It's been a very long time since I posted an update. On the one hand I would have had good news to share, but on the other hand I had a very scary thing happening to me.
After Finley's birth I posted about my very leaky stoma. We all put it down to having an enlarged tube tract after pregnancy. And I did my best at ignoring the fact that I couldn't really mobilize my tube any longer.
At the same time I noticed that my stomach was starting to work again. I slowly started to eat more foods orally, quickly getting myself off daytime tube feedings and onto a very varied diet.The couple years of a semi-elemental diet also seemed to have helped my intestinal system to recover its function and my absorption was a lot better as well.
Fast forward to January 10th. I wanted to flush my tube as always in the morning and suddenly had a very hard time flushing it. Actually flushing my tube caused me to almost double over in pain. Unfortunately, I didn't have a gastroenterologist anymore (they had all given up on me). I didn't know where to turn to so I mailed my dietician who got me into the GI department of one if the Viennese hospitals right away. The attending there suspected a buried bumper right from the start, something none of the doctor's had seen in the jejunum before because my type of tube (a PEJ) is not very commonly placed.
I had to come back the next morning to have an endoscopy done. Indeed, the internal bolster of my feeding tube had grown out if my intestinal lumen and could not be visualized any longer. They only found the location of my tube site because they pushed a guide wire through my tube. In an effort to give me a working tube they placed a small bore feeding tube through my J-Tube, very uniquely giving me a PEJ/J. There was nothing more that could be done and they sent me home. I freaked out! Everything I read on the web about buried bumper scared the shit out of me. It's a potential life threatening complication of feeding tube placement and so far it had only been described as happening in the stomach.
I kept asking my dietician and the GI doc who had treated me at the hospital to refer me to a surgeon, but they wouldn't do that and kept scaring me off with stories about intestinal resections gone bad - leading to short bowel syndrom etc. They kept saying they only wanted me to be operated at the University hospital because that was the only hospital that had a surgical intensive care unit. No wonder I freaked out! I wanted to live! I had a little boy to care for!
Every minute of my awake time I lived in fear that my bowel could perforate without me knowing or that I would develop peritonitis. It took me about five days to start to feel a bit better and more confident again. In reality I had probably had this buried bumper since 1.5 weeks after Finley's birth and nothing had bad had happened so far. The GI docs told me that they were not going to place another tube in me because "I looked so well", plus I was eating a reasonable amount of calories orally and just tube feeding 1000 kcal a night to make up for the extra breast feeding calories I needed. I then started pushing myself even more, I kept up with the 1000 kcal a night and tried slowly upping my oral calories. I started gaining weight back that I had lost (I was about 3 kg below my pre-pregnancy weight). In the last week of February I slowly started fading out my tube feedings, feeling that I could maintain myself without it. Finley had started eating solids and not solely relying on breast feeding any longer and that of course meant I needed less extra energy. I also bought nutritional supplements that I sipped on during the night. Whenever Finley came for a breast feed I would have my supplement.
On the 26th of February I finally made an appointment with a surgeon. I had found a very good visceral surgeon who worked at the University Hospital. The appointment was at 28th of February. I brought M and Finley with me (as Finley was still depending on my boobs too much to be left alone with M at home).
The surgeon was very kind and also curious and excited about my "problem". He also told me that the type of tube I had placed (a PEJ - endoscopically by GI docs) is actually a very uncertain thing and lots of complications can arise. He told me as opposed to the stomach and PEG tubes the small intestine is a lot thinner and the likelyhood that it attaches to the abdominal wall simply by keeping the tube secured tightly for the first few days is a lot less. The peristaltic of the intestine could also mean that the intestine would break free from the abdominal wall and that would be another potential life threatening complication. Obviously I was very lucky that nothing had happened during pregnancy.
Still we think that the pressure of my growing uterus must have caused the bolster to be pushed through my intestinal wall.
If anyone is reading this who is pregnant with a J-tube - please do not
freak out. All these complications pertain to PEJs (endoscopically
placed jejunal tubes with regular peg tubes with internal non-balloon
The surgeon told me that he would have to do a laparotomy, would scrape the internal bolster out with his nails (nice, I know) but hopefully he would not have to resect any of my small intestine - he would sew it shut with a strictureplasty. I was incredibly relieved to hear that.
I also told him that I was still breast feeding my little boy and that I wanted to bring him to the hospital with me (Finley does not take the bottle...). He promised me that he would organize that. Actually, one of the first things he told us during the appointment was that he was going to be a first-time father in four weeks.
