A PMP survivor!!

I have been asked to tell my story so this blog is being developed to give hope to those who are newly diagnosed with Pseudomyxoma Peritonei ...... please scroll down to read my journey with PMP. I will - as this blog develops - also share some information about my multiple health conditions & the daily challenges faced when dealing with them - mostly autoimmune in nature. I share this information hoping that it may help others in similar situations in some small way.

Sunday, April 26, 2009

A follow-up

Hi all,
The ultrasound of the liver lesion was fine (whew!!) ... a fluid filled cyst that they are not at all concerned about. They will just know to keep an eye on it with each coming scan.
However!
the week before my followup visit I had yet another "small bowel twisting episode" which normally resolves itself fairly quickly ... but .. this one didn't and I was still in pain when I went for the followup visit.
On examination he found a hernia & I am now recovering from an abdominal hernia repair ... I will add more detail in my blog ............
It has been just over a week and I have less pain now ... I see my surgeon for a post-op check on May 20th,
hugs, Kay

Tuesday, March 10, 2009

A quick update

Hi all,
I realized the other day when someone referred to my blog that I hadn't been on here for quite some time!
I have become quite addicted to Facebook of late and have been having so much fun connecting with lots of PMP pals from all over the world in a fun & chatty way!
I have just had my six month follow-up mammogram & ultrasound and the good news is that the lumps have not changed at all so I can leave it another 12 months now!!!
I have also had my follow-up ultrasound on the liver lesion that was mentioned in my last CT Scan ... I will see my surgeon to get the results on April 2nd ... I feel very confident that all will be OK with that too.
I am fast approaching my 8 year anniversary of my MOAS ... May 25th 2001 .... where did all that time go??
Anyway ... I will keep this one brief - if anyone reads this who is newly diagnosed don't forget to look at my links to other stories on the right column or I would be more than happy for you to contact me by leaving a comment & including your contact details ..... or find me on the PMPBB yahoo group (link at the side of page)
Take care all,
Hugs, Kay :)

Subscribe to: Posts (Atom)

Index of my story

1. My Journey with PMP – A Summary
2. Ulcerative Colitis (UC) - a debilitating, insidious disease!
3. Hysterectomy - links to UC??? Links to PMP??
4. An Acute Phase of UC - (PMP in disguise!!)
5. D-Day finally arrives!
6. Surprise!!! - An unexpected outcome from the surgery!
7. Pathology Results say Appendiceal Mucosa Cystadenoma presenting as Pseudomyxoma Peritonei - PMP!!
8. Recuperation - hospital & home
9. More surgeries

Other Health issues;
o Inflammatory Arthritis
o Cardiac issues
o Diabetes

My Journey with PMP - A Summary

This will be the section where you can read my story .....

I will begin writing it in another format and ... as time allows ... will add the completed story to this section..

That is the plan!

A Brief Summary;

My PMP was discovered during surgery to remove my colon & create a J Pouch (due to - what was thought to be - a severe flare up of Ulcerative Colitis) on May 25th 2001 and 10 days later I had Heated Intraperitoneal Chemotherapy surgery ... the first for my surgeon & in my state and only about the third in the country (Australia) at the time!!

My surgery was extensive and included a permanent ileostomy.

My scans have been "all clear" up to this stage!!!

My prior history included severe Ulcerative Colitis that was diagnosed and treated in 1993 but rarely went into remission. I had suffered from undiagnosed symptoms of this from the early 80s (in my early twenties) My specialist said that the severity of my disease was in the top 5% of the population. I unfortunately had an intolerance to many of the treatments and took large doses of cortisone most of the time to try to manage the condition.

For many years I suffered from extreme lower right quadrant abdominal pain that radiated down my right leg that was associated with my menstrual cycle & caused problems with my UC as well.... this, along with a severe drop in my hemoglobin count, lead to a hysterectomy in 1996

I had my gallbladder removed in 2003 due to extreme nightly pain/symptoms since my PMP surgery

From 2001 (since PMP surgery) I developed various symptoms;
extreme daily pain, muscle spasms, extreme lethargy to name a few
& was finally diagnosed with Seru Negative , Enterapathic, Inflammatory, Poly-arthritis in 2005

This is an auto-immune disease and is an extra-intestinal manifestation of Ulcerative Colitis ........ although the colon is removed the disease is "systemic" and now my body no longer has my colon to "attack" it has chosen to attack all my joints & muscles!!!!

......... one positive about feeling pain? I am alive to feel it & I count my blessings for that each and every day!!!

In early 2007 I had a severe reaction to my regular 1000mg cortisone pulses (always given in hospital as a day patient as a treatment for the arthritic flare ups). This reaction lead to a diagnosis of Ventricular Premature Complex (ectopic heart beats and tachycardia) for which I am receiving treatment

Recently (May 2008) I was diagnosed with type 2 diabetes for which I am very pleased to say I have managed to control well with diet only!!!

