A request for prayers and dust

[Arkteia]

Best of luck! All my prayers!

 

[manderz]

Yay! Glad to hear things are working properly Happy healing!!

 

[Sundial]

Gemgirl I just found this thread. I am so happy for you that your surgery went well and that you are on the mend after going through so much. My son has Crohn's disease and had the same procedure back in 2008. He has been doing great since then and I am sure you will too!

 

[Okie_girl]

Gemgirl, continuing to send positive, healing thoughts your way. So glad to hear you are at home, that's the best place to recover! Hope you feel a little better every day.

 

[AGBF]

Hi, gemgirl-

Just wanted you to know we're thinking of you and hope you'll continue to give us updates now that you are out of the hospital! Weather here in Connecticut has been hot and humid. Is it the same on the North Shore the way it is in the winter...or do you have cooler breezes there?

Prayers and dust for you continue.

Hugs,
Deb

 

[Tuckins1]

Gemgirl, hope all is well and you are continuing to heal!

 

[gemgirl]

Gemgirl I just found this thread. I am so happy for you that your surgery went well and that you are on the mend after going through so much. My son has Crohn's disease and had the same procedure back in 2008. He has been doing great since then and I am sure you will too!

Thanks so much Sundial. I am on the mend from both the surgery and from the C. Diff. I'm getting used to the new shorter length of my colon. It will take some time but on the overall, I'm OK! I just always have to know where the bathroom is. LOL! I've heard of folks with severe Crohn's losing parts or all of their colons. My Cardiologist's partner lost his entire colon to ulcerative colitis. How much did your son lose? I lost 75%. So the running joke is- now I have a semi-colon....... ba-da-dum........

 

[gemgirl]

Hi, gemgirl-

Just wanted you to know we're thinking of you and hope you'll continue to give us updates now that you are out of the hospital! Weather here in Connecticut has been hot and humid. Is it the same on the North Shore the way it is in the winter...or do you have cooler breezes there?

Prayers and dust for you continue.

Hugs,
Deb

I'm doing pretty well Deb. I just need a lot of rest to get my strength back, so I've fallen in love with the luxury of a daily afternoon nap. Colon surgery is said to be particularly debilitating. I have no idea of why but I'm going to ask my surgeon at my appointment on Friday.

Nope, no cool breezes here. We have pretty much the same weather as you do. We always have tons of humidity here on Long Island during July and August, but like you do, we have the blessing of miles and miles of shoreline. Here in my town, we have something like seven private beaches meant for town residents only and of course, after twenty years of living here we have our favorite one. I'm looking forward to taking some fruit salads and ice coffees down to the beach with my hubby at 3:30 one day and staying til 5:30/6:00 when the sun is golden and you might need a sweatshirt. That's my favorite time of day at the beach .

Thank you so much for the prayers and dust, and I wish your SIL great success in her battle with this dragon.

 

[somethingshiny]

So glad to read your update! Lots more dust for healing completely coming your way!

semi-colon....it is pretty funny....

 

[Sundial]

Gemgirl I just found this thread. I am so happy for you that your surgery went well and that you are on the mend after going through so much. My son has Crohn's disease and had the same procedure back in 2008. He has been doing great since then and I am sure you will too!

Thanks so much Sundial. I am on the mend from both the surgery and from the C. Diff. I'm getting used to the new shorter length of my colon. It will take some time but on the overall, I'm OK! I just always have to know where the bathroom is. LOL! I've heard of folks with severe Crohn's losing parts or all of their colons. My Cardiologist's partner lost his entire colon to ulcerative colitis. How much did your son lose? I lost 75%. So the running joke is- now I have a semi-colon....... ba-da-dum........

Gemgirl my son did not lose nearly as much of his colon as you did, but he had a perforation, infections, and other issues. Recovery was slow but steady. Be patient and keep your spirits up because things WILL get better and life can be normal again.

 

[risingsun]

Please do not overdue! Your body needs time to heal. If I find out that you are pushing things, I'm coming up there to sort you out Much love.... I nudge because I care

 

[gemgirl]

Please do not overdue! Your body needs time to heal. If I find out that you are pushing things, I'm coming up there to sort you out Much love.... I nudge because I care

I know honey, and I'm sort of counting on you to reign me in! because I came home and kind of jumped back into the house and the dogs etc. and it wiped me out right away. That's why I'm forcing myself to take a nap in the afternoon. I feel so much better when I get up. Today marks two weeks since my surgery and that's not very long at all, *especially* with this pesky C. Diff. I know, I have to slow it down....... So I guess I'll be forced to shop for gemmies........

 

[gemgirl]

Gemgirl I just found this thread. I am so happy for you that your surgery went well and that you are on the mend after going through so much. My son has Crohn's disease and had the same procedure back in 2008. He has been doing great since then and I am sure you will too!

