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SqueakyandLiza
(@squeakyandliza)
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August 6, 2020 5:33 pm  

I thought 2018 was the worst year of my life, but honestly 2020 is giving 2018 a run for its money. 

I hit my 2 year stoma anniversary in June still with the wound from the surgery not healed. I had a series of appts mid July looking for a second opinion to what my surgeon said-that I needed my rectal stump removed. I’m still waiting for the official opinion from the new surgeon, but the email I got from the new GI implies that she is planning on surgery, just wanting to consult with someone else about whether my uterus needs to come out too. The GI said my small intestines look good, but scan and biopsies show inflammation in rectum. So I’m trying to mentally prepare myself for that surgery, along with hernia repair. 

In the meantime, I had to go yesterday to have a skin cancer removed. The surgeon left a hole bigger than a quarter on my cheek. Afterwards the PA sewed me up, so now I have over 30 stitches in my face and my left eye is swollen and I can barely open my mouth. It is so much worse than I was expecting. 

Those are the big things now, but also my dad dying, Covid, still being out of work (though my plan now is to wait until after the next surgery to find a new job), etc. 

I am so impressed with how well so many of you have been dealing with things that are so much worse than what I have going on. I try to be positive, and you guys help me with that.  

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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LLNorth
(@llholiday)
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Posts: 234
August 6, 2020 6:02 pm  

Dear Liza, It is so hard to have things up in the air waiting for appointments, consultations, opinions, decisions - and having all that during these difficult times, on top of losing your father and everything else, it is just so much. I hope your cheek heals quickly and you feel better with that, and that your surgery gets scheduled soon. Sometimes just one thing getting resolved, like a date set, can help.

My mother Used to say that when doing housework to start by making the bed, because it is not hard to do and looks “bigger” than it is - then a person would feel like one significant thing had been done, and feel more like doing the other things. I apply that concept to a lot of things, am sharing it with you in hope that it might help a little sometime.

Thinking of you,

LL

Colostomy 4/30/18
I love the smell of coffee in the morning. It smells like .... victory.


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SqueakyandLiza
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August 6, 2020 6:32 pm  

@llholiday

Thank you very much. That is a great tip for when things feel overwhelming!!  😊

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Lynne
(@lynne)
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Posts: 33
August 7, 2020 12:47 am  

Liza, I read your post a couple times yesterday and now a couple times today.  You don't have a question and sometimes it's hard to know what to say that might be helpful or would cheer you up.  Since I couldn't come up with anything, I didn't say anything, but then I thought that I would just let you know that I'm thinking about you and sending you all my best.  You have had a string of really lousy things happen.  I think you are due for some goodness to come your way soon! :-)


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SqueakyandLiza
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August 7, 2020 1:38 am  

Thanks Lynne!!  I appreciate your response. 😊

If I was going to ask a question, I guess I would ask if it is normal to feel so alone, in spite of having people who care for you?  Covid is very isolating, but these health issues make me feel the same way. Even though my husband has been through all of this with me, there are just some things that he doesn’t understand. He did try to make me laugh today, telling me I looked like the Phantom of the Opera because the left side of my face is all bandaged up. 😂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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ChrisandBagpus
(@chrisandbagpus)
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Posts: 128
August 7, 2020 6:21 am  

Liza

For certain if you have a unhealed wound and as a result of that ongoing inflammation then its hard for the body to  recuperate, heal and repair.

Remember for all the great medicine out there its still our body that performs the miracle of repairing the damage from the surgery, the drugs and any other treatments. 

Inflammation in itself even affects our mental and neurological functions even without Covid.

Repairing the damage take a lot of energy and nutrients so a good wholesome diet with some exercise and good fresh air are key to the recovery not forgetting some fun and laughter (proven).

The surgery might help with the inflammation but you must weight it up verses the extra trauma to your good self, I can only question why you think the extra useful bits should be removed. Example we now better understand the function of the appendix it is now no longer considered  redundant. Just me thinking aloud.