I will type out my full story with much more detail as soon as I have a chance in the hope that it will help those who are newly diagnosed with PMP to know there is hope ...... and also to give hope to others who suffer from chronic multiple health conditions!!

If sharing my journey can help even one person to cope better then I am very pleased indeed!

Ulcerative Colitis (UC) ..... a debilitating, insidious disease!

I will try to keep this section reasonably brief without leaving out the important information….. as you could imagine, I could ramble on for pages and pages because of the number of years I suffered from UC!

I was introduced to the symptoms of this disease at around 21 years of age .... pain in the form of abdominal spasms & cramping, bleeding from the bowel, urgency & multiple visits to the toilet which became much worse after eating spicy or fatty foods.
At this age I was reluctant to see a doctor about these problems due to embarrassment. When I finally did consult a doctor he suggested the problem may be caused by haemorrhoids and gave me some medication to try (after a basic check which I was NOT happy about).

I was to come back if it didn't improve but - once again - was too embarrassed to pursue it so looked for any "home" or over the counter remedies I could find!! Charcoal tablets became my best friend!! I also took notice of different foods that made my symptoms worse and cut down on them or cut them out completely. By doing this I managed the condition quite well without bothering to let anyone know what I was going through (young & silly!)

My husband and I had 2 children and when they were just starting school I decided to attend University to study for a Bachelor of Education.... I had always wanted to become a teacher and my husband encouraged me to follow my dream!

A year into my course I noticed my symptoms had become much worse. I was bleeding from the bowel quite severely on a daily basis and lost 14 kilograms in weight over the period of about 3 months.
I finally decided to ask my GP for a referral to a specialist who did some painful tests in his surgery and took biopsies. He told me that he thought I had a condition called Ulcerative Colitis and that it was in a very acute phase. The biopsy results confirmed this a few days later!

I had finally been given a diagnosis and now had a name for this "thing" that had been making my life a living hell!

Welcome to the world of prescription drugs and reactions to them!!!!!

This is when I was introduced to a prescription drug that would become a large part of my life for a very long time CORTISONE!! ...... in fact it is only just over a year ago that I have been able to say NO MORE!! A severe reaction early last year to a 1000mg IV pulse that I was having approx every second month for arthritis means no more cortisone for me ... thank goodness! (I will talk about that treatment in the section of my story about inflammatory arthritis – an extra-intestinal manifestation of UC)

Cortisone is an absolute miracle drug with often very severe and multiple side effects. I became very bloated and put on a huge amount of weight very quickly which was the most noticeable side effect of the drug .... of course there were many side effects that were not noticeable to others. Some of them being; swelling inside the mouth to the point where I would bite my cheeks when eating and talking, swelling inside my knees so they felt like sponges when trying to walk up and down steps, increased cholesterol, increased blood sugar levels, increased blood pressure, severe headaches, mood swings and I never felt like I needed to sleep..... my family and friends said they knew when I was taking it because my speech would be so fast they would have to ask me to slow down so they could keep up with the conversation!!! And my poor husband … he would only have to move in his sleep and I would say, “Oh good you’re awake!” I would hear him groan because he knew I would lay there talking to him all night … poor guy!!

Because of the high doses I had to take, and the fact that I was rarely able to completely stop taking it, my weight ballooned from a slender 53kgs to – at the time of my surgery - an enormous 86 kgs!! (very depressing!)

I also had severe reactions to most of the other medications I was prescribed to try to bring the disease into remission and to maintain the remission. One of the first drugs that they prescribe is Sulphasalazine (a sulphur medication). I had a very severe reaction to this ... called Steven’s Johnson Syndrome. I was then put on Dipentum which – at the highest dose - caused diarrhoea (which I sure didn't need ... UC is bad enough with up to 30 trips to the toilet per day when in the acute phase!!) I was then put on Mesasal. When the dosage was increased to the average of 6 tablets per day my liver enzymes increased to a dangerous level. I had to find a safe level which – for me – turned out to be only 2 tablets a day which did nothing to maintain the UC.
There were several other meds that were tried but all to no avail … I either had severe intolerances to them or they failed to give any relief.
The only relief I would get were high doses of cortisone …. It was a toss up which was worse .. the UC flare-ups (acute phases) or the side effects of the cortisone ….
During a severe flare-up it was “normal” for me to rush to the toilet up to 30 times between about 1 am and 8 am everyday … accompanied by severe cramping and bleeding!! …. So Mr Cortisone it was!!

One thing I do need to mention here is the importance of a second opinion if your gut instinct tells you that you are not happy with the treatment you are getting from your doctor!

