for clear liquids. Clear liquids have been no problem.

PROBLEM: I am supposed to be on full liquids now. HOWEVER, every time I try to have something with MILK in it, I get HORRIBLE diarrhea!! It is liquid 10-12 times a day. I had NO problem with milk before surgery. Doesn't sound like a big deal until you realize that's no meal replacement shakes, no ice cream, pudding, etc. I can have sm amts of cream based soup but that's about it. I AM VERY FRUSTRATED. I am not getting much nourishment and I think it will slow recovery. Has anyone else had this problem? Any suggestions? I am supposed to be on full liquids for another week. He told me not to push it - I had a BIG stomach surgery.

Today my swallowing is a bit uncomfortable - I must be having that swelling everyone is talking about. I've gotten out pretty easy in that dept so far. Could be the pills I didn't crush last night - I just broke them into small pieces and took them - BIG MISTAKE. I felt bloated fm liquids and some probably got stuck. Little chest pain this am too.

I STRONGLY encourage ANYONE who has to have this surgery to get a surgeon who does it ALL THE TIME. I think the Drs in my hometown would've killed me. Don't get me wrong - we have good Dr, but my case was difficult. Even my great surgeon said it was one of the hardest he had ever done.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/5/2011 8:25 AM (GMT -6)   
Hi Daytime,
 
Welcome to Healing Well!  I will be back to write more, as my husband is anxious to get going...I just wanted to say hi!  Probably by the time I return, others will be by to welcome you as well. 
 
Glad you've joined us!
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/5/2011 8:57 AM (GMT -6)   
Daytime, There is protein drinks out there that are soy or rice based.
Try muscle milk, soy milk, rice milk, or almond milk. They can all be found at the local superstore.
You can blend regular chicken soup in a blender to drink.
Joy

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/5/2011 11:40 AM (GMT -6)   
Hi Daytime,
 
I see that Joy had been by to offer some suggestions already.  Your advice regarding finding the very best surgeon possible is so true.  If you've read many posts here, it is advice that is often given.  There is nothing more important than that.  If you have a great Nissen surgeon he will know whether or not you are a good candidate for the surgery, and know how to proceed with the surgery to ensure an excellent long-term outcome.  Good going!
 
I don't think you said when you had the surgery, but yes, the wrap will become increasingly more swollen, usually reaching peak swelling around Day 14. After that it begins its way down, so swallowing will gradually improve.  Swallowing can be very dicey during the early healing stage.  You're likely to have more and longer swelling issues because your surgery was more extensive.
 
Joy's idea of trying non-dairy milks is a great one.  Many are lactose intolerant (just because you are now, doesn't mean you'll always be) so there are lots of options out there.  Try making the things you'd make with milk, with one of the milks she suggested.  I have friends who drink flavored soy milk and love it.
 
You can blend almost any soup into a drinkable liquid.  If you have a taste for a cream soup, you'll either have to check with your local grocerystore and see if they have any that are soy based, or make your own!   I guess you'll just have to be inventive until things heal more.
 
Again, I'm so glad you've joined us.  Welcome to our Healing Well yeah yeah yeah Wrapped Club! yeah yeah yeah
Happy Healing!
Denise

Post Edited (dencha) : 9/5/2011 11:47:48 AM (GMT-6)


Day@time
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/5/2011 5:22 PM (GMT -6)   
Thanks for everyone's advice. I'm at day 10 and it is an "off" day. Hopefully tomorrow will be better. Sent husband out to look for Muscle Milk. :)

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/5/2011 6:35 PM (GMT -6)   
Hi Daytime,
There are definitely ups and downs--especially during the early weeks.  Hang in there!
Hope tomorrow is a better day.
Denise

Day@time
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/6/2011 1:03 PM (GMT -6)   
It's Day 11 and another bad day. Seems my system is not going to tolerate anything other than clear liquids! Apparently not just milk that sends me running (literally) to BR. Pure liquid again. Can't go anywhere, can't do much. Sigh. Am supposed to head for home from MD to SC Thur morning. Not sure how that's going to work out! (We're driving) To Dr for post-op visit and labs tomorrow - will be interesting to see what his take on this is. Last week was better than this one, which is very surprising to me!

Day@time
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/6/2011 1:03 PM (GMT -6)   
It's Day 11 and another bad day. Seems my system is not going to tolerate anything other than clear liquids! Apparently not just milk that sends me running (literally) to BR. Pure liquid again. Can't go anywhere, can't do much. Sigh. Am supposed to head for home from MD to SC Thur morning. Not sure how that's going to work out! (We're driving) To Dr for post-op visit and labs tomorrow - will be interesting to see what his take on this is. Last week was better than this one, which is very surprising to me!

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/6/2011 2:35 PM (GMT -6)   
Hi Daytime,
 
When you're sent to the bathroom do you have any other symptoms?  If you're having stomach gurgling after eating and it seems that things are going right through you, you're probably experiencing dumping syndrome.  In that case, you may have trouble with a lot of different things.  It is a part of the healing process.  Not everyone experiences it, but many do.  Most at least have it occasionally. 
 
At the early stage you're in things are very irritated and swollen, so dumping syndrome is a reaction to that.  It will subside as you heal, but in the meantime you're going to just have to deal with it.  The farther along you are, the less frequent it will become, until you are completely healed.  I was having an occasional bout past my year date, but it was rare.  I haven't had one in longer than I can remember.
 