Thanks so much Sundial. I am on the mend from both the surgery and from the C. Diff. I'm getting used to the new shorter length of my colon. It will take some time but on the overall, I'm OK! I just always have to know where the bathroom is. LOL! I've heard of folks with severe Crohn's losing parts or all of their colons. My Cardiologist's partner lost his entire colon to ulcerative colitis. How much did your son lose? I lost 75%. So the running joke is- now I have a semi-colon....... ba-da-dum........

Gemgirl my son did not lose nearly as much of his colon as you did, but he had a perforation, infections, and other issues. Recovery was slow but steady. Be patient and keep your spirits up because things WILL get better and life can be normal again.

I found out yesterday that when I *really* recognize what I've been through and that I don't have an organ that everyone else has, it gets me kind of .... I don't know, weird feeling. I've been so busy dealing with the surgeries and the after affects, that I haven't dealt with the "what they did" during those surgeries. But I'll be OK as soon as life does get back to normal and I see that we can live a normal life again. It's just been too many tests and doctors and hospitals for too long........ but I am going to be patient and stay positive. Thanks Sundial!

 

[MissGotRocks]

So glad things went well and you're right - you've been through quite an ordeal. I think it's always strange to think of things inside not being quite what they were but just keep focusing on the fact that they work! My MIL had a significant part of her colon removed due to cancer and while she had quick bathroom issues to begin with, even that subsided over time and at 82, she lives as normal a life as I do.

All good things take time but in the end you'll be fabulous again! I'm happy this ordeal is mostly behind you now!

 

[gemgirl]

So glad things went well and you're right - you've been through quite an ordeal. I think it's always strange to think of things inside not being quite what they were but just keep focusing on the fact that they work! My MIL had a significant part of her colon removed due to cancer and while she had quick bathroom issues to begin with, even that subsided over time and at 82, she lives as normal a life as I do.

All good things take time but in the end you'll be fabulous again! I'm happy this ordeal is mostly behind you now!

God bless your MIL MissGR, that's wonderful to hear. I wish her all the best with her continued recovery. I am grateful, very grateful that this ordeal is mostly behind me and we beat cancer before it took hold. I realize I'm very fortunate that I went for that first colonoscopy when I did or else I would have definitely been in your MIL's shoes. It's good. It's all good and life will be normal again.

 

[gemgirl]

I wanted to thank everyone again for all of the love and support. You are each very special people and I am grateful to have you in my cyber life!

 

[Dreamer_D]

Gemgirl I missed this thread when you first posted, and I am so sorry! I have a good excuse though, I was in labour that day

But I will send belated dust to you for your continues recovery! It is scary you got c. difficile while in the hospital. I know here in Canada they have been fighting very nasty outbreaks for a while. So glad you made it through that additional ordeal as well!

 

[zoebartlett]

Thinking of you, Gemgirl! How are you feeling?

 

[tyty333]

I just saw this thread...glad to hear you are doing well! Plenty of rest should help. Hope things are getting back
to "normal" for you soon.

tyty

 

[Aoife]

I'm so glad you're doing well, Gemgirl. You've been through so much mentally, emotionally and physically, it's not surprising that you are feeling a bit odd when you think about things. Take care of yourself!

 

[AGBF]

I'm doing pretty well Deb. I just need a lot of rest to get my strength back, so I've fallen in love with the luxury of a daily afternoon nap. Colon surgery is said to be particularly debilitating. I have no idea of why but I'm going to ask my surgeon at my appointment on Friday.

gemgirl-

Did you see the surgeon, and, if so, what did he say? I don't just mean about why colon surgery is debilitating, obviously, but about how he feels you are doing!!! Does he deal with your C.difficile or does he leave that to your gastroenterologist? At any rate, how are you today?

Prayers and dust continue!

Hugs,
Deb

 

[gemgirl]

I'm sorry I haven't gotten back to this thread. I've been dealing with another aspect of everything I've gone through. Something I never expected, but before I explain that, I'd like to respond to a few people.

Deb, I've seen my surgeon twice already since my ostomy reversal and he's pleased with my progress. I still have some complaints that I have to get passed (muscle spasms and cramping around the incision site, heavy duty gas pains that don't move or go away for half the day) but that will happen with time. I'm only five weeks post-op right now and that's not very long. My ostomy hole has completely healed over. I'm surprised that it healed so quickly, especially since they never stitch these big holes closed for fear of trapping E. Coli bacteria inside. That silly hole was just packed with a pretty remarkable healing medium and then bandaged over. The C. Diff is gone. Doctors commonly prescribe Vancomycin for either 7, 10 or 14 days. My surgeon prescribed it for 14 days (a little over kill was good in this case) and I took it for the entire prescription even though I was well (symptom wise) after a week. No one can have C. Diff without rampant diarrhea, so they accept that after the constant running to the loo is over, the patient is well, especially if there is no recurrance of symtoms after the antibiotic has stopped. I'm doing pretty well except for one thing......