The first specialist I went to told me it was all about the medication and he would just prescribe more drugs until he got it right! I kept asking about diet and he kept saying diet had nothing to do with it. All the years that I had managed this condition myself before diagnosis told me that this just was NOT TRUE!! I was having more and more reactions to the strong medications and he got very angry with me when I took myself off an immunosuppressant medication before I could get into see him … I was so very, very sick that I could hardly stand up, my face had swelled all down one side, I had severe nausea and severe headaches!! I thought that if I took it for the extra week that it would take to get into see him them I would be dead (that’s how sick I felt!)

That was the stage when I asked my GP to refer me to another specialist ( I had spoken to a friend who was a theatre sister .. O.R. nurse .. & she suggested another specialist for me) …. Best decision I ever made! He believed in a “marriage” of medication, diet, natural products and lifestyle! The food intolerance diet he put me on had the bleeding stopped within 2 weeks … I was amazed.
Unfortunately I was in the top 5% of the population in regards to severity of the disease and the remission rarely lasted very long.

I am also a bit of a perfectionist when it comes to expectations of myself … not a good personality type for a person with UC!!! For instance … throughout the whole of my studies for my degree I only got 3 credits … the rest of my subjects I earned Distinctions & High Distinctions (does that explain how hard I am on myself??).

I also studied initially part-time and then changed to full time, was in charge of a school-aged child-care centre, and we had 2 young children. My husband was wonderful and we shared the load with the housework, cooking, shopping & parenting BUT any mother will tell you that the children always want Mum’s attention when they can see Mum is busy doing something else … so most of my study was done into the wee small hours when all the rest of the family was in bed – little or sometimes no rest - also not good for one suffering from UC!!!

Looking back I just don’t know how I coped with all this and studied & worked while also being a devoted wife & mother! I do remember taking a big sigh around 8 am everyday, picking myself up by the bootstraps and getting the kids bathed, dressed, fed and off to school (hubby had already left for work at this stage each day) … whew! One foot in front of the other & sheer determination! …. My hubby & kids deserved nothing less!!!!

Hysterectomy ….. links to UC??? Links to PMP??

For many years I also suffered from severe lower right quadrant abdominal pain associated with my menstrual cycle … this pain would be so severe and would radiate down my right leg to the point where – at the worst times – walking would be difficult.
The UC would also be worse during the menstrual cycle and this was thought to be linked to hormonal problems …. The bowel would swell and be so very painful it was often painful to sit down…

I had tried several treatments under the guidance of a Gynaecologist to no avail.
At 38 years of age I received a phone call from that specialist to say that my haemoglobin count had gotten far too low and I had no choice but to have a hysterectomy.
We had our 2 beautiful children and decided that it would be best to follow the specialist’s advice so - in 1996 - I had a hysterectomy but fortunately retained my ovaries thereby avoiding an early menopause….

I now look back and wonder if those lower right quadrant pains were the rumblings of an angry appendix or indeed the rumblings of the beginning of PMP???

An Acute Phase of UC … (PMP in disguise!!)

This is actually the beginning of my PMP journey (although I didn’t know it at the time) so I will try to be more detailed in this part of the story.

In the very beginning of 2001 I became very sick with what was thought was a flare up of UC. Even to me it seemed like an acute phase of that insidious disease!!
I was doing the normal 30 plus trips to the toilet between the wee small hours and 8 or 9 am each day accompanied by severe bleeding. The one thing that was much worse was the amount of pain in the lower right quadrant of the abdomen - excruciating pain from which I could find little to no relief no matter what position I would lie in.

I made an emergency appointment to see my specialist. He put me on – you guessed it – a high dose of cortisone with the intention of “shocking” the UC into remission. After a week of pain and bleeding and uncontrollable symptoms I had CT Scan done. The radiologist also did an ultrasound that showed a cyst on my right ovary. They decided it may just be hormonal and they would re test in approx 6 weeks if the symptoms still persisted … other than that, all looked well.

A few days later I was hospitalised because of the severity of the flare-up … they were concerned about toxic megacolon. I was put on a drip of Hydrocortisone … 840mg per day for about 2 weeks.
I had several tests while in hospital … barium enema and follow through, CT scan, Colonoscopy ……
A colorectal surgeon was bought in to chat to me about surgery to remove the colon if it became necessary. He was wonderful and talked to me about J Pouches, brought print-outs of information in for me from the Internet and gave me sites to look at when I got home, arranged for a stomal nurse to talk to me and arranged for an person with a J pouch (& who had experienced a temporary ostomy) to come and visit me. Whew!

The bleeding eased off while having complete bed-rest and huge doses of cortisone…. I was discharged on 75mg of oral cortisone and asked to get plenty of rest and see my specialist in a few days.

