seeking member "Baza" about his redo and undiagnosed motility problem

Hi charliessjin

Very sorry to hear how low you are feeling..... If it's any consolation I know exactly how you feel. I've had many day waking up feeling as low as you have. I've had nissen fundo performed and I knew very early on mine wasn't a success. I've had exactly the same amount of reflux, burning and respiratory problems as what I had before. I have been "discharged" by the original surgeon when my ph prob didn't show significant reflux. My gp agreed a second opinion was needed. I'm currently paying privately to see another consultant who has been recommended to me. He has looked at my tests and agreed that an increase of pressure by 1 to my les is not really acceptable following a nissen and has informed me there is a 10% failure rate. Please please don't give up hope there is always hope, there are always other options and other consultants. Have faith. Hope you can start to feel better very soon.

Hey Charlessjin,

I'm sickened to read what you've been through, I'm just so sorry and I'll include you in my prayers. I was wondering what state you are in/where you had your surgery?

My heart and thoughts go out to you. There IS life ahead, I promise you, on our darkest day, through all the pain and illness, there is hope. Keep grasping for it no matter how far away it seems.

Warmly,
Tami

Thanks Barry, your right, its horrible, im in a prity dark place. Im from Manchester in the UK. I got my operation on the NHS at The Royal Infimary.

I was convinced from the get go that it didnt work, even a day after the surgery, but i put it down to post op symtoms. as the weeks went on, it grew worse and worse. started as just a sour taste and burning after meals, then became all day. now im just vomiting in my mouth all day. its strange, I can phisicaly feel the presure build and the contents of my stomach come up, kind of like the pressure when farting or burping, but not air, its burning liquid or food. happens every 100 seconds or so.

It also crossed my mind after hearing yoru story, if that the food was stoping at the wrap, then coming back up, but if its doing it weather ive eaten or not, kind of cancels that out, plus the Barium swallow was ok.

A part of me feels lots of regret, even though at the time, i didnt consider my symptoms to get worse, i just wanted to be normal and eat normaly ( Id been living off carrots and water for about a year, But could eat allot of it) I didnt even think for a second that I could actualy have more problems by having it done. He did tell me before the surgery that here is a change I might get some heartburn if i have too many pints and a curry, just like normal people.

Seperate from the probles im having, another thing im not sure about is how much we are suposed to be able to eat at this stage. and also how much pain is normal at this stage of recovery.

For example, im more or less 5 months Post op, and after eating 1 and a half crackers (Plain with nothing on top) I am full to the point of bursting, my stomach feels liek its got a huge rubber band round it. and also a little abdominal discomfort. After eating one small susage I also feel ive eaten too much and in discomfort. so my daily meal plan is kind of,

1 - plain rivita cracker for breafast

2 - 1 digestive bisquit at 11am

2 - 1 small sasuage at 2pm

3 - half a cup of soup at 6pm (Which i usualy cant finish)

I cant drink a full cup of water, if i drink any water with my meals, it feels like my stitches are about to burst.


Im still expirneceing some pain in my abdomen, especialy after eating or moving round too much or bend down.
I cant realy lie down either, i get very bad pains in my stomach. as though gravity is pulling on my stitches or something.


I was just wondering if all this was normal at my stage.

I remember seeing the eating plans i was given when i left hospital, for the 8 weeks after operation.
an deven now when I look at it, i couldnt eat that much if I tried, and would probibly be admited intp hospital if i did.

1.Yogourt, half a cup of fruit, and oraenge juice. 8am

2. glass of milk and scrambled egg 10am

3. ...etc


im starting to think, he has used too much of my stomach for the wrap, so my stomach is too small, which in turn is putting too much force on the new valve hes created, so as soon as I take a bite, the stomach is so tight, it sends it streight back up. I dont realy knwo whats going on, ive thought of a 1000 theorys.

But I felt the surgeon realy didnt listen totaly to what I was saying, he is convinced it is caused by the buildup of food and slow digestion. Which i think that is true about the slow digestion, as after I eat a cracker, I can feel it in there forever. Ive always been a big eater, and have done my fair share of weight lifting and working out, so I could eat a meal every hour or so. But because there is vomit coming up in the same way depite if i eat or not, and also the food comes up 1 few minuets after eating, that kind of tells me that it isnt in there long enough for it to "ferment" as he sugested. he also said that everyone has a normal amount of reflux each time they eat, and some people just feel it more. which rather anoyed me.

My surgeon is called Dr Li, and is considered one of the best in the UK, he even gets called to the US or Australia to perform operations. which is why i was so confident, a few people on here have also had him do theres and only had good things to say about him. but there is still room for error, no mater how good the surgeon is. Maybe im his first slip up.

