surgery #3

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Re: surgery #3

Postby Deleted User 5 » 21 Oct 2008, 20:08

And yet you still have the motivation to encourage Lars and others here. I know it must be hard. You have every right to be down, angry, frustrated and despairing, Juney. Anyone would be.
Yet somehow you have to dig down deep inside and find the courage you know you have. You can't let this thing beat you. You can't. As bad as the pain is and as scary as the immediate future might seem, do try to give yourself some perspective. You don't have cancer, and you aren't struggling to breathe with every breath like someone with emphysema. We all here know how bad butt pain is, so I am not trying to minimize what you got through everyday. I am just trying to offer you perspective. Think about the child you will one day have when all this is finally over, the little life you'll bring into the world. You have a lot of happiness ahead of you, but you also have a struggle that will one day end.
Now that your CRS sees that you are not healing, perhaps he will redouble his efforts. You may need to see another CRS for a different opinion and perhaps a different approach.
God bless you and keep looking for an answer as to why you just don't heal right. There is something (obviously) different in your case and you need to keep searching to find out what that is.
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Re: surgery #3

Postby cherylk » 21 Oct 2008, 20:16

Juney,
Here's hoping you get healing soon and some answers to your situation.
Cheryl
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Re: surgery #3

Postby Fissulyna » 21 Oct 2008, 20:30

Ohhhhhhh Image Image Image :( - I am sooooo sorry Juney - I mean , this is just unbelievable :( Image !!!! Juney - did you ever had colonoscopy done and some blood-work to exclude inflammatory processes going on ??? Did you ask him if this is first case he ever had that is not healing? If yes, maybe he should consult his colleagues and ask for their input. Did
they ever try anti inflammatory suppositories on you ? I really hate to hear that you are not healing Image - this sucks BIG DEAL ! I can only imagine how frustrating it is now for you and how sad you feel :( Image - I know that whatever I say is not going to help right now when news are so discouraging - but never give up hope Juney ! People heal from all kind of diseases , even terminal ones and to astonishment to all of the doctors - you just have to find "the magic bullet" , one that will do magic for you . Can he take a small sample of tissue and send it to pathology lab ??? They can examine it under the microscope and see changes on the mucosa if there are any. I mean, something must be going on that is preventing you from healing . I just hate them do that "try and error" on you any more - you really had enough of all of those !!! They tried already chemicals - ask him about anal flap !!!! If he does not do that, somebody IS !!! OMG - I am so sorry, so sorry Juney. I am sure that there is a way for you to heal - you just need to find it Image and you already suffered too much ...Please try not to despair - it is hard - I know :( . Just please don't give up - bug them to no end until they find solution for you and what is preventing healing !!! I know that you are now with private doctor , but you paid a BIG money and keep him accountable for his work. Make him do some research and do consulting !!!! Gosh darn - this is just maddening !!!! I wish I have a magic wand or have a magic words to
ease your worries and pain :( - just fight Juney - make them look into all possibilities and never forget that all is possible - :nevergive:
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Re: surgery #3

Postby Guest » 22 Oct 2008, 06:36

I think our Fissy girl has some great ideas. I am a slow healer too and it was so discouraging when the doctor didn't seem as eager to try to help me as I so desperately needed. There must be something going on that is inhibiting your healing. Do you supplement with zinc? How much protein do you get? Have you tried glutamine? Have they ruled out Chron's disease? I think you need to get some blood work done with a nutritional panel.

I am so sorry. Last week you were doing so well and felt optimistic and things seemed to be on the right track. What is your pain level like? I just want to give you a big hug and tell you to hang in there. I know how tiring it is when you just want to heal like "everyone else" and get on with your life. I do think there must be some kind of inflammatory response going on that could be hampering this whole thing. I wish I could go with you to your appointment and say this is unacceptable and what are we going to do.

Please hang in there. I know those dark days are atrocious. We won't give up on you and you don't either.
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Hang in there

Postby bherna1 » 22 Oct 2008, 08:29

Hang in there. I would be upset too. Will keep you in my thoughts.
Take Care
Bernard
juney wrote:i had my 6 week appt today and my worst nightmare has been confirmed. i'm not healing right. the outside is all healed up, still pretty swollen with lots of sensitive scar tissue. but the inside is still inflamed and bloody. it's not healing on the inside. even the dr was confused why it hasn't healed yet. he wants me to use the Recta-gel that i tried back in July, twice a day for 2 weeks. then he will try applying a chemical to the wound inside, i'm assuming he's talking about silver nitrate.
i'm so unbelievably miserable right now. i knew the pain was bad and the same as i've always been used to but i just didn't want to believe that the surgery didn't work. i'm at the end of my line. i mean what do you do when you've had 3 surgeries and none of them work?! i don't know what my other options are. i cannot deal with this anymore. i'm out of positive thoughts and hope.
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Re: surgery #3

Postby happyass » 22 Oct 2008, 09:04

hi juney,
don't lose all hope yet. the good thing is that it seems to be healing on the outside first. perhaps you are special in that you heal outside then inwards.....you never know. we are all different and don't respond the same way.
perhaps because the tissue isn't healing on the inside, that can be due to something else - do you typically heal well after a cut or big sore? perhaps it is just the way your body heals.
i would wonder what to google next to find some ideas or possible solutions. i do like the anti-inflammatory suggestion fissy threw out.
i know i am not in your shoes, but please don't give up. that is the last thing your wounds need to hear in your tushy! give them hope, give them love....and in time, this is all going to work out. but you need to change those thoughts right now...else your body is just hearing a big "give up"...and really, it needs to hear that you are behind it 100% and that your mind is going to shower it with every positive thought you have.
think in the future where you will be fine, and your bottom will be happy. think and picture that. keep that with you as you deal with your healing - which may be painful and challenging - but you are healing.
slowly. but healing.
you can't rush it. but you can help it.
hugs juney! Image
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Re: surgery #3