Things went from bad to worse and I was becoming weaker by the day. I was visiting my specialists about 3 times per week. My Gastroenterologist called in colleagues to ask for help. They were going to put me into trials for a new type of treatment that was being tested but his colleague thought that I would get no benefit because I had not responded well to similar treatments.
I was having weekly injections of methotrexate in conjunction with 75mgs of cortisone per day and had gotten to the stage where I was only able to tolerate a bit of steamed fish and a bit of steamed pumpkin. (this soon progressed to being unable to tolerate solid food at all) I was vomiting after each injection, was nauseas all the time, extremely lethargic, dizzy and bathed in perspiration all the time - I had to carry a wet face washer with me at all times to mop up the sweat from my face! In fact at this stage I was barely able to walk unaided from 1 room to the other!!!

I was put into hospital for yet another colonoscopy that showed that the appendix looked concave from the inside & the colon wasn’t looking as bad as he would have imagined it would be (???) … my GI doc said he had never seen an appendix like it before! He sent me to see my colorectal surgeon (the one who had visited me in hospital) and we chatted about taking the appendix out and chatted about removing the colon and creating a J Pouch & temporary ileostomy. He said he wouldn’t take the appendix out while I was considering having the colon removed … “no sense in 2 surgeries” were his words!!

The surgery was left up to me … he had gone through all the pros and cons with me and I wanted more time to think about it ….. not minor surgery! Unfortunately I was becoming so sick that I felt I couldn’t continue like it for any longer so I made the decision to have the colon removed.

I now had to wean off the cortisone before he would do the surgery because of the risk of excessive bleeding and added risk of infection after surgery … cortisone also causes slower healing!
He said he would only operate once I had the dosage down to 5mg. (a slow process through necessity)

Unfortunate a couple of weeks prior to my scheduled surgery I became quite ill with a chest infection. It seemed to clear up but on my way to the hospital I had to visit the anaesthetist in his rooms to be checked over. He sent me home!!!!!!! The risk of pneumonia after surgery is already high without the added complication of congested lungs prior to surgery.

This meant a postponement of about a month because my surgeon was going away on a conference and I had to wait until he returned (or be cared for by one of his colleagues in the post op phase) … I decided to wait.

D-Day finally arrives!

Wow … the time finally arrives and I am wondering if I am doing the right thing …. Seems so drastic!! I have done lots of research regarding the J Pouch and - besides - common sense tells me that I cannot go on this way. I have been sick since the beginning of the year and it is now May 25th!! I haven’t been able to work all year and can hardly walk from one room to the other ….. no quality of life at all!

Typing this up brings back so many memories! The staff at the hospital are just wonderful … they all seem to find the time to chat to me and try to put me at my ease. I was in overnight to do the bowel prep in readiness for the surgery the following afternoon.

The next morning Jenny, the stomal therapist (nurse), comes to visit and spends a lot of time “siting” the temporary stoma … she said that it is best to have texta marks on the body where the stoma needs to be and a couple of choices too (clearly marked 1 & 2) ….. She took a lot of care working out where my clothes sit at the waist-line and how easy it would be for me to see what I was doing when dealing with the appliance.

After that the nurses took me up to the High Dependency Unit where I would be after surgery … they introduced me to the staff up there and showed me around explaining what each area was for.

By the time I came back it was time for the pre-med and time to kiss my hubby & kids goodbye … Wayne was able to walk down next to me to the outside doors of the operating theatre (Operating Room). ….. lights, camera, action! My next door neighbour is a theatre nurse at that hospital and she came up to me, said everything was going to be fine and told everyone to take extra good care of me! That was nice! My surgeon came up to me and told me he would take very good care of me too … once again very nice! … time for a nice sleep!!! Arrrrhhh!

Surprise!!! …. An unexpected outcome from the surgery!

When I woke up after surgery I was wearing what I called a “Michellen Man Suit” …. Huge blow up devices on my legs that pumped up and down to keep the circulation moving in my legs to avoid blood clots. I was also paralysed from the mid chest down due to an epidural that was put in place after I was given a general anaesthetic … this was so less general anaesthetic could be used … better due to the expected length of surgery.

The high dependency nurses were so wonderful … it was the middle of the night when I was brought up to High Dependency ward …. I had been chatting to the nurses in recovery … amazing since I have rarely remembered recovery on other occasions.
One of the nurses was particularly attentive and gave me a lovely hot wash and made sure I was feeling comfortable …. Obviously they had to turn me regularly through the night which was a “tad” uncomfortable (to say the least) but they did their job with the utmost of care & respect!

The next morning I rang my husband bright and early (I was feeling quite chirpy actually) and he seemed very “guarded” and I know him too well ..”what are you hiding from me?” Nothing – I just want your surgeon’s pager number” … Alarm bells were ringing quite loudly!! My surgeon arrived a few minutes after that phone call and told me the news.

