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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Is there any hope for my Mom? (long story)



09-30-2016, 12:09 AM   #1
Weems2k
 
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Is there any hope for my Mom? (long story)

Oh boy, where to start. I guess from the beginning all the way back to last December. My mom finds out she has breast cancer. It was caught early, and tumor was very small. The plan of action was surgery first. Because the doctors said the cancer started from some rouge cell in her body, as a preventive measure, she would then do 4 rounds of Chemo, along with radiation after. After that, there would be a less than 1% chance of cancer coming back. Her first Chemo was in late February of this year. And that's when the crap hit the fan.


While the Doctors still can't determine the true cause, they do know that it was that 1st chemo that triggered it. Apparently the chemo sent her white count down to a critical level. That caused part of her colon to be weakened, and cause C-Diff bacteria to grow. She was rushed to the hospital one night with extreme abdominal pain, but no perforation. Doctors gave her antibiotics, and a week stay in the hospital. They still wanted to continue the chemo plan the next month even with all this. Until a week later. My dad rushed my mom to the ER again. This time her colon did rupture, and rupture big. The C-Diff caused almost a 2 inch hole in her large intestine. She had emergency surgery, was placed in the ICU, and was on a breathing tube for 2 days.


I thought I was going to lose my mom that night. Perhaps cause the grace of God, she made it. The surgeon had to do a temporary colostomy to allow her colon to heal. She estimated that in about 2 months, she could have it reversed. Well, it was a rough few weeks. A 2 week stay in the hospital, a lot of pain, stress, ect. The month of March was the worst of my life. Not only that, but only a few days after being out of the hospital, she had to go back in again cause blood clots were forming in her lungs. F..me!!! Luckily they were all very small, but she now had to go on Xeralto for 6 months.


April, things kinda settled a bit. My mom hated that colostomy bag, but knowing it was temporary, was getting used to it. In early May, her CT scan showed that everything was healing great, and that she could schedule her reversal, which she did for the end of the month. Then more bad stuff came about. A few days before her surgery, she started feeling sick, and had a pain in her lower back. The doctors said it was just a muscle ache. Wrong. During her reversal surgery, the surgeon found it was a huge abscess in which if it had ruptured, she would have died. Twice now a near death possibility. Thankfully, the surgery went well, and they cleaned out the abscess as best as they could. She also had a drain tube put in too.


Middle of June now. The wound where her Stoma used to be wasn't healing so well, and was leaking stuff. She also was getting a high fever, so my dad had to yet again rush her to the ER. This wasn't a great week to begin with cause my uncle died at this time too. Apparently there were more abscesses they found, and another week stay in the hospital. Flash forward to 4th of July, and again another ER trip. At this point we were all stressed out. It didn't seem like the doctors knew why these abscesses kept coming back. At this point they thought there could be a leak somewhere in her intestine. CT scans were mostly clean, so they did a fistulagram. It showed a small pinhole leak, and fistula in her small intestine which was feeding all these abscesses. They put another drain tube leading right to the fistula I believe, and be on IV Antibiotics for 10 days.


Thought we turned a corner here. She was doing much better, getting her strength back, and healing up nicely. In the middle of August, they removed one of the tubes since it was hardly draining anything anymore. That's when trouble started again. A few days later more fever/chills. Another ER trip. Doctors were starting to run out of options. They decided to put her on a TPN diet. With complete bowel rest, they thought the fistula would heal, and hopefully close up. She didn't handle the TPN too well at first, but soon adjusted to it. Labor Day weekend comes, and her CT Scan, and fistula gram showed that it closed up!! She was feeling fine, and just had the one drain tube in her which didn't have too much anymore. After almost 9 months, all the prayers seemed to have been finally answered. Still a long way to go though. She was still on the TPN, but could start eating small stuff. Things looked good.


Till about a week ago now. Another ER trip (I believe it's been 8 total so far this year). My mom again is feeling ill, and we get news that her fistula has opened back up. We're all devastated. CT didn't show any abscess, but who knows. The doctors said they are all out of options, and have done everything they could. Because of her previous operations, they don't want to do any surgery unless necessary. We are pretty much at square one again. She's still on the TPN with no food again. I guess on a plus note, she's off the Xeralto which was wreaking havoc on her joints, and muscles.