Your surgery was more extreme and it's likely you'll have a more difficult recovery because of it.  At this point in the healing, everything is swollen and raw.  Things haven't settled into place yet.
 
I guess you'll just have to eat what you can to be comfortable, and test your limits every so often.
 
Last week was better than this one is EXACTLY what happens in the first two weeks of recovery.  You are headed toward peak swelling.  Things will get worse before they get better.  You are very near peak swelling.  It's to be expected that things are worse this week.  Unfortunately that is just a fact of healing from a Nissen!
 
Once you hit peak swelling, things will begin to gradually improve.  Swelling will go down, things will begin to settle into place, and you'll be on your way.  It's a slow process, but well worth the effort!
 
Try to surrender to the recovery and let it lead the way.  If you can just go with the flow and relax into your recovery it will be much, much easier.  If you struggle against what is, and wish for what isn't, you'll spend a lot of time feeling frustrated and discontent.  Hang in there!  You will heal and things will get back to normal.  It just takes time.
 
Patience...Hope you have a good doctor visit.  Take a list of questions! turn
Best wishes,
Denise

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 9/6/2011 2:44 PM (GMT -6)   
I found out the hard way that Muscle Milk is not a milk-free product. The label says so but the back of it lists the milk products it contains and there is a disclosure to people with milk allergies that it does contain milk products. I was unable to drink it for those reasons.

As my GERD/Reflux began to get worse prior to my August 1, 2011 NF surgery to correct the reflux, I developed a serious intolerance for milk and milk products which I still have to this day. I hope it goes away eventually but am not going to push testing the idea any time soon.

My surgery went well with no complications etc but my recovery has also been very long and drawn out. I'm trying to be patient and I'm counting my forward momentum in inches instead of miles as many people on the forum are blessed enough to be able to do but at the beginning of week 6 I have been able to see some improvement with my ability to eat more than soft or liquid foods and I was beginning to think I'd never eat again.

Not much tastes good to me yet even after 6 weeks but I'm sure that will improve with time as well. I had gotten so paranoid about eating anything before my surgery that food and I are still not best of friends at this point. Even water doesn't taste good to me at this point but I drink it because I know I need it and I have lost over 30 lbs.

I know how you feel about the limited amount of liquids or soft/frozen foods you can partake of at this point because I went through the same thing. People kept teasing me about getting to enjoy ice cream and pudding etc but I wasn't amused. I just had to tough it out until I could take things in that were not all of a soft consistency.

I think one of my biggest problems was becoming so weak due to my limited food intake that I just couldn't bounce back as quickly as I should have. I do think it can be less pleasant and a longer recovery when your dietary intake is more limited. But it can be done because I'm here to prove it.

I can only say I understand from experience a little about how you feel and I wish you the best. It may take some people such as you and me a little or maybe even a lot longer to get better but we will get there.

Don't give up. It won't help a thing.
Rita

PS - I have also had bile diarrhea most days after a gall bladder removal many years ago and continued to have diarrhea after my NF surgery until the last three days when my stomach/intestines seem to have decided to improve and be more firm in the elimination of waste. I don't know if it will last but I am happy with it now. Also I am happy with using Rice Milk in my cooking and on cereal etc. It's not a bad substitute.

Post Edited (halloweenbaby) : 9/6/2011 2:50:49 PM (GMT-6)


Day@time
New Member


Date Joined Aug 2011
Total Posts : 6
   Posted 9/6/2011 5:12 PM (GMT -6)   
Thank you Dencha and halloweenbaby for your guidance. Your exactly right, I am straining against the frustration. I had such an easy week last week I thought it wasn't going to be near as bad as I had feared. You're right about the bile diarrhea - it burns! I'm going back to clear liquids and my goal now is to simply get things quiet so I can get home. I'm also fighting another battle in that my hemaglobulin is very low - I may have to get blood this week too. I can stand the clear liquids, but the bad diarrhea makes me weaker - something hard to handle. I'm just going to try to settle into whatever comes. On the up side, I should be losing some much needed weight! My Dr seems a bit surprised by the diarrhea, wanting me to come in to make sure not an infection. It had settled down by the time I spoke with a Doc, so she agreed to let me wait, but to come in if it returned. Then, I thought I had narrowed it down to milk and stopped it. But today, thin potato soup caused same reaction. I will talk to them about it tomorrow. I just hope I can leave for home Thursday. This forum is tremendous. I greatly appreciate all the input and I'll try to buck up and shut up the whining. Thanks.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 9/6/2011 6:20 PM (GMT -6)   
Hey, Daytime,
 
You can whine all you want.  Just know that what you're experiencing is within the realm of "normalcy" when recovering from a Nissen.  You are likely to have some bigger difficulties because of what you've been through.  Most have a much simpler procedure, and the difficulty of your procedure will certainly affect your recovery. 
 
I've read other posts over my two and a half years here, who suffered from diarrhea in the beginning weeks.  Others here suffered from constipation.  Go figure.  Like GERD, a Nissen recovery is individual.  What one can eat without trouble, another struggles with.
 
Just hang in there.  It'll get better. The second week is the hardest because swelling is at its height.  That's a constant among all post Nissen recoveries.
 
Once you get past this early healing, things will improve. 
Take care,
Denise
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