When he “got in there” my abdomen was a mess and he had to do a completely different surgery than expected ….. about and 8 plus hour surgery instead of the expected 3! He told me that he had to take everything that the mucous had touched and that included the right ovary, the colon (as planned) about a metre of the small bowel, the rear lining of the abdominal wall, the anus and the rectum ….. all I could think to ask was “Does that mean that the bag is permanent?” He was a bit shocked at the question and said “uh yes” …. I think all the drugs were making me a bit feeble minded!!! He went on to say that it would take a couple of days to get the pathology results back so he would know what we were dealing with. ….. at that stage he had not used the word cancer and I hadn’t let the prospect of it sink in. Before he left he said he would use my phone to phone my husband because he had paged him – he asked if I knew what he wanted? I said that I could guess … he would probably ask him not to tell me anything because he believes in being an ostich!

The nurses were encouraging me to cry and all I could think of was how lucky I was that they had found it!

What I didn’t know until miuch later was that my hubby had received a phone call immediately after surgery from my surgeon (prior to him finishing his surgical “list”) and he had told him it didn’t look good and basically to expect the worst! Needless to say my hubby had dropped his bundle and was very distraught! Both of our families lived over 500 kilometres (300 miles) away .. he had called them & they had called some of our close friends to be with him until they could get down here to offer support.

Pathology Results say Appendiceal Mucosa Cystadenoma presenting as Pseudomyxoma Peritonei - PMP!!

The pathology results are in and it is appendiceal mucosa cystadenoma presenting as psuedomyxoma peritonei – I also had peritonitis because he estimated that the tumour had been burst for 5 or 6 months prior to my surgery!.
My surgeon chats to me & hubby about a 7 day window of opportunity for a new type of surgery called the “Sugarbaker Technique” …. Pioneered by Dr Sugarbaker in Washington. There had only been 2 surgeries in our country before in a public hospital in Sydney. So this would be a first for my surgeon and in our state and only the third for the entire country!!!
He wanted to know if I would consider it and I said absolutely! I jumped at the chance of being here for my hubby and the teenaged kids and hopefully to be around to enjoy grandkids one day!!

While it was being organised I was learning to deal with “Harriett” my new stoma and recuperating from the first surgery …
The number of staples from my sternum to my pubic bone was impressive! After the first few days I was moved into a private room in High Dependency away from the beds next to the nurses station.

I had a NG tube in because it takes a while for the bowel to “wake up” after surgery of this type. I had a drip in to keep up the fluids and the epidural stayed in place for a few days so that dealt with the pain relief. Once there appeared to be gas passing into the bag the NG tube was removed and the epidural was removed and I was given oral pain relief . And arrrrrhhhhhh those ice chips tasted like heaven! Unfortunately my small bowel was playing tricks on everyone and it still wasn’t working … the painkillers & the icechips & liquids they were feeding me were building up in my stomach until they all decided the only way they could get out was via a fountain called my mouth!!! OH how I hate vomiting … especially when my whole tummy is just stapled together … not nice at all! ……. Oops back to nil by mouth! ….

They put a subcutaneous line put in for morphine when it was needed because I could no longer take pain relief orally!
The countdown to this surgery was agonizing ….. they decided they were going to use a heart lung bypass machine because that was the only equipment they had that could heat the chemicals to the required 44 degrees Celsius and maintain that temp for one and a half hours while pushing it in and out of my abdomen continuously … not unlike dialysis…
The problem?
The machine was going to be in use everyday until Saturday … the 7 day window of opportunity was not looking good! Saturday would make it 10 days after the initial surgery … my surgeon contacted Dr Sugarbaker to discuss it with him and he gave the nod! So it was confirmed .. Saturday it would be!

The whole medical staff of the hospital seemed abuzz! It was obviously a very big thing for them … they had to take home paperwork explaining the procedure and study their role in the surgery … they were having meetings in little huddles on many occasions .. one thing I will say is that my surgeon went out of his way to talk to me, hubby and out kids about the surgery, how it would be done and the expected outcome … so they knew what to expect! That was so good of him.

I was getting very nervous as the day approached and was trying to be brave and not tell anyone how nervous I was! I finally admitted to the nursing staff and to the anaesthetist when he came to visit me prior to surgery. He wasn’t going to give me a pre-op until I told him I was VERY nervous!! He also decided that if his colleague could put an epidural in during surgery then he could too! Yayy .. the epidural was great for pain relief .. kept me very comfy!

I was sent up to ICU before surgery to have a central line put in … that was where all the medications and the TPN (liquid food/nutrients) would be put.

I remember waking up on the operating table at the end of the surgery but not being able to let them know I was awake … no pain and I somehow knew they were finished. They were having a conversation behind my head “she may still get a distended abdomen as part of the condition…” then I heard someone say “I think she’s awake!” … it was scary because I couldn’t move anything to let them know .. not even an eyelid!