He gave me a time frame of 2-3 weeks - something I could totally live with.
When I had not heard back from him after two weeks, I sent him an email and he told me that he had a really hard time organizing that I could bring my baby. After another week I mailed again, no response, my dietician, who works at University Hospital as well, tried paging him and found out that his wife had had the baby a few weeks early and he was on vacation... In the mean time my stoma was hurting very badly. For months now I had lived with a constant painful stoma, but the pain kept increasing and it was leaking pus very badly. It also bled all the time.
When I finally got my surgery date for April 15th I thought I would not be able to get through until then, but I did! In the end he elected to do my surgery at a private hospital here in Vienna (I have private insurance that covers it) - because they were very open to me bringing Finley with me (they simply put me on the maternity ward...).
This Monday at 7.30 PM I finally had surgery. The private hospital has a bariatric clinic and my surgeon asked the head of bariatric surgery to join him - so in the end I had two top notch visceral surgeons caring for me! Because of me being a breast feeding Mum the anaesthesiologist didn't give me any versed before the procedure and I was wide awake and chatty when they brought me into the pre-op area. I saw my surgeon all gowned up and we talked a bit about the surgery and than the anesthesiologist came telling me he had changed his mind about not giving me versed - and off I went into la-la land.
I woke up in pain and nauseated but so relieved to hear that everything had gone well. The nurses in the imcu were very kind and loaded me up on pain meds and anti nausea meds. I remember them telling me that my son was not taking a bottle. Therefore when the anaesthesologist came by to tell me that he was giving me all available non-opiates for pain, but that he gave me the option of one opioid analgesic - but then I would not be able to nurse for 24 hours - I knew I had to somehow get through the pain without opiates. At 11.30 PM they brought me up to the ward and a few minutes after being installed in my room I was already turned onto my right side and breast feeding my little boy. My husband slept on a chair all night - bringing me my boy whenever he was hungry. The nurse came in frequently to give me IV pain meds and also antibiotics. At 6 AM I felt ready to try going to the bathroom with the nurses help, painful, but I did it.
In the morning the head of the bariatric surgery clinic stopped by to tell me a bit about surgery - my own doctor was not going to come until the evening. Apparently an abscess had already formed and they had to use a sharp spoon to scrape out all the pus. Even though it was a 3 inch incision they had only put three stitches in so that any remaining pus could drain, otherwise I would get another abscess. They enlarged the stoma opening too so it could drain. Luckily they did not need to resect any small intestine but were able to sew the hole in my jejunum shut.
My own doctor added later that he understands now that I was in so much pain. The internal bolster was lodged deeply inside my abdominal muscles and apparently this is very painful (no kidding) - the infection added onto the pain of course.
By mid-morning it was apparent that I would not be able to take care of Finley without the help of M, and it was decided that he would be admitted as a care taker. This meant that we had to pay for him, but he would get four meals a day and a bed to sleep in. We were given a bigger single room with two beds put right beside each other - almost giving us a king size :-).
The first couple of days were hell - I not only had the incisional pain to deal with but also had "visceral shoulder pain" - happens when they put gas into your belly to visualize the organs and that pushes up your diaphragm. Every breath hurt and I had a very hard time turning on my right side to breast feed Finley. During the day Finley only feeds 3-4 times now and I did not need to do anything for him - M did everything. He really deserves the father of the year award! He took over all his care, fed him, carried him in his Mei Tai for walks... And at night Finley slept on his side of the bed (usually he sleeps with me) - and every single time he wanted to nurse he stood up and put him down. Nights for me were streneous of course. They are already streneous without post-op pain, but now even more so (my boy sometimes nurses every 1.5 to 2 hours).
The nurses loved having Finley around. They usually only have newborns here and Finley is a strappy 7 month old - and he flirted with every single woman that walked into our room!
I managed to only need IV pain meds on Tuesday, have been on oral meds every since then. The last antibiotic was given yesterday evening and today I got to go home!
It feels amazing to be in my own bed again (I definitely don't like hospital mattresses)! Yes, I am in pain, but I know I am healing well and it simply takes time.
My appetite is slowly coming back too, not all the way yet, but definitely an improvement noticable already!
I can't quite grasp it yet that I don't have to be afraid anymore that something could happen with his darned buried bumper - that it is really gone and I can start healing now!
So this is it - adventures of tubefree girl have begun now!