what to do

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what to do

Postby jr2 » 14 May 2012, 19:32

Going into month 9 of suffering with multiple fissures. The two I had on the anterior side finally healed on their own after about 7 to 8 months. I have two on the posterior side that aren't improving. My CRS, gastroenterologist and my own gut feel have all repeatedly advised me that LIS is a very risky procedure for me for several reasons. First, I also suffer from multiple other chronic health problems, the most relevant being severe digestive dysfunction. While it could be IBS, testing has been inconclusive as to whether it could be Crohn's disease. The digestive dysfunction involves a lot of diarrhea, and even on the best days means multiple toilet trips, usually at least 3. Along with it is pretty intense urgency that makes it mandatory to get to the restroom very quickly. I've had 3 surgeries in my history, all of which have meant lots of complications and chronic problems that I still live with. I am severely underweight.
Soooo...
I'm worn out.
and feel stuck...
I'm at high risk for every complication there is for LIS, and also at increased risk for both the surgical site and the fissure itself not healing if it is true that I have Crohn's.

My body also tends to register pain in an exaggerated way, and turns pain on but doesn't turn pain off. I'm living with the results of 3 surgeries to prove that and I'm always the patient that makes doctors scratch their heads because they've never seen these kinds of complications before. I can't tolerate narcotic painkillers. I have serious doubts about how I would cope with the post surgical pain when the loose stools set in very soon after the procedure and because I know the pain will be very exaggerated for me. One of my doctors said i'm just wired for pain.
I feel trapped and more than a little at the end of another rope and have no idea what to do..
I know no one can possibly have any answers for me, but I'm just so so tired tonight. My life before this was severely limited as it was. This has turned me into an invalid.
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Re: what to do

Postby Bottominal Blues » 14 May 2012, 20:14

JR,
I wish there was something I could say to help you, you deserve at least that as you are so supportive, informative and caring towards everyone on this forum. I look forward to reading your advice or words of encouragement on this site - if only I knew what to say to help you. Please know that I and many others are thinking of you and sending healing thoughts across the miles.
Anne
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Re: what to do

Postby mike900 » 14 May 2012, 20:17

I suggest to find top CRS in the city you live, top experience doctors always have better solution. You may find top 10 doctors in your city either in magazines or search google. Use your judgement.
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Re: what to do

Postby Sana1 » 14 May 2012, 21:51

Dear jr2
Get a strongest sleeping pill your body accepts. Maybe 2. Tomorrow will be another day.
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Re: what to do

Postby sailorgal » 15 May 2012, 05:01

jr, I am so sorry you've been dealing with this for so long and it sounds like the "worst case scenario" has unfortunately been your normal. How did this all begin? And if you don't mind me asking, what are the other health issues you are struggling with? You sound very knowledgeable in the medical management of the anal fissure and dealing with chronic pain. I imagine you've considered (if you haven't done so already) cognitive behavioral medicine? There's something I've learned within my practice that when someone has experienced significant chronic pain, it becomes "hard-wired" so to speak in the central nervous system and can develop something of what you describe (exagerated pain response) called Centralized Pain Syndrome. I imagine you are seeking a multi-modal pain managment plan supported by several health practitioners (the best pain centers don't rely only on pharmacological pain management strategies but recognize the effectiveness and importance of approaching pain in a "multi-modal" fashion as those cases have the best outcome). ie: pharmacology, cognitive behavioral counselling, physical therapy (where/when appropriate), social work, etc. I'm sorry if this is something you are already engaged in and I'm just telling you something you already know and are doing. But for whatever comfort it may bring, please know that your responses have been instrumental in helping me navigate through my own situation in regards to the pain, outlook, insight, management, etc. Thank you for being able to continue to be so strong, supportive and compassionate towards others even if your pain probably trumps all of ours. I will keep sending you healing vibes back your way too. I imagine that they gain in strength and momentum each time they get bounced back and forth to each other!
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Re: what to do

Postby Neen » 15 May 2012, 09:30

So sorry jr...you need a big hug Image ...I wish there was something I could do. Well actually I will pray for you as I do believe in prayer. Please try to stay positive. I know that can be tough...we all have those days, but you seem to have so many more things going on and I am truly sorry. I hope you have someone who you can let out all your feelings to. I called my mum many times and cried to her when the pain was bad. Good luck and stay hopeful!
Maureen
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Re: what to do

Postby jr2 » 15 May 2012, 10:23

Thank you all so much for your kindness. It is so appreciated. I cried so hard last night I finally fell asleep, but this morning has already been hell. And that's after only the first visit to the bathroom today. It's going to be very rough today. All the support is so wonderful.
Sailorgal,
Unfortunately, while all of what you mention would be wonderful it is out if the question due to cost. My medical history is so long and so full I am uninsurable by regular insurance so I can only get very very expensive insurance for sick people, the irony being it really doesn't cover much of anything so I have huge out of pocket costs that I already can't afford. The insurance is really just for something huge and catastrophic like a major surgery or long hospitalization.
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Re: what to do

Postby Sue27uk » 15 May 2012, 12:10

Aw JR, I'm sorry to hear you are suffering like this. I would try and see someone else if possible and research into finding a different CRS to see what they say. I wish I could say more! I am sending all my best wishes your way, and healing thoughts. I know what it's like to get down about this stuff Image
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Re: what to do

Postby 44alegna44 » 15 May 2012, 14:31

Image I'm so terribly saddened to hear of your anguish and discouragement over this whole awful situation you find yourself in. I too wanna send you a comforting hug Image I know how low this can get someone, and that's when there are treatments out there to help us....so I am so truly sorry that right now you feel so stuck....but I too shall pray that the answers will come that bring you the relief and healing you sooo deserve. Image
Jr, how about acupuncture for your pain? Could this be a viable option for you or one that you may have considered....I keep thinking there has to be something that hasn't yet presented itself to aid you through this pain that's gone on way too long.....You have been so generous with your time, knowledge, support and encouragement...and with the caring quality that you offer this to us, even though you are in the midst of your own dilemma, is just so inspiring to so many of us here. I wish there was more I could say, truly I do, but I hope knowing how much I care about and appreciate you is something that helps you in some way. Image
May tomorrow be a better day Image
Angel
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Re: what to do

Postby jr2 » 15 May 2012, 15:28

Angel,
Thank you so much for your caring words. I'm just really having a crisis in the internal coping department department right now, so much so I can't even fathom one more phone call or one more doctor appointment. That being said, I have considered Chinese medicine. I could try herbs and/or acupressure, but even an acupuncturist I saw some years ago for my other health problems said he had never seen anyone so sensitive and have such a strong adverse reaction to the needles and the herbs he had given me. He would put those tiny needles in and the muscles in my body would go into such deep spasm they would lock like that for weeks and cause widespread nerve burning that would radiate everywhere. The other problem is the cost as it would be all out of pocket.
I feel the same way about your posts too. You are always so caring and so present to people here, with just the right combination of words and perfect emoticons. Really. It means so much to feel encouraged by others during these darkest, weakest times.
Image Image
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