When I woke up later … I was on a ventilator … being claustrophobic that was not a good experience! They were wonderful to me and kept talking to me ensuring me that they would remove it as soon as they could …. Don’t know how long it was in (I had been kept sedated most of the time) but it came out around 3 pm (My surgery was first thing in the morning) .. just before my hubby came to stand at the end of the bed … I was cytotoxic so it was double gown, double gloves and face mask for anyone entering the room … nobody who hadn’t finished their family was allowed to nurse me or come into the room … I told Wayne not to bring the kids in while I was in ICU because I wanted grandkids one day!!!

NO EPIDURAL!! It was later explained that they were unsure if it would interact badly with the heated chemicals! I had a line in for morphine in a “patient activated pump” … they kept telling me to “keep on top of the pain” by pressing the button at regular intervals … I remember being worried about becoming dependant on it so didn’t press it as often as I should have …. That meant that at times the pain “ganged up on me” and I need an injection “bolus” of morphine to get back on top of it!

I was in ICU for a couple of days before being transferred back to high dependency. The ICU staff were fabulous - I had 3 staff there all the time!
I was still considered cytotoxic for a few days but the precautions were not as strict after leaving ICU.

My surgeon told me he thinks the surgery had given me an 85% chance that the PMP wouldn’t return! I like those odds!!!
My stomal therapist (nurse) said she didn’t think they would have used the same incision for the heated chemo surgery as the initial surgery 10 days before. The oncologist came and sat on the edge of my bed a few days later and was very animated when talking about the surgery ..
Yes! They used the same incision and they used a colosseum effect … a large metal frame that held the abdomen open during surgery while they took it in turns using double gloved hands to “stir” the chemo and the contents of my abdomen around for 90 minutes!!! OK thanks for that info….

It took a long while for my small bowel to wake up again after this second surgery within 10 days .. it was really peeved!!! The TPN made sure my body was receiving the nutrients that it needed though.. blood tests everyday to work out exactly what was put into my daily “milkshake” as I called it.

I was up the day after my surgery once again and put into a chair … they encourage you to get up and walk as a soon as possible … helps with recovery & helps to prevent blood clots too. By gee it is a real feat to move around with all that stuff attached though!!!
The day I was ‘disconnected” I felt like cheering!

Once again I had a NG tube inserted because I told my surgeon prior to surgery that the one thing that I was really worried about was vomiting … I hate vomiting more than anything else .. he promised that he would make sure I didn’t vomit this time … he made sure I had maxolon in the drip (anti-nausea medication) and nade sure the NG tube stayed in until we were absolutely sure the ileostomy was working! …. Whew!
Just in case you are wondering; The nurses come In regularly to “aspirate” the NG tube … they use a large syringe and connect it to the tube to “suck” out any contents from the stomach …. Such as the bile that continues to be produced and the water from the ice chips …… did I tell you that ice chips taste like heaven??????
You see until the bowel wakes up, whatever is in the stomach builds up and the only way out is up!! So learn to love the NG tube!

What else can I remember ???? … mmmm

I will look up my old notes and continue with this later …… in the meantime I will publish what I have written so far …

More surgeries

The journey continues ....... surgery for wound infection .... gall bladder surgery...
I will give details in this section

Wound Infection & packing;
I had surgery for a wound infection at the pelvic floor approx 2 months after my initial surgeries. This required daily packing by home care nurses for 3 months as it had to heal from the inside out.

Gall Bladder Surgery 2003;

I had been getting severe pain which radiated from my upper back to the top of my stomach ... so severe it was causing extreme nausea and sometimes vomiting. This was happening every night and I would pace the floor and use heated pads and a massage pad ... getting very little sleep.
Initially I thought it may have been an after effect from the epidural used during the first surgery ... you hear horror stories about spinal injuries from them (people are always happy to share them)
I also thought it was part of the healing as I had been through so much!

On one of my routine scans it was discovered that the pancreas had a lump or swelling and I was then referred to a specialist who deals with the pancreas and gallbladder.

He did some more tests and thought that maybe the gallbladder have some "sludge" in it that was "backwashing" into the pancreas... he said the pancreas is a very sensitive organ and that may be causing the pain.

He booked me in for an ESRC to check the common bile duct and check out the situation. He had to cut the common bile duct because he said it was very narrow ... he thought that would allow the gallbladder to drain freely. He also said that there were gallstones present but they may pass.

The pain got worse after this ... I had the pain now 24 hours per day & not just at night!!! Arrrggghh

I revisited that specialist who said he didn't want to operate but if my surgeon was considering operating on a stricture which was found after a recent full obstruction then he thinks he should remove the gallbladder at the same time. He sent a letter to my colorectal surgeon stating that there were gallstones and what he had suggested.