I'm going to ask you guys to please keep me in your thoughts and prayers for a little while longer because I am having a hard time with something. I am losing all of my hair. While I didn't need to have any chemo treatments, my hair has been falling out for the past three weeks as if I were a chemo patient. (My Mom had eight rounds of chemo, so I know what that looks like). My surgeon has no explanation for it, although I informed him (that's scary) that wearing an ostomy appliance for some people causes extreme nutritional deficiences and hair loss. My Endocrinologist has ordered every blood test under the sun and I am seeing a Dermatologist on Monday, but none of this makes a person feel better when they've already lost 50 or 60% of their hair and it keeps falling out every time it's touched. I literally won't touch my head at this point. It's a terribly difficult and emotionally draining thing to go through, so please keep a positive thought for me. I just wish it would STOP falling out. Then I could deal with waiting for it to grow back.

Dreamer, I wanted to say congratulations to you and your hubby on the arrival of your beautiful new son Ryder. I saw a photo of him. He's really so gorgeous and I am so happy for you! Continued love, health and happiness to your entire family.

 

[Sundial]

Gemgirl I am so sorry to hear about this latest development! Hair loss is a difficult thing for women to deal with as our hair is so much a part of who we are as females. I hope this is just a temporary problem and I am glad you are seeking professional help although as you know they don't always have the answers. More prayers and dust coming your way.

 

[JewelFreak]

We'll miss you, GG, and look for you to be back in a week, much better and with all of the crap FINISHED. Sending dust & lots of prayers your way -- as well as thoughts of you & your 2- and 4-legged family!

--- Laurie

 

[Aoife]

Gemgirl, I'm happy to hear that you are healing, but very sorry to hear about the hair loss. I understand how deeply distressing it is on multiple levels, and am sending dust your way. I hope your doctors will be able to find an answer.

 

[gemgirl]

Gemgirl I am so sorry to hear about this latest development! Hair loss is a difficult thing for women to deal with as our hair is so much a part of who we are as females. I hope this is just a temporary problem and I am glad you are seeking professional help although as you know they don't always have the answers. More prayers and dust coming your way.

That's the truth Sundial. Doctors don't always have all the answers, especially in areas where little to no research has been done and that definitely includes hair loss. Most likely, from what I read and from what I've been told by friends who have experienced more minor hair loss- they're probably going to call this telogen effluvium caused by multiple surgeries, general anesthesia, and lots of medications. They don't have a treatment for TE. I'm most likely going to have to wear wigs and scarves until this thing works itself out, unless my home nurse is right and something glaring shows up on my blood work, but I really don't think so. I'd like to just sleep until all this is over with.

Thank you for the prayers and dust.

 

[gemgirl]

We'll miss you, GG, and look for you to be back in a week, much better and with all of the crap FINISHED. Sending dust & lots of prayers your way -- as well as thoughts of you & your 2- and 4-legged family!

--- Laurie

Thank you Laurie, from all five of us!

 

[jmtomaui]

Gem, I had to have a partial nephrectomy (kidney removal) last year and had the same issues with hair loss. Based on a recommendation I saw on a support site, I took Biotin (over the counter supplement) and used Nioxin hair system (shampoo, etc) that are both specifically formulated to promote hair growth.

I don't know if they were effective, or if enough time passed, but the hair did grow back and I at least felt like I was trying to do what I could to slow down the loss and make it grow...

Prayers for continued health and hair growth! Julie

 

[iheartscience]

Tons of dust to you...I hope the doctors can find out what's causing the hair loss and stop it, and I hope you feel better soon.

 

[gemgirl]

Gem, I had to have a partial nephrectomy (kidney removal) last year and had the same issues with hair loss. Based on a recommendation I saw on a support site, I took Biotin (over the counter supplement) and used Nioxin hair system (shampoo, etc) that are both specifically formulated to promote hair growth.

I don't know if they were effective, or if enough time passed, but the hair did grow back and I at least felt like I was trying to do what I could to slow down the loss and make it grow...

Prayers for continued health and hair growth! Julie

That's exactly the problem with this hair loss thing, the feeling of helplessness. Unfortunately for me, any time I touch my hair it falls out, and shampooing is almost a fate worse than death (for my hair). And I have two different shampoo regimes that promote the growth of new hair, but if I can't touch it........ I am taking Biotin though. Actually I was taking a few mgs. a day for years to combat the minor hair loss caused by menopause, but now I'm taking 25 mgs. a day. I'm also taking Saw Palmetto which is in every vitamin pill that supposedly promotes hair growth. I'll let you know if they do anything.