I need answers, please help!

[Aeirin 4]

I am currently almost 6 months post op for my original procedure and am writing this from my hospital bed. I am unable to tolerate oral intake of food or fluids of any kind and am being fed via a nasojejunal tube (NJT) and TPN via a peripherally inserted central catheter (PICC) My surgeon along with many others that have consulted on my case are at a complete loss for what is going on and why I can't tolerate anything. I'm reaching out to fellow people who have undergone bariatric surgery in the hopes of finding someone else with a similar experience to maybe get some opinions/answers. In order to do this I will start from the beginning and tell you all my entire story. I know it's long but I am desperate so please bear with me and read to the end. I will try to explain everything but also be as brief as possible to keep it as short as possible.

I had surgery at the end of November 2023. It was a One Anastamosis Gastric Bypass or "mini" bypass. The surgery was routine and there were no issues whatsoever. I couldn't tolerate fluids and my intake was too poor to be released from hospital and progressed to vomiting every time I drank anything. Was diagnosed with a stricture and it was dilated and I finally started progressing. I was discharged from hospital finally almost 2 weeks post op (booked in for further dilatations at regular intervals to slowly stretch the stricture) and was home for less than 24hrs before it began again and my surgeon readmitted me and I underwent another dilatation. Upon getting back to my room I started violently vomiting and no amount of antiemetics would settle it. Emergency CT scan confirmed the stricture was perforated and my stomach contents were leaking into my abdominal cavity. I developed sepsis and had a nasogastric tube inserted for drainage. I underwent IV antibiotics and was later rushed to surgery to repair it, however due to the damage from the infection, it required a conversion to a Roux EN Y Gastric Bypass (RYGB) and I needed my abdomen washed out and other infected tissue removed. It took about 5 hrs. I spent a further month in hospital recovering, initially on TPN to supplement my oral intake but was wraned off as my tolerance improved and was finally discharged. At this point in time I had progressed to a pureed diet. I was by no means meeting my requirements but the benefits of being home vs hospital given everything outweighed the negatives and my surgeon planned on seeing me weekly as well as my dietician.

Now here is where is starts to get weird and my real troubles began. Just over a week later I woke up one morning and had a sip of Water (with a few drops of cordial to break the surface tension) however as soon as it went down I experienced a wave of nausea. It was different from before, I can't really explain the difference but I just ignored it believing it would go away (Denial as I just wanted to get on with my life and get back to work and due to the conversion surgery, my surgeon had created an extra large opening to account for my body closing the join so that it would end up a normal size.) I started experimenting with foods and fluids, different textures, consistencies, temperatures, etc. I tried absolutely everything I could think of. About a week or so later and my intake was getting progressively worse and I was once again admitted and went straight for an endoscopy (My 3rd since 1st surgery) to dilate the suspected stricture but there wasn't one. I then underwent a barrage of tests and every general and GI surgeon/specialist in my town came and consulted on my case, as well as my surgeon consulting doctors from all over. A NGT was eventually inserted and enteral nutrition (EN) started but was not tolerated and the tube was advanced into my intestines to be a NJT, which was then tolerated but the focus was on trying to get my oral intake to be adequate. I spent weeks in hospital trying different medications, getting tests and ruling out different conditions. I was discharged on EN with the NJT on 16 hour feeds at a rate of 50ml/hr which was not enough to meet my nutrition requirements but was the Max rate I could tolerate and the belief at this stage was that the nausea would go away and I'd be able to eat again.

On the 8th of May I was admitted for a gastronomy tube insertion into my remnant stomach via laparoscopy as it was finally decided that this problem was not going away and by this stage I had lost 38kg (84lbs) and was severely malnourished, despite increasing my feed rate to 60ml/hr (still not enough to meet nutritional requirements) The purpose of the gastronomy tube was not only to have a more discreet way of feeding and for comfort and whatnot but because the tube is in my remnant stomach, I should be able to tolerate a much higher rate to actually meet my nutritional requirements and spend less time attached to the feeding pump. Feeds were commenced at 20ml/hr the next day but I developed severe pain and discovered feed had soaked the dressing around the tube. I was yet again rushed into surgery as the tube was leaking. Another NJT was inserted along with a PICC line and both EN and TPN were started to maximise my nutritional status while we wait for my body to heal around the tube in order for that leak to stop happening again. I've been on IV antibiotics and whatnot since as well. I developed a Fluid collection in my abdomen and needed a percutaneous drainage which failed as the fluid was too thick to aspirate and a minor infection at the insertion site and it was believed that there was a fistula however luckily that was not the case. However yesterday I had a fluroscopy in which contrasted was put into the tube to see what happens and whether it's now working correctly and that caused me to violently retch as my body tried to expel the fluid from my stomach but as its not connected to my oesophagus anymore, it was unable to do so. This has now lead me to start worrying about whether whatever issue is preventing me from tolerating anything going into my pouch is affecting my remnant stomach too. I'm now facing the prospect of permanent EN and TPN for the rest of my life and I'm not even 30. So if you or anyone you know has any ideas or similar experiences or literally anything, please let me know. Even if it's just a chat because I feel so incredibly alone in this.

To anyone that made it this far, I appreciate you taking the time to read this and thank you in advance for any responses. I'm happy to answer any questions you may have as well.

[ShoppGirl 3,428]

I have absolutely no relevant experience or advice but want to say I’m sorry you are going through all this and I hope you get some answers really soon.

[catwoman7 10,939]

wow - this is awful. I haven't heard anything this bad before, but the mini-bypass isn't very common in the US (and.I think most of us on this forum are from the US). Although even among people on here who've had mini-bypass, I haven't heard of a case this bad before. I'm so sorry you're going through this.

[SleeveToBypass2023 1,960]

I haven't had anything like this, and I've had quite a few complications and surgeries as a result. I honestly don't know what to say except my heart hurts for you, I'm sending you positive thoughts and vibes, and I'm hoping they will be able to figure this out soon.

[BlueParis 87]

I'm so sorry you're going through this. Take care. Stay strong.

[Aeirin 4]

Thank you for your replies. I appreciate you all taking the time to read this post, it was my last ditch effort to make some sense of this mess before I could accept that I'd likely never eat or drink again.