My stricture had dilated of it's own accord and didn't require more surgery (whew!) so nothing was going to be done about the gallbladder ... meanwhile ... I was still in agony & taking regular pain meds to be able to continue to work!

One particular night I had the worst attack of pain ever to that point ... it was worse than labour pain and I never thought I would ever say that about anything! It was unrelenting and I could not find a comfortable position to offer ant relief from the unrelenting pain.

My hubby bundled me up in the wee small hours and took me to the Emergency Room where they were able to give me some morphine to relax the gut. At that stage all the internal "plumbing" had shut down and they were thinking they were dealing with another small bowel obstruction so they called my colorectal surgeon.

He came to see me and it was determined that it was a gallbladder attack & that it should be removed! I asked him if he would do it and he said "I wouldn't want me to operate if I were you!" because that was not his specialty and it may be able to be done keyhole.
The specialist I had previously seen didn't have "privileges" at that private hospital so My colorectal surgeon called another guy in.

That's were the fun began!

He didn't want to operate because I was under the care of another specialist who just happened to be a colleague of his!!! What?? I was lying here in agony and they wanted me to go home & make an appointment to see this other guy again??? ... My husband refused to take me home (he said he wasn't prepared to see me suffer anymore) ..
Long story shortened ..
This specialist told me he felt like the meat in the sandwich .. but he contacted the other guy who was currently on holidays and told him to go ahead & operate but he also told him that I didn't have gallstones!! (the case of the disappearing & reappearing gallstones!)

I was supposed to have keyhole surgery but they were unsure if they would be able to do it … as it turned out they decided to do an open surgery & they found 2 loops of small bowel wrapped around the gallbladder (mmm .. I wonder if that was causing the majority of the pain??) … he said that had he done it keyhole he would definitely have perforated the bowel and we would have been in big “trouble”. (someone was watching out for me once again!)

I was supposed to go into high dependency for 10 days but they didn’t have a bed so I was left in a general ward. The staff treated me as though I had had keyhole surgery … probably didn’t check the notes .. and I was gotten up and told to shower by myself the next morning (whew!) …

I had surgery on the Friday afternoon and was discharged on the Tuesday morning!!

My surgeon only gave me a 3 week certificate even though he told me it would be a 6 week recovery so I went back to work after 3 weeks 9the day before seeing him for a post op check) and he told me I would be able to return to work in another 3 weeks ….

Too Late!!! (I told him) …

Problem solved!!

Abdominal Hernia Repair 2009;

I have been experiencing episodes where the small bowel would twist on itself and then untwist again … very painful and I could actually feel it happening by placing my hand on my abdomen …. Not unlike a rope twisting on itself. This would often be followed by partial or full obstructions … mostly resolving themselves over the next few days to a week (if they were partial). This had been happening since my major surgeries in 2001. My surgeon has always thought it was being caused by the small bowel catching on scar tissue as nothing has ever shown up in my scans. I have had a lot of trouble each time I travel very far with these twisting episodes and obstructions so we have been reluctant to travel far from home.

My last scan had shown nodules in the abdomen and a liver lesion so I was visiting my surgeon with my 6 month check on the liver lesion on April 2^nd . The week before my follow-up visit I had yet another "small bowel twisting episode" which normally resolves itself fairly quickly ... but this one didn't and I was still in pain when I went for the follow-up visit.

This time he did a thorough examination (ouch) and found a small hernia where the largest drain for the heated chemo had been placed & he thought it needed repairing. We discussed my concerns regarding the use of mesh for hernia repair on PMP patients … I think he was interested to hear what I was saying .. and he said that he thought he would be able to repair this with sutures alone. I asked what would happen if I ignored it and he grinned and said “well it’s not going to go away if that’s what you are thinking” … he knows me well!! I then asked if it would stay the same & he said that it would get bigger and it would be a bigger job further down the track.

I was sent for an ultrasound of the abdominal wall as I have the same "catching & twisting" problem that happens on the other side under the stoma too & he wanted to be sure there wasn't a bigger repair job to be done.

I had the scan on the 8^th April and the sonographer blabbed (even though they are not supposed to say anything) saying that the muscles of the abdominal wall were intact. Mmmm??? I told her that my surgeon had pushed his finger into a hernia and she looked confused and said that maybe it only showed up when standing?? (when I thought about that he was only able to find the hernia when I was standing so that made sense)

I saw the doc with the ultrasound results on April 14^th and he re-examined me. He said he could definitely feel something and seeing the pain had not subsided that he thought he should operate … he said to be aware that he may not find anything but he could definitely feel “something” there and warranted at least an exploration. He booked me for surgery 2 days later on the 16^th. He said because nothing had shown in the ultrasound he would not touch the area near the stoma though & was not planning t go inside the actual abdominal cavity but would just work at the abdominal wall.

