Seven months and counting!

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Re: Seven months and counting!

Postby Savaici » 05 Feb 2011, 19:43

@frustrated. I know exactly what you mean about the $$$ on creams. My latest is the zinc oxide. I am hoping to persuade my doctor to the Diltiazem gel, though he has never examined me. I will certainly be able to give him the low down (excuse the terrible pun). I never in my life imagined pain that would never leave me or obsