It seems like forever since I have been here, but it's only been 3 months.
Let's see what's been happening: Had emergency ileostomy surgery in Feb. Unexpected surgery in May and now more health problems - I think I need to change my blog from PH awareness to just plain old health issues - that would cover everything.
So my emergency surgery was in Feb. All went well for about 6 weeks, then I started to prolapse again daily. I had to keep pushing it back in to avoid more surgery. I just couldn't keep doing that so my surgeon learned about a new technique where they take the intestines and form "S" shaped patterns and sew them together.
On May 14 I had the new procedure done and everything was going fine until I got some horrible pains in my lower abdomen, saw my surgeon, she ordered a double Ct-scan and said to see her the next day. My surgeon called the same day immediately following the Ct-scan cuz the radiologist was alarmed by what he saw.
To everyone's surprise they found 3 things wrong not relating to my original pain.
1. I now have double partial collapsed lungs instead of one.
2. I have a significant amount of air trapped in my stomach causing it to expand.
3. I now have a compression fracture of my L4
Apparently it is not a good thing to have an air filled stomach for any length of time - mine according to past tests has been noted for 5 months. I had an X-ray 1 week after the Ct-scan to see if the air has moved - it did not - so on Monday the 24th I will be having a EGD or scope of the stomach to see what is causing this problem.
Had my EGD and results are that I have Gastroparesis to better understand this condition please click on gastroparesis
There isn't anything they can do for my lungs because of my Bronchiectasis except see the pulmonary specialist in Sept. It just makes it harder to breathe as the space is more compromised.
As for my L4 - can't get into the Neurosurgeon until July 8th so I will wait until then. I will try to update after I know more.
June 22, 2014
March 01, 2014
More problems with my Ileostomy
On Feb. 11th my ileostomy decided to prolapse - it telescoped down into my bag about 6", had to go to the ER for them to push it back in. It happened again on the 15th this time it prolapsed 10", I had to go to the ER so they could push it back into the stoma had to stay in the hospital both times to be watched. I was told to make sure I see my doctor on the 20th.
My doctor scheduled surgery for the next day - emergency surgery was 2/21/14.
This surgery was probably the hardest one on me in a long time.
Thanks to my Hypo-motility issues Lilly (is my ileostomy's name) can not tolerate any narcotics which causes my intestines to completely shut down, so I can only use Tylenol, ibuprofen and now Tramadol. I have to toggle between these 3 meds every 4hrs just to stay at a 4 level. It is really the pits when you can't have stronger meds to take the pain away.
Surgery Type - my doctor went in via laparoscopy very small incisions to look around and found that there was too much play with my intestines. Her only choice was to open me up - I do have a small 2" incision, a couple of small ones and the open one is only 7" long, I heard of others having a much longer incision.
You're probably wondering why the open incision? - The reason in my case is because with all my many stomach surgeries I have had done were via laparoscopy so I have very little scar tissue and/or adhesion's to hold my intestines from moving, so by doing an open incision besides tacking up the intestines I'll also get some natural scaring which can also have a negative effect - too much scar tissue can also cause obstructions, one just can't win.
I am on a full liquid diet for 7 to 10 more days, then I will go on a low residue diet again - which is not diabetic friendly - To keep things moving along, I am drinking like there is no tomorrow and taking Reglan and Miralax to aide in my stool clearance.
Lilly's open mouth or as we refer to it as the opening of the stoma has shifted since surgery and it is NOT in a good spot - due to all the swelling I got from this surgery on the left side of Lilly, her opening in now sitting flush with my skin at the very lower right edge of my wafer. The left side Lilly is standing out about 1 + 1/2" so to better explain this it is like a teeter totter. Left side way up, opening way down. So I am asking for prayers that in it's shrinking it levels out.
