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Postby Guest » 20 Feb 2007, 05:51

hey guys. well i saw the dr for all my bowel problems and they are starting me off on the nitro cream. i really cant remember its full name but i no it was 0.4% dosage. i have to apply 2.5cm but the dr said to apply less in case i have a reaction? it sounds silly but ive put having this off for ages. im just dreading the effects it could cause as ive got a long history of dizziness problems and i just didnt want more potentional problems. but after the pain i had at the weekend i know i have to do sumthin. Did many of you feel a little bit overwhelmed/scared by what is going on? I feel like ive been a right wimp for not getting on with it sooner and the thought of surgery still scares me, yet i know it cud be worse surgery. Do u all feel that u get enough support from the drs and ur friends??
thanks again for ur replies, i really appreciate it.
xx
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Re: support

Postby Guest » 20 Feb 2007, 09:47

Hey Gracie,
I just sent you a message but wanted to reply here too. I can totally empathize with your feelings of being scared and overwhelmed. When you have health issues it can be hard to know what decision to make especially if you have underlying conditions that contribute to it too.
I think getting the cream is a good step. You can always stop it if it causes problems but you'll never know if you don't try. I wanted to mention the cream I am using because it is not supposed to bring on headaches. It is Diltiazem cream at 2%. It is a beta blocker that is used with people who have high blood pressure but it is compounded into a gel. If the cream you are taking causes problems ask your doctor about this one. I can even give you the phone number of the pharmacy that compounds it if your pharmacist doesn't know how to make it. The guy that helps me at the pharmacy is very nice and said it was pretty easy to make.
I have people in my life who love me but are not sure how to support me. Maybe because it is a private area of the body and people are embarrassed though I have long since given up embarassment after having so many procto-exams and other things. Also because it is not something people can see and you look alright on the outside it can be hard for people to identify that you are suffering. It took me losing 20 pounds before some people really "got" that I was in a lot of pain!
That is what is nice about this forum and I know that IBS and other bowel disease is getting more recognized and I wonder if there is a support network for that too.
You are very brave and you will get through this and I will pray that your IBS or Colitis will be able to be controlled so it doesn't have to control you.
Good luck with the cream. Also try to get in the tub and soak too. That really helps to relax the bottom. I wish I had a TV in the bathroom or could figure out how to get a laptop in there without electrocuting myself, but for now I will have to settle on a book. :D
Take care,
Lecia
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Re: support

Postby happyass » 20 Feb 2007, 21:06

marmite,
it's always scary to go see a doctor who has to look at something so private and yet an area that you wish you didn't have pain in or could have other things in.
i am still scared of the colonoscopy, more for what it can detect/expose, rather than the procedure itself. i've been hiv+ for more than 16 years and well, i've taken lots of hiv medications that i wonder if it has damaged my intestines, etc......
anal fissures are common in long term hiv+ individuals and well, although i don't believe my fissure was hiv+ related, i have always been concerned about taking these harsh drugs to keep my immune system functioning/protecting me but also what it can be doing to me on the inside.
anyway, despite not having the fissure drama anymore, now i have the colonoscopy drama to deal with. but it will all be over over soon.
and you will find the best path for your healing and you will soon be done with your fissure friend if you have patience, hope, and keep listening to your body to tell you if something is working.
i do believe sometimes, that belief and hope sometimes are the best medicine ever. i realize than when i turn 38, if and when, that i will have lived 50% of my life as being hiv+. isn't that amazing? and i really owe it all to having hope and belief in God and that somewhere in my body is the best shaman ever.
find your shaman marmite!
:cat:
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Re: support

Postby Guest » 23 Feb 2007, 16:30

hey thanks for the replies, i have been on the cream for 3/4 days now. its weird i havent had the full dose yet but ive had a few weird effects. im a lot more tired than b4, and my heart tends to go stupidly fast if i do any exercise. also made me more itchy around that area. the tiredness today is overwhelming i feel completely out of it. the dr says this cream is my only option???? is that true? she said if this doesnt work all i can do is surgery. but what about the other beta blocker cream that lecia mentioned or is that just for america?? i really dont want to give in to the tiredness cos i figure if i do i wont be able to get on with stuff again if u no what i mean. im going to the loo not long after i put th cream on sum days so i hope that doesnt mean it comes straight bk out.lol. the dr says i lost 2 kg over the weekend but they are going to see how the gut goes.
lecia thanks for ur message i will reply tomorrow or bit later when im a bit more with it :-)
happyass-i cant believe how much uve been through, ur words were inspirational. when is ur colonopscopy? ive had two of these so if u have any questions about them im sure i cud answer it. goodluck with it. what are u on for ur fissure?
xxxxxxxxxxxxxxxxxx
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Re: support