So that's where we are now. No one seems to know anything now. Being in the Midwest, my dad has been in contact with a hospital in Milwaukee that's suppose to have a team of doctors that specialize in fistulas, and the Mayo Clinic which is about 5hrs away. Too add even further stress, the good health coverage they were able to keep after my dad's retirement is about to expire at the end of October. So now they have to go with that crappy Obummer Care which will cost them tons more.


I've been trying to stay strong, and keep things in focus, but it's so hard. Is there any hope at all? I know reading some of these other posts, there are those in much worse shape. Anyway, that's my story. Sorry if it was such a novel. Thank you for those that read the whole thing, and can give some good advice.
09-30-2016, 06:12 AM   #2
ronroush7
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Hi. I am sorry for all that your family has been through. You have come to a good place for support. I hope your mother gets some answers soon.
09-30-2016, 08:48 PM   #3
mom5272
 
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God bless your Mom.. Never give up. She can make it through this. Please keep us updated.
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09-30-2016, 08:49 PM   #4
ronroush7
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God bless your Mom.. Never give up. She can make it through this. Please keep us updated.
Amen

10-01-2016, 08:49 AM   #5
Weems2k
 
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Thanks for the support. Glad to know that she isn't the only one having to deal with these damn things. I have to admit though that my faith has been a bit shaken with this latest setback. I want to think that God has a plan, and will help heal her, but it does get tough at times. Just gotta stay strong, and take everything day by day.
11-22-2016, 11:41 AM   #6
Weems2k
 
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Thought I'd give a bit of an update. It's been pretty much up, and down these couple months. My Mom's still on TPN, and will continue to be for quite some time. Last night she had to get taken back into the ER again. They found an abscess near her stomach. So now she has 2 Drain Tubes. along with not being able to eat/drink anything. I guess on a positive note, she should be able to come home for Thanksgiving.

Times like this, it really creates a lot of doubt about God, and if he really does listen. I've been told he answers our prayers 1 of 3 ways. Yes, Not Yet, or I've got something better for you. Well, over 10 months now, and not one of those things have come about. I'm really trying to keep the faith, but times like these.........
11-22-2016, 12:31 PM   #7
ronroush7
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Thought I'd give a bit of an update. It's been pretty much up, and down these couple months. My Mom's still on TPN, and will continue to be for quite some time. Last night she had to get taken back into the ER again. They found an abscess near her stomach. So now she has 2 Drain Tubes. along with not being able to eat/drink anything. I guess on a positive note, she should be able to come home for Thanksgiving.

Times like this, it really creates a lot of doubt about God, and if he really does listen. I've been told he answers our prayers 1 of 3 ways. Yes, Not Yet, or I've got something better for you. Well, over 10 months now, and not one of those things have come about. I'm really trying to keep the faith, but times like these.........
Prayers

11-22-2016, 01:13 PM   #8
If*
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Hi, prayers and strength to you and yours.
Your mom is a fighter! Hang onto your faith, never loose hope. I know it is hard during difficulties. but please do hang on. God can bring so much comfort, can help us through the rough times. Think of all that your mom has come through, please try to focus on all the amazing miracles God provides that can look simple, but are truly miraculous.
I hope this post does not feel annoying, i do know the 'are you serious' feeling when it feels like you are being beaten against the rocks. That's when i have to stop myself, remember all that we have to be so very thankful for, i do mean all the little things too. Look for gratitude, try to replace worry, fear, with gratitude. Look at the blessing, that your mom is being treated, that this time is so precious ~ reach for gratitude.

May God watch over you, your mother, your family. May God give you strength, hope and touch your heart with the fullness of gratitude for all the good that is flowing even during difficult times.

My prayers to you and yours.
11-22-2016, 02:06 PM   #9
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Amen

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Crohn's Disease Forum » Surgery » Fistulas, Fissures and Abscesses » Is there any hope for my Mom? (long story)
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