 

We know Covid is an infection. However Positivity can be infection please catch the latter insist your friends give you the latter :-) 

Colostomy Jan 2020


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john68
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August 7, 2020 8:11 am  

Hi Liza, it’s easy to say things will work out but when you are in the midst of problems it’s hard to see an end. Talking and sharing is important and you have some great advice above. 

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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August 7, 2020 2:26 pm  

@chrisandbagpus

Thanks Chris!!

I would love nothing more than to avoid the rectal stump removal. That is why I went for the second opinion in the first place. My surgeon here is convinced that is why the wound isn’t healing. There is a fistula that goes from the rectal stump to my wound, so there in a constant source of infection in my wound. When I went for my second opinion, they did their own CT scan to confirm that the fistula is there and then give their opinion if surgery is necessary. That is what I am officially waiting to hear. Unfortunately I’m losing hope that I can avoid the surgery. 🙁

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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VeganOstomy
(@veganostomy)
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Posts: 2978
August 7, 2020 5:40 pm  

@squeakyandliza You really have been through a lot, so be gentle on yourself. 2020 has been a disaster for so many people, but it will eventually come to an end and I know that better days are ahead for you. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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SqueakyandLiza
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August 7, 2020 7:14 pm  

@veganostomy

Thanks Eric!!  I hope you are right. 😊

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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ChrisandBagpus
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August 8, 2020 5:24 am  

Liza

I reread my post I can see I may have confused it a bit.

Yes it might be the right thing to have the surgery to solve the inflammation you will have to weigh that against the additional trauma that any surgery will cause.

Between now and the finial decision you you could make your diet more alkaline and reduce consumption of red meat and alcohol. I have know of cases where this action has resolved inflammation and help persistent wounds heal, If you can tolerate the above you will have an idea within 3 weeks if its starting to help and I can't see any major harm in trying other that how your digestion and ileostomy works -Eric for example by being Vegan will have a very alkaline diet so its not impossible.

Ahh the other matter I was thinking of the ladies parts when I mentioned the extra useful bits - you know how we guys can be shy on that subject. Having those parts removed will effect your female hormone balance ( at any age ) - do you really need to subject yourself to the extra stress of that also? I have come across ladies in their 80's suffering really bad menopause symptom from hysterectomy 40 plus years earlier!! Hard to believe. I know you've been through a lot, sorry we can't make the decision for you but knowledge is powerful and deep down I'm sure at the time you will know what is right if you can trust yourself.

Chris

Colostomy Jan 2020


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SqueakyandLiza
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August 8, 2020 6:30 am  

@chrisandbagpus

Thanks Chris! You have some great points. 

When I had my last CT scan in November, a copy went to my primary dr and she saw something that concerned her so she sent me for an MRI and referred me to a GYN. When he looked at the scan, he said my uterus was enlarged and had several fibroids. He said it wasn’t necessary to remove it now, but it would be much more difficult to remove later after rectal stump removal/hernia repair. And since I wasn’t using it anyway, I should just have it taken out at the same time. My second opinion surgeon didn’t necessarily agree, so she was going to consult with someone else to see what they thought. 

A year ago, I would not have been the slightest bit concerned about any kind of cancer risk by leaving it in, because there was NO cancer anywhere in either side of my family. Now I have a dead dad and a face full of stitches that say otherwise. 😕

Honestly if my stupid wound would have just healed, none of this would even be a question right now. I could deal with the rest. Even the hernia, which can be painful at times. But the quality of life with an open wound with as much drainage as it has, where the dressing needs changed every 12-24 hours, just isn’t something I want for the rest of my life. I had hoped the second opinion would produce a non-surgical option, but that isn’t looking likely. 

Another thing I wonder about...  I have been using Humira for a year and a half, and one of the warnings is that you are more susceptible to cancer and other diseases. Makes me wonder about the appearance of the skin cancer now??  I generally avoid spending much time in the sun, and use sunscreen when I will be out in it.  I wonder if anyone else taking a biologic has noticed anything that may be a result of the lowered immune system???

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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