You might be wondering why didn't the doctor put the hole in the middle? She did but 2 days later with the increased swelling in my stomach and stoma, Lilly shifted. Trust me my doctor was shocked when she saw me on Monday. I do have a problem with this situation - if Lilly doesn't correct herself while I am healing my doctor informed me I will be facing another revision once I am healed. I need to catch a break this surgery business is the pits. I have had 4 surgeries for my permanent ileostomy in 7 months.
Thanks everyone for all you're love, support and continued prayers I would not be getting through all this without you. Truly I can feel the love that all of you send my way, I feel so blessed.
Sorry so long I tried to explain the surgery the best way I could. Debbie
My doctor scheduled surgery for the next day - emergency surgery was 2/21/14.
This surgery was probably the hardest one on me in a long time.
Thanks to my Hypo-motility issues Lilly (is my ileostomy's name) can not tolerate any narcotics which causes my intestines to completely shut down, so I can only use Tylenol, ibuprofen and now Tramadol. I have to toggle between these 3 meds every 4hrs just to stay at a 4 level. It is really the pits when you can't have stronger meds to take the pain away.
Surgery Type - my doctor went in via laparoscopy very small incisions to look around and found that there was too much play with my intestines. Her only choice was to open me up - I do have a small 2" incision, a couple of small ones and the open one is only 7" long, I heard of others having a much longer incision.
You're probably wondering why the open incision? - The reason in my case is because with all my many stomach surgeries I have had done were via laparoscopy so I have very little scar tissue and/or adhesion's to hold my intestines from moving, so by doing an open incision besides tacking up the intestines I'll also get some natural scaring which can also have a negative effect - too much scar tissue can also cause obstructions, one just can't win.
I am on a full liquid diet for 7 to 10 more days, then I will go on a low residue diet again - which is not diabetic friendly - To keep things moving along, I am drinking like there is no tomorrow and taking Reglan and Miralax to aide in my stool clearance.
Lilly's open mouth or as we refer to it as the opening of the stoma has shifted since surgery and it is NOT in a good spot - due to all the swelling I got from this surgery on the left side of Lilly, her opening in now sitting flush with my skin at the very lower right edge of my wafer. The left side Lilly is standing out about 1 + 1/2" so to better explain this it is like a teeter totter. Left side way up, opening way down. So I am asking for prayers that in it's shrinking it levels out.
You might be wondering why didn't the doctor put the hole in the middle? She did but 2 days later with the increased swelling in my stomach and stoma, Lilly shifted. Trust me my doctor was shocked when she saw me on Monday. I do have a problem with this situation - if Lilly doesn't correct herself while I am healing my doctor informed me I will be facing another revision once I am healed. I need to catch a break this surgery business is the pits. I have had 4 surgeries for my permanent ileostomy in 7 months.
Thanks everyone for all you're love, support and continued prayers I would not be getting through all this without you. Truly I can feel the love that all of you send my way, I feel so blessed.
Sorry so long I tried to explain the surgery the best way I could. Debbie
January 17, 2014
Jan. 3rd learned I needed another surgery
My surgery was scheduled for Jan. 8th for a parastomal hernia repair with mesh as well as a ileostomy stoma revision. I was only in the hospital 5 days a first for me in a long time.
I am doing as good as I can considering just having surgery. Instead of saying "grandma got ran over by a reindeer" I can say this grandma got run over by a Mack Truck. At least that is what it feels like. I have 4 or 5 small 2" incisions all over the place plus the holes from the drain and from the central line (both of which I have to watch because they are still draining).
I will just say a few things - I do know how strong pain killers will mess up ones intestines, mine even more so because of my extremely hypo-motility dysfunction so the 3 doctors looking after me didn't want to give me anything more the Tylenol IV, Toradol IV (IBP) and Valium.
So when my pain would not go down after pulling my IV meds, I asked something stronger that Lilly (ileostomy stoma) could handle, they gave NUCYNTA 50mg, I will only be on them for 4 more days if needed. Within an hour my pain went from a 7 to a 5 and I could for the first time in a month sleep on my right side (surgery side). I am to take it every 4hrs to keep the pain to less than a 4.