Postby Deleted User 5 » 23 Feb 2007, 17:45

Grace,
On the anal fissure mailing list (which I dropped because it was too much e-mail in my inbox) there were other Brits who complained that they were unable to get the Nefedipine or the Diltiazem, both of the channel blockers. You may be outta luck, which is a shame.
Expect vascular "weird' effects from the nitro. But slowly your system will adjust to it. It can work; I feel that at least it will give you some releif -- I hope it does! Be careful; I'm surprised you haven't complained of a headache as that is the most common side-effect and happens to nearly everyone. It's why I refused it when my first surgeon offered it ( I already have migraines). He didn't seem to know about the other two creams.
Sorry to hear it's been rough -- I'd call the Dr. and ask about the tiredness.
Hugh Image
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Re: support

Postby happyass » 23 Feb 2007, 18:55

grace,
aside from surgery, if you begin now, you may be able to benefit from macrobiotic principles. they make sense and they don't cost you anything. you have to read and learn and then find your way to make the best of it, but if you find yourself at your last wits before surgery, then there is nothing to lose and everything to gain!
in addition to macrobiotics, it would be great if you look into acupuncture if you haven't before. combining the two along with a form of qi gong and/or yoga and/or meditation, will go a long way.
i am doing the colonoscopy more for hiv+ reasons than fissure reasons. my fissure has been healing great. but as of late because i have been in a highly anxiety state - car accident, work has been a ****, relationship issues, not having my fun to drive car to allow me to escape, and well, worried that they will find something ominous in the colonoscopy (i hope not) - i have had unstable BMs and they have been more on the liquidy side and explosive side already (see Hugh how my emotional state can cause me to have bad BMs....) that they have begun to irritate me down there.....i can only imagine what Sunday will bring as i will have to take lots of laxatives for the bowel prep....i'll probably have more explosive BMs and retear/or reinjure the fissure Image Image Image
as soon as the colonoscopy is over, i will have gotten rid of about 1/3 to 1/4 of the worry/anxiety load i am carrying right now.....
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Re: support

Postby Guest » 23 Feb 2007, 19:19

Wow-Gareth-you are shouldering a lot! You have a great outlook on life and are so health conscious, and you take the time to help others who are hurting, all these things will come back to bless you.
Is someone going to go with you and take you home? I know you AF friends will be thinking about you!
Lecia
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Re: support

Postby Deleted User 5 » 23 Feb 2007, 19:51

Gareth,
Stress can wreak havoc on your immune system, which you *don't* need, buddy! I'm praying that all your stress will ease up soon!
To give back some of your advice, try some yogic breathing a bit before you eliminate the "liquid" Sunday and *maybe* you'll have a bit more control. Just a minute or two to focus your mind and energy -- I know you won't be able to hold it long!! :bounce: :bounce:
But try not to stress -- I'll be sending that signal your way. After what I've been through, the thought of a colonoscopy doesn't phase me -- so don't let it phase you. You may experience what I did -- even though my fissure was at its worst, i.e., the go-lytely did not hurt(burn) until the next morning -- I tolerated the day before VERY well! With you're fissure potentially healed now - you may come through this with little or no pain at all.

Lecia's concerns are well-placed: it will be important to have someone drive you there as well as drive you back, as you *may* have some strong burning pain if you're still crapping the morning of the procedure. You won't want to drive at all.

I'm sure you've taken care of all that: we just don't know:?:

Meditate with a clear focus only on your breathing some this weekend!

Hugh
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Re: support

Postby Cheryl » 24 Feb 2007, 06:31

marmite wrote:Do u all feel that u get enough support from the drs and ur friends??
thanks again for ur replies, i really appreciate it.
xx

Hey Grace
I got quite alot of support from hubby, he has been wonderful, letting me scream and cry on his shoulder whilst in agonising BM's, running hot baths for me etc etc
My family on the other hand are sure ive been shoving stuff up my arse to get this problem in the first place...?? Thanks mum & dad!
The drs seem to think my arse was their playground!
My surgeon however was great - a little lacking bedside manner, but better than i expected, had some sympathy for me and gave a crap about how i felt..
I think what matters about all of it is how you deal with it, hold positive thoughts and atleast know that we are here for you - keeping your frame of mind positive will help you alot, and if you do have friends, drs, family to help you then that is a great bonus!
Most of my friends didnt know about it, only 1 close friend... im not sure id be comforatble telling everyone.
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Re: support

Postby Cheryl » 24 Feb 2007, 06:33

happyass wrote:as soon as the colonoscopy is over, i will have gotten rid of about 1/3 to 1/4 of the worry/anxiety load i am carrying right now.....

Gareth i wish i could give you a big fat hug right now... heres praying everything is going to be ok for you Image Image Image Image
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