Fistula plug procedure - update (longish)

As most of you know for the last 13 months I have had a chronic gastric leak and a fistula where the draining occured. On September 15 I had something called an Enterocutaneous Fistula Plug Procedure in which a plug was inserted through the outer hole of the fistula through the stomach.

Thankfully I had taken a couple of 2mg Ativan which took the edge off of my nervousness and I was relieved when I was sedated. I remember at one point asking if they could "knock me out" but I was told no I had to remain semi conscious. Most of the procedure I was pretty much unconscious though I do remember waking up a couple of times because they were doing something that hurt. I was yelled at a couple of times not to move my hands. My guess was that they were afraid I would touch the sterile area. After several hours I awoke in recovery in considerable pain and was given a couple of percoset I think. Prior to leaving I was given a couple more for the ride home. My memories at this point are pretty sketchy. I don't remember leaving the hospital. I was in a wheelchair apparently. I vaguely remember getting into the car. Everything from this point is pretty blank as I think I was sleeping. My husband said that we stopped at Quick Check (A mini market) and I demanded soup, which he got for me, but I don't remember anything about it. We got home, I recall walking up the stairs and my husband promptly putting me to bed after giving me more percoset. My husband set up my TPN and plugged me in, again no memory. I recall him giving me more percoset somewhere around 3:00 a.m. as I had to go to the bathroom.  The next morning I awoke around 9:00 a.m. in terrible pain. The percoset just wasn't cutting it. I was taking 2 to 3 every three hours and it was barely dropping my pain level from a 9 to an 8. The next day I called and begged for liquid or something stronger and was told that I would have to go to Philly to see the doctor. Umm, that wasn't happening. We live 2.5 hours from Philly so to drive 5 hours round trip with me feeling like I had been stabbed wasn't going to happen. I called my primary who said I was too "complicated a patient" (WTF?). Yes, I will finding another general physician. I called Dr. Greenbaum and he said he couldn't perscribe anything and I understood his position which was that he wasn't involved in the procedure.  I remembered that I had a bottle of Vicodin and started taking both the percoset and the vicodin. This brought my pain level down to about a 5. By Saturday I was able to go to work but wasn't feeling wonderful and thankfully my coworkers were great about it. I popped lots of pain pills that weekend though.

So, what I saw when I took my dressing off was this blue disk and in the middle of the blue disk was the tip of the plug. I was draining a LOT. In fact, I had been told that I could start a liquid and soft foods diet, but everytime I drank fluids it would drain out of the fistula hole so I went back to being NPO. Six-seven days later that draining stopped and the draining from my stomach still continued. The tip of the fistula plug fell out of the blue disk, which it was supposed to do, but when I called the Interventional Radiology (IR) doctor he was concerned. I had an appt. the following Wednesday and he removed the disk. By this time I was feeling much better and was off of the pain pills. The suture removal which normally doesn't hurt was a bit uncomfortable. My husband said that they were about 4-5 inches long. Apparently the cramping I had been experiencing on deep on the left side of my stomach was from these sutures because as soon as they were removed I felt so much better.

Conversations with the IR doctor were interesting to say the least. He admitted that he really didn't have anyone to compare my progress to because I was the first person to have the plug used in this manner. He even said "you are, if not the first person in Philly, likely the first person in Pennsylvania. Unfortunately, I have no one to really compare your progress to."

The big question I am sure you are all wondering is "Is it working?" Well, I'm not sure yet. I want to say yes because I'm draining very very little, however, I do have another fistula track where the JP drain had been which is still open and draining, but that seems to be lessening as well. After the surgery I was told to progress to liquids and soft foods, but I've been moved back to being NPO. I did eat some dinner the other night when I had a dinner party and though I really was careful to not eat too much my dinner didn't stay down and I threw it all up. I think for me it was more that I had a bunch of different foods rather than just one or two. I'm not sure that Princess was ready for so many different types of foods. Since that dinner I've stopped eating, but started drinking a protein drink here and there. I'm calling the IR doctor to find out if I can progress to foods again given that the draining is nearly nothing.

The other reason I am being cautious in saying that the plug has worked is because my body has many times over the last 13 months stopped draining. Most recently it stopped for a bit more than 2 weeks so I'm somewhat cautious in calling it healed. It will take at least a couple of months of no activity for me to beleive it has healed.

As for how I am feeling? Well, pretty damned good. I'm really looking forward to being weaned off of the TPN. This coming week I will be on the hunt for some protein drinks. I got some samples from Vitalady and so far I like the IDS Vanilla Cinnamon, some sort of Cappiciano drink and the mix of Champion chocolate and Vanilla Cinnamon. I know that there is going to be no way that I am going to be eat 150 grams of protein a day so I'm going to have to rely on drinks. I found that I really like them mixed with half and half or milk. I know that milk has more carbs, but because I have to actually have 150grams of protein a day I'm going to go for all the protein I can get.

I have another appointment with the IR doctor in a few weeks. I'll update more then.

Oh, and totally nothing to do with the fistula plug, but I wanted to say that for the past two months I have been at the renaissance faire doing a LOT of walking and baking and cooking.  My weight since April when I went on TPN has been between 192 and 196 consistantly. WELL, I stepped on the scale the other day and my weight was 185!  I guess all that walking helped!

Warmly,
Maddie

So, I finally get some of your story, too. I really hope all the best for you, because complications and not being able to eat properly SUCK.

For more regarding what happened, here is a post I wrote to someone who was asking about a revision. The update part is about half way down.
http://www.obesityhelp.com/forums/ds/4247879/Consult-with-Dr -Roslin/#34918344

If you have any question hone just PM me.

Oh, Maddie! You've had such a harrowing time of it. I'm sorry you've been in such pain and faced so much frustration with your caregivers, not to mention the frustration of being NPO for so long.  I'm glad that you're feeling somewhat better, though, and congratulations on the renewed weight loss. I so much admire that you're able to do the Renaissance Faire stuff, everything considered.

Hugs.

-- Lenore

Hi Maddie!

I am glad you 'seem'  to be progressing!! ( still have permanent fingers crossed ) I work with some of these DR's and yes when you are given our famous twilight sedation you are not aware you are moving hand and trying to usually scratch your nose,  it is about keeping the sterile field OK.
'We have people that sing to us to talking through the whole thing and then swear they never had a procedure !!!  Sorry they could not get the right concoction to relieve the pain..

Like you I would be careful about if it is really working, as it takes a little longer for us to heal some
anyway, and with your fistula having been flowing sooo long,,, it will take time for it to seal and seal WELL....

Will keep critters on flight schedule and fingers crossed that this does it !!!  And all that walking did you a world of good... and like me I do enjoy NOT thinking about my body issues, just enjoy LIFE !!!      LOL

Good Job!!  and congratulations !!

Debi

good luck, sounds like you MIGHT be on the mend! woohoo!

Maddie. i am so sorry you are going through all of this! I had read your story a while back and really felt for you. I had a leak and they inserted a drain tube while I was awake to help it drain. It was horrible, but I can't even fathom(spelling?) what you have been going through! All I can say is try to keep your chin up and stay positive. T

I have a feeling that this is the answer for you.  Good luck with introducing foods.  You have been through so much and have been courageous throughout.  Continue to hang in there.

Molly

Congrats Maddies! I am so happy to here you are doing better. Wow 188 is awesome too. Hope things go in a positive direction for you here on out.

Maddie you sound like you're in such good spirits.  I'm so happy you feel like you are making progress.  That is fantastic.  I hope this works for you.  Crossing my fingers!!