There is very little side effects Thank God, it controls my pain and Lilly still goes non stop. I am not even taking Miralax, matter of fact she now goes about 15 times during the day and only once at night. Verses always at night.
The REALLY good news about this surgery was EVERYTHING was normal. I have been dubbed abby normal by my doctors and my dear friend Marilyn. This surgery was a true act of God and from all of your prayers and support. I was in good hands.
Surgery was just over 3 hrs, got sick in recovery (not up stairs), no extra IV pokes (got a central line upon arrival), could eat/drink liquids within 24 hrs (that's a first for me), Full liquids 24 hrs later, solid low residue foods 3rd and 4th day. And I saved the best for last I am home 5 days after surgery (past 15 surgeries my shortest stay was 8 days longest was 35 days. So I do feel truly blessed.
I do not have to go see Marlene (the stoma nurse) there was talk I'd have to go every 3 days, but she called 3 companies to supply me more new products and she gave me enough supplies for 2 weeks. I will have some troubles seeing the bottom of my stoma, but I have a mirror that rotates so that should help me to put my paste on.
It will take some getting use to as she Lilly has tripled in size - she's 1-1/2" tall by 2" at the top and the stem 1-5/8" other than the color she looks like a mushroom. Verses 3/4" and underneath my skin at surgery.
My doctor said my surgery was in deed necessary as some hernias do not always have to be fixed. Thanks to all of you for your love and support I could not have gone through this without your friendships. Talk to you soon Debbie
I am doing as good as I can considering just having surgery. Instead of saying "grandma got ran over by a reindeer" I can say this grandma got run over by a Mack Truck. At least that is what it feels like. I have 4 or 5 small 2" incisions all over the place plus the holes from the drain and from the central line (both of which I have to watch because they are still draining).
I will just say a few things - I do know how strong pain killers will mess up ones intestines, mine even more so because of my extremely hypo-motility dysfunction so the 3 doctors looking after me didn't want to give me anything more the Tylenol IV, Toradol IV (IBP) and Valium.
So when my pain would not go down after pulling my IV meds, I asked something stronger that Lilly (ileostomy stoma) could handle, they gave NUCYNTA 50mg, I will only be on them for 4 more days if needed. Within an hour my pain went from a 7 to a 5 and I could for the first time in a month sleep on my right side (surgery side). I am to take it every 4hrs to keep the pain to less than a 4.
There is very little side effects Thank God, it controls my pain and Lilly still goes non stop. I am not even taking Miralax, matter of fact she now goes about 15 times during the day and only once at night. Verses always at night.
The REALLY good news about this surgery was EVERYTHING was normal. I have been dubbed abby normal by my doctors and my dear friend Marilyn. This surgery was a true act of God and from all of your prayers and support. I was in good hands.
Surgery was just over 3 hrs, got sick in recovery (not up stairs), no extra IV pokes (got a central line upon arrival), could eat/drink liquids within 24 hrs (that's a first for me), Full liquids 24 hrs later, solid low residue foods 3rd and 4th day. And I saved the best for last I am home 5 days after surgery (past 15 surgeries my shortest stay was 8 days longest was 35 days. So I do feel truly blessed.
I do not have to go see Marlene (the stoma nurse) there was talk I'd have to go every 3 days, but she called 3 companies to supply me more new products and she gave me enough supplies for 2 weeks. I will have some troubles seeing the bottom of my stoma, but I have a mirror that rotates so that should help me to put my paste on.
It will take some getting use to as she Lilly has tripled in size - she's 1-1/2" tall by 2" at the top and the stem 1-5/8" other than the color she looks like a mushroom. Verses 3/4" and underneath my skin at surgery.
My doctor said my surgery was in deed necessary as some hernias do not always have to be fixed. Thanks to all of you for your love and support I could not have gone through this without your friendships. Talk to you soon Debbie
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