Parastomal hernias are very difficult to heal and sometimes can cause more problems often resulting in re-siting of the stoma …. So leave well enough alone is good advice in this case I think!!

When he saw me the morning after surgery he said that it wasn’t a straightforward hernia as he had expected. Instead of a small hole going straight through the abdominal wall it went downwards and then veered obliquely through the abdominal muscle .. he thinks it was following an old drain line. Although it was small in diameter it was long and he said he thinks the small bowel would definitely have been getting caught in there. (hopefully that will be solved now – at least on that side)

I have an approximately 6 inch (15 cm) incision and the hernia was able to be repaired with internal sutures … no mesh .. I am relieved about that.

I was originally going to stay overnight in hospital but needed to stay 2 days.

Before he discharged me he said absolutely no lifting or driving until he sees me next.

The wound was covered with a hydrocolloid dressing which made it waterproof. The stitches are all dissolvable and I was told to remove the dressing a week after leaving hospital. I changed the dressing yesterday (April 25^th) and as I suspected the stitches were stuck to the dressing and they came out as I removed the dressing (although – being dissolvable – they were probably ready to come out). I have covered it with hyperfix tape as it looked slightly infected (??) in one part and gaped a tiny bit in another.

I see my surgeon for a post-op visit on May 20^th & I will keep it covered until then …. I will check with my surgeon if there is any further sign of infection prior to that.

Other Health issues;

o Inflammatory Arthritis
o Cardiac issues
o Diabetes

In this section I will discuss other health issues that have developed after being diagnosed with PMP and how I cope with multiple chronic conditions and still enjoy my life!

Carpal Tunnel Syndrome coupled with Arthritis of the hands

18th September 2008 ...
I finally made the decision to have surgery on my right hand. I have carpal tunnel syndrome in both hands made worse by the inflammatory arthritis. I have put off surgery for several years now. Why? Because I have had so much surgery over the past 7 years that I was hesitant to have surgery unnecessarily.
The lack of feeling in both hands coupled with the pain of arthritis & diminished grip has been impacting more & more on my daily life - especially when dealing with the ileostomy.
I decided to have surgery on my right hand first & assess the outcome before deciding on "fixing" the other one.
It has been 5 weeks since surgery ... I had to have a synovectomy of the flexor tendons and ligaments as well as a carpal tunnel release (due to the arthritis).
I have an appointment with my specialist (surgeon) this coming Friday to discuss the surgery and to discuss what is recommended for the other hand.
So far I am very pleased with the result .. although there is still considerable swelling I have feeling back in all fingers of that hand!!! I haven't had feeling in the tips of my fingers for a very long time - I really notice the difference when comparing the 2 hands now. I am hoping there will be some improvement with the diminished grip as well ... I know it will not be a cure for the arthritis but I am happy to have sensation back!!

A PMP survivor!!

Sunday, April 26, 2009

A follow-up

Tuesday, March 10, 2009

A quick update

Pseudomyxoma Peritonei ...

Index of my story

About Me

Some Of My Favourite Sites

Blog Archive

My Journey with PMP - A Summary

Me in 2008 with my "grand-dog" Bailey

Ulcerative Colitis (UC) ..... a debilitating, insidious disease!

Hysterectomy ….. links to UC??? Links to PMP??

An Acute Phase of UC … (PMP in disguise!!)

D-Day finally arrives!

Surprise!!! …. An unexpected outcome from the surgery!

Pathology Results say Appendiceal Mucosa Cystadenoma presenting as Pseudomyxoma Peritonei - PMP!!

Recuperation - hospital & home

More surgeries

Other Health issues;

After 2 surgeries (MOAS) May & June 2001

My first day back at teaching beginning of 2002!!

Some Of My Favourite Photos

Shiraz

Keesha

Tigger

Rossi (front) & Bailey (back)

Lynda

A PMP survivor!!

Sunday, April 26, 2009

A follow-up

Tuesday, March 10, 2009

A quick update

Subscribe To

Pseudomyxoma Peritonei ...

Index of my story

About Me

Some Of My Favourite Sites

Blog Archive

My Journey with PMP - A Summary

Me in 2008 with my "grand-dog" Bailey

Ulcerative Colitis (UC) ..... a debilitating, insidious disease!

Hysterectomy ….. links to UC??? Links to PMP??

An Acute Phase of UC … (PMP in disguise!!)

D-Day finally arrives!

Surprise!!! …. An unexpected outcome from the surgery!

Pathology Results say Appendiceal Mucosa Cystadenoma presenting as Pseudomyxoma Peritonei - PMP!!

Recuperation - hospital & home

More surgeries

Other Health issues;

After 2 surgeries (MOAS) May & June 2001

My first day back at teaching beginning of 2002!!

Some Of My Favourite Photos

Shiraz

Keesha

Tigger

Rossi (front) & Bailey (back)

Lynda