I can understand why he isnt in a rush to just slap me back on the table and operate again. but its as though he doesnt bileve that it has gone wrong, he said he needs more solid evidence and is no propared to operate. I understand that, and im not sure my self that the wrap has riped, or come apart, without cutting myself open and looking, But a patient telling you that his symptoms befor the op were at a 40 and have gone to 120 after the op, usualy sugests something isnt right. and should carry allot of weight. but he insists i go to see his GI doctor as he thinks my only option is medication (im a lab rat once again, the reason they put me fo rthe surgery was because everything they tried to do did not work) (considering he told me he wanted to do th eoperation because im too young to spend my whole life on medication) now sudenley medication is the best thing in the world (even though im now taking 80mg of Nexium and 300mg of renitadine with no effect at all on the problem)


My wife has been looking for doctors in Japan and has found a few that look ok. Ive been wating probibly 2 years to go to Japan to be with my wife, and this illness is teh reason i couldnt go, all the apointments and tests have taken this long, But I had the operation date, and prepared the Visa to leave this month, because the Surgeon said id bee healed by then etc. so having this goal for 2 years, then for this to happen, and nobody knows what has happend, if they can help me, or what they can do, its realy broke me. I wanted to be over there with her, and have been promising date after date after date.

If I go to Japan and have the operation it will cost around £1000 which i didnt think was so expencive, and am willign to pay that if i could guarantee it would work.

But thats my thought exactly, if i finaly go to Japan and have this done, there is a chace it could fail or I could be worse than now. That would mean more tests, more investigation, that I just wouldnt have the money to fund. Its a bit of a toughy Im in. Plus, if i choose to go over there, it would take me months to do the Visa, by which time I would have had the tests and seen this GI doctor. I can feel my wife realy wants me to go to Japan to have it done, not only because she wants me to go over there, but she has no faith in the British mecical system, the waiting, the delays, the mess ups, (private i think is different).

My wife has MS, and of she feels something strange, she instantly gets an apointment the next day, whese she is offered blood tests, CT scans, MRI, and takes about 10 mins to get the results, I waited 6 months for the result of a barium swallow. Anyhow, i think im ranting a little now, I apologise haha.

But Its a tough one to call,

do i have faith that this GI can "cure me" or wait another year being a lab rat before the surgeon finaly acepts and re-operates.

or do I just think **** it, Im going to go to Japan and just pay for the operation and pray that it works.

My dear man,

After reading your latest post, I am almost feeling anxiety for you. I've been in your shoes with a surgeon that I had 100% faith in who ended up maiming me for life. Thankfully, nothing internal like you're experiencing but devastating nonetheless. We want so badly to believe in them and we almost NEED to see it through but I'm going to tell you MY strong opinion. It is nothing more than an opinion, but if it were ME in your situation, I would absolutely find someone else, now, not in a week or a month.

It sounds like your surgeon is one of those that is unwilling to believe that something he touched could be anything but perfect and he could lead you down a very, very dark path if you follow him. After 25 surgeries I have learned to be a very aggressive advocate for myself with my doctors if I am not getting results. I almost died letting them pressure me into waiting for treatment. I will never let anything like that happen again. Get what you need, don't take no for an answer, if he won't take care of you, NOW, then move on, quickly.

I highly suggest being sure that your next surgeon is a GASTRIC surgeon, one that has extensive experience with gastric bypass revisions. £1000 sounds like an amazing price to pay for a surgery like this. I know here in the United States it would cost over $5,000 US and I'm sure that is low. Please, just be sure you find someone that listens to you and takes action, asap. NOTHING about your story is right, it's just baffling and personally, I cannot comprehend how he hasn't taken you back for exploratory surgery to find out what has happened to you.

Again, these are just my own thoughts and feelings, I am NOT a medical professional but I have been through so much that I KNOW how you feel right now and I KNOW that you should not be going through this.

By the way, what you listed as your daily intake is shocking to me. It doesn't sound like enough to live on, much less being an appropriate intake for being 5 months post-op. I don't even want to tell you how I'm eating at one month post-op, it's a world away from where you are. Please, please take steps to get help asap. I apologize if I come across as strongly worded, I just am very concerned for your health. Keep us informed my friend.

Be safe!
Tami

Hi Charliessjin,

I saw Dr Li privately a couple of times, and that was enough for me, and if he says go and see my colleague Alastair Makin, don't walk - run, he's worse than useless!
You can see Dr Akhtar on the NHS and privately but if it were me I would look at Professor Attwood at Newcastle - you have a right to be treated anywhere on the NHS.

I would ask for a refferal from your GP

Hope you feel better soon,

Pink

Hi Charlie,

I haven't had the surgery yet, am waiting on a date as we speak. I know quite a few people so have been to Newcastle and I have been in contact with Professor Attwood about other things, and he seems very efficient, he also has a reputation amongst the medical community as being very open minded which for a surgeon is almost unheard of.
I don't actually pay for my private treatment plan it's a job perk, but I think the rough price of a private operation for a fundoplication is around the £5000 mark.