Postby Corsi » 22 Oct 2008, 10:38

Juney, I really feel so sorry for you :) You have been through so much. I understand your desperation after 3 surgeries, but as other say - don't give up sweetie.
Hope your CRS will be on your case to help you, and that you will be checked for other things that can cause these problems.
Image Corsica Image Image
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Re: surgery #3

Postby juney » 22 Oct 2008, 11:33

Kim, fissy, lecia, bernard, gareth, cheryl, corsi.... thank you so much for your kind words. as always it's so reassuring to hear from people who also know the feeling of frustration that goes with these things. you guys are all right, i need to keep a positive attitude and things will look up eventually. my parents and i brainstormed all evening yesterday about what i can change or try to fix this. i've also written down all of your ideas (fissy & lecia you especially have some great ideas, thank you) i think i just need to re-evaluate everything about the way i've been dealing with this.
i am also beginning to worry about chrons now. i had a barium xray done a few months back which was normal, but i never had the barium enema which my most recent surgeon actually recommended. i pretty much urged him to just go ahead with the surgery b/c i don't have any other symptoms or inflammation except this one area. but now i'm thinking i should have some more extensive tests done to rule it out. i called my dr today to ask if he knows of any oral anti-inflammatory medications that might help. when he or his nurse calls back i'll mention chrons and see what they think. i can probably get the tests done cheaper at kaiser if i can get someone there to refer me.

as far as healing in other areas, i think i'm pretty normal. i've actually always had a lot of skin issues (i've had ringworm more than once, eczema, and other rashes here and there). i also scar pretty badly in certain areas. i've had cortisone injected into a scar on my hip to shrink it, and now i have an appt for steroid injections into a scar on my neck from a mole removal. so maybe i'm not as normal as i thought.
i'm cutting back on my supplements because my stools have been really loose and frequent the past week or 2 and that adds to the irritation. i'm going to try only benefiber and stool softeners. i'm also going to stop eating anything citrusy or acidic that might be affecting the wound on the way out. i stopped drinking alcohol 2 months ago, which was a good decision i know. i'm also going to look into macrobiotics (thanks to gareth!) and see if i can eat more naturally or even healthier than i do now. i'm going to scroll thru the diet posts and see what other tips i may have overlooked in the past.
my pain now is basically irritation, burning, and an overall raw feeling during BM and all day after - like what it's always been at it's worst. i still have the same pain when sitting and standing up from sitting, which the dr said is due to the inflammation inside. i honestly feel like i never even had the surgery, except that now my a**hole looks different and thank god i haven't noticed any mucus.
overall i feel more clear-headed than i was yesterday. it helps to have all of you rallying behind me and also to be living with my parents now and not have a job. i feel like i'm so far behind my friends who have great careers and are making money, but i have to try not to let that bother me. my time will come. i feel like i was given this free time so that i can get more serious about treating this problem. it may not have gone as i expected the past 6 weeks, but i'm going to keep trying. i'm so glad i have so many people in my life (especially you guys) who aren't willing to give up on me or stop encouraging me. if anyone else has any ideas at all, please let me know and i'll look into it. Image
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Re: surgery #3

Postby happyass » 22 Oct 2008, 11:45

juney...don't feel bad about your friends and their careers and what money they are making.....your time will come......for now, yes, concentrate on this issue and get well.
i was looking over the michio kushi institute page and since you are not working yet, even i was tempted to quit my job and just jump right in.....they have a volunteer program for 17 weeks - costs $850 as they will supply you with room and board and meals in exchange for working 40 hours per week at the institute. you would be immersed with the macrobiotic way of life in the mountains somewhere in massachusetts.
i was so excited that that is where i would love my life to take me next........
working 9 to 5 just isn't cutting it; i don't care how much money i am or not making.....
the only thing stopping me is that i have the pug and cat and fish....the sig other can take care of himself...but my pets, they are my thing.
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Re: surgery #3

Postby Guest » 22 Oct 2008, 11:48

I think it was smart to cut back some on the Vitamin C. I know it is very good for us and helps with healing but too much is acidic. I cut out my 500 mg supplement and just get it from my multi-vitamin and foods. Vitamin C seems to be put in just about everything it seems (like my protein bars) that I was getting enough that my bottom burned from the acidic nature of the poop.

Another thing that delayed my healing was that I had no good bacteria in my gut. I had nothing but the pathogenic kind so I did end up needing to be on Cipro but it helped the burning. Now I am recolonizing with probiotics. You might want to look into Garden of Life Primal Defense probiotic-it has soil minerals/microorganisms too which you just don't find in food since our soil is so depleted. I wonder if you are too acidic. They do have that pH paper that you can use for a saliva test and see if you are acidic or alkaline in your body. That can throw off a lot too.

Taking care of your gut will boost your immune system too and helps with healing. There is a strain of probiotic called Saccharomyces boulardi that helps to protect the intestinal lining which I take every day. It is in the Primal Defense but I also take extra that my doctor gave to me.

I am glad your parents are there for you and are able to help you brainstorm. I know that always made me feel better to come up with some options. It was when I felt like there was nothign else to try that I felt hopeless.

What is all the money in the world if you are miserable and hurting? Your time will come.
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