Wow...where do I begin? I apologize yet again for taking so long to update. It’s easy to remember when I’m stuck in a hospital bed, not able to really “live” life, but then when I’m doing a little better I get lost in life and forget to update everyone. Whoops!

So the most prominent medical device in life right now is my J tube seeing as how she likes attention and will go to great lengths to get it! ;) I had called the surgeon’s office about the pain I was having soon after I got home because it was persistent and I was very unsure as to whether or not it was normal to be that way. Well, I was told everything was okay and to try to get up and move as much as possible. The surgical pain finally went away just as a new pain started. The new pain was very debilitating and wrapped around my left hip along with painful spasms right at the tube site. It got to where I couldn’t stand up all the way or even walk across the house without sitting down every few feet due to the pain becoming excruciating. I called the surgeon’s office about the new pain that developed because the way it was feeling would’ve been a sure sign of major complications if it were a G tube. It is crazy how much difference there is between a G tube and a J tube!! Well, this time I was told I was doing too much. Yeah, make up your mind people! :) I went along with their theory and decided to try to find a happy medium where I was moving but wasn’t overdoing. However, NOTHING was working and it was only getting worse. My surgeon ended up working me in a couple days later so he could take a look at it. Turns out the J tube was too tight and the stitches that were on the outside at the tube were very mad. So he removed those stitches and loosened up the tube a bit. By that evening I was able to actually stand up and move some without the excruciating pain! My pain was very mild and nonexistent at times.  Then, the other day, I bent over and felt a VERY strong pop/kick in my intestines. My heart sank...it felt EXACTLY like when the balloon popped a while back on my GJ tube. I just knew that’s what happened. I had a professional freak out fit and called Mom who was in Charlotte at the time with my sisters for a doctor appointment. I didn’t realize til after I got off the phone with her that there was still something holding my tube in. I didn’t know if it was the balloon still holding or just the stitches inside so I decided to check the balloon volume to see if it was holding anything. Low and behold there was 3cc in it so obviously it wasn’t popped. I decided to call the surgeon’s office to check what volume the surgeon had put in the balloon so I could make sure it wasn’t leaking. The nurse was so caught up in the fact that I actually messed with the balloon that she never would tell me how much was supposed to be in the balloon.  I’m sorry but I’ve had a tube for how many years now?? I think by now I know how to take care of one and how to be careful in handling situations! Anyways, after going around in circles for probably nearly ten minutes of her telling me how to flush it and everything, I figured at least it must not be anything serious and just brushed it off. Ends up I get a call about an hour later telling me the surgeon wanted me to go to the ER to get it checked out to make sure the balloon hadn’t displaced itself, ending up in the abdominal wall. I did NOT want to go but I knew I had to. I get there and they wanted to just inject dye into the tube and take an X-ray to see where it was....only I can’t have the dye. So ended up a doctor from the surgery team came in, deflated the balloon, pushed the tube way in, inflated the balloon, and pulled on the tube. Then, just to make sure, he did it again. However, he filled the balloon with 5cc instead of 3. Since I couldn’t have the tube study (dye and X-ray) they decided it was probably fine and sent me home without doing any testing to see. It actually wasn’t all that painful at the time but by the time the doctor had done all that it was quite painful. I chalked it up to it being irritated. My pain started escalating pretty rapidly so I went on trusty google to see if I could figure out what might be the issue.  I found where some patients with severe burning pain were told that it was because the balloon was inflated too much and was causing the intestines to spasm which in turn would create short term blockages which explains the pain.  So, who cares what the nurse might think or how many heart attacks she may have...I removed the 5cc from the balloon and replaced it with only 3. Bingo! The newly developed burning pain is pretty much gone now. I am having some deep pain that hasn’t improved though. I just wonder what that pop was and if that could be contributing to the pain. I did notice that the big dip in my abdomen that had been there since surgery (where they had tacked the intestine to the abdominal wall for the tube) is now gone. It’s a bit unnerving and I can’t help but wonder if that balloon could really be misplaced. Who knows?! I have my post op this afternoon so hopefully he’ll know what’s going on! I have gotten my feeding up to the goal rate of 100ml per hour. I only do 9 hours a day though because if I end my feeds too late I end up finishing right at bedtime and it makes me not feel so well. I’m just SO thankful I have a reliable tube now! I can actually get nutrition every day and I don’t have to go every week or two for a tube change either!!

Otherwise, my G tube and Hickman are both doing rather well! The blood clot that had been in my arm from the midline (when I was in the hospital) seems to be gone now. At least the swelling is gone.

Thank you so much for your prayers and your patience! :) I really appreciate all of my prayer warriors who faithfully read my updates and pray for me!

Taking Life One Crazy J Tube Moment at a Time...
Allison

Life With Calamity, Jane, & Henrietta :)

Still out of it with anesthesia and pain meds...
taken after my Hickman placement.

Hi friends!

I am so sorry for not updating sooner!

I had my J tube surgery on Thursday the 22nd of February.  Things went well with the surgery, and I now have two holes with tubes coming out of them, one in my stomach and the other in my intestines.  So...without further ado...meet Calamity the G tube and Jane the J tube! :)

Meet Calamity the G tube and Jane the J tube :)

Meet Henrietta the Hickman :)

I came out of J tube surgery sometime early Thursday evening and had the rest of the evening to recuperate (ha!) before being whisked away to radiology early Friday morning to get a Hickman placed in my chest.  Lovely!  Thankfully I got a sweet anesthesia team who very graciously “knocked me out” quickly and didn’t make me lay flat on the table before going under!  I was in SO much pain from them butchering my gut the afternoon before and laying flat just was NOT an option! I’m very glad I expected a lot of pain despite the surgeon saying about not being very painful. I came to the conclusion that he has never had J tube surgery done on him before! ;) Yeah....it hurt (and still does)....like, a lot! Anyways, I got Henrietta the Hickman on Friday the 23rd of February.  I actually didn’t have all that much pain/soreness from the Hickman placement. I told them it probably was kinda like the saying “when you have a headache hit your big toe with a hammer and your head won’t hurt anymore”....my gut hurt so bad my brain didn’t care about the Hickman! ;) Once the Hickman was in place, my nurse removed the 2 midlines they had placed while I didn’t have a central line. I was very grateful to only have IV lines coming from one source instead of a midline in each arm...that makes everything complicated! :) They had taken me off my Lovenox (blood thinner) the morning of my J tube surgery because they didn’t want me to bleed extra during the surgery nor did they want me bleeding into my abdomen afterwards.

The blood clot from the midline.

Well, the morning after they removed the midlines, I noticed a very large knot (nearly baseball size) in my upper right arm where one of my midlines had been. I recognized it from the get go and showed it to my nurse. The nurse got in touch with the doctor and upon seeing it, she ordered an ultrasound. Yep, you may have guessed it by now...I had a clot. Thankfully it was only superficial and wasn’t a serious clot. I was then started back on my full dose of Lovenox to prevent that happening with my Hickman!

The wrist of an MCAS fighter ;)

After 13 days in the hospital, I was finally discharged on Monday!  I am still in quite a bit of pain at the J tube site.  My 5 small incisions are healing very nicely.  I ended up in the ER on Thursday because my J tube site had begun to bleed on Wednesday afternoon.  We contacted the surgeon’s office to see what I should do or if it was something normal.  They wanted me to go to the ER due to the bleeding, pain, and me being lightheaded when I was up.  My hemoglobin was quite low in the hospital, so I think that made them a bit more concerned about it.  SO, as I said, I went to the ER on Thursday.  They did some blood tests and a CT scan.  I had low potassium and the CT scan showed a hematoma right at the J tube stoma.  They said the bleeding and pain are probably coming from the hematoma.  Yesterday, I got yet another IV infusion of potassium.  My potassium was low in the hospital and I was given 4 bags of IV potassium.  When I was discharged from the hospital it was still low.  Then the ER tested it on Thursday and it had dropped a little farther.  So I got 3 more bags yesterday.  I’m low on magnesium as well only they can’t really replenish it because I’m allergic to the solution they use.  That’s MCAS life for ya!

I’m very grateful to be home from the hospital with a reliable feeding tube!  I’m hoping soon this J tube will be healed and the pain will leave.  At least I can get formula every day and I don’t have to starve for weeks waiting to get my tube put back in place!

Thank you so much for your prayers and support throughout this difficult journey!

Life continues....
Allison