I believe Baza went to Newcastle for his redo it might be worth asking him who his surgeon was as he seems really happy with it.

Hope this helps,

Pink

Hi Barry

Pink has just told me that you had your operation done in Newcastle, I was just wondering which surgeon you had.

Thanks again my friend

Hey again Charlie,

My turn to answer and ask questions. =)

I read what you said about your consultation... gut wrenching to say the least. I'm in tears just imagining it and having your doctor dismiss what's happening to you and how you're feeling, just agonizing. I'm so sorry my friend. (1) How many consultations/follow ups have you had with your surgeon since your surgery by the way?

I had a partial wrap done on 10/23/14. A posterior wrap. Has your doctor said "posterior or anterior" in regards to your procedure? I wasn't able to have a full wrap because of previous gastric surgery.

As far as food goes, my dear, again I'm just aching to hear you say what you can ingest. At a month out TODAY I am able to eat anything in the soft food category comfortably. I can eat well over a cup of soup with saltine crackers, no issues. 2-3 eggs, a cup of yogurt, etc etc. You get the idea, it's normal, maybe even on the lucky side because of the partial wrap. As you know with the partial, there is supposed to be less difficulty swallowing and burping is possible. My doc wants me to be gentle and kind to my wrap and stay on softer foods for the next 5 weeks till we see each other again. I sip liquids all day long, never large amounts but I can sip with my meal if needed, which isn't often.

I'm no longer in pain. I took meds for about two weeks and now I have random discomfort but it's just that. Discomfort, nothing more and it goes away appropriately. The recovery was painful but not agonizing like yours. (2) Were you on good pain meds and for how long? (3)Also, was this your first major surgery?

You said "I understand they actually cut the liver free to get to the esophagus during the Op" ????? That's insanity, not on your part but if someone said that, especially someone from your surgical team? (4) Omg, please tell me where you heard that? That made my head spin! The liver is "lifted" away, up and back to free up the field of work but there should be NO cutting of the liver or the ligaments attaching it. (5) Did you get pictures? I have pictures of stages from my surgery and you can clearly see the tool holding the liver up AND the ligaments holding the liver in place. (6) Have you watched any videos of this surgery? If not I'll send a link so you can watch a few and gain a fuller understanding of what happened (rather what SHOULD have happened) to you. Self education is power.

Respond when you can, I'm here all day today so I'll check in often. Looking forward to hearing back soon. Be strong.

Be safe!
Tami

Hi Charlie, good luck and I sincerely hope you get better soon. Keep us informed as how you get on.
Barry

Man, Charlie I just wish you all the luck in the world. I hope that you are able to get in to see Dr. Horgan ASAP. Thank you for sharing so much of your journey with me, I'm left kind of speechless after reading all of that. I realize things are very different there and I just can't imagine how you are feeling right now. I'm here if you need anything. Please do keep us up to date with what happens next, I'm very hopeful you'll get some great help soon!!

Tami

Charlie,

Could you not have your pyloris valve opened to see if that helps your reflux, thus avoiding having to have another wrap?

Or alternatively an anti reflux stent such as the dua put in for a couple of days - if the reflux stopped with the stent in this would show that the wrap was the problem not the slow emptying.

I would have though your consultant should have given you some suggestions?

There was another poster on here I think CAGU who knows a lot about gastroperisis perhaps look at some of her postings for some guidance?

Hope you get some help soon,

Pink

Hi Charlie,

I can guarantee you that Dr Li will refer you to Dr Makin - please do not go to that man.
I think you need to ask your GP if you can have the gastric emptying study done - this is a 2-4 hour test that will show just how well your stomach is actually functioning.
If you do have some gastroperisis I have read that you can have botox in the pyloris to open it for a while, to see if this helps, before having the pyloric valve opened for good.
I think if it was me, I would definitely want to ensure that I actually had gastroperisis first before I did anything.

I am suspicious that your wrap is in fact not tight enough - it could be a combination of the wrap and some gastroperisis that is causing the problem?

Reflux to the extent that you have now, is not normal and it is certainly not normal after a wrap. I have similar reflux all the time and it's odious, it's constantly up my gullet and in my throat and I now regurgitate all the time. And I haven't had a wrap yet.

Have you tried pressing in in the LES area to see if it stops the reflux?

I think you need a good local GI, perhaps another PH test and a gastric emptying study to get the whole picture.

All the best

Pink

Hi Charlie,

Yes your GP will get a copy of your PH study, you could also ask your Gp for a good GI recommendation?

It sounds as though Baza was exceptionally pleased with his surgeon, so it might be worthwhile seeing him or Professor Attwood?

Do let us know how you get on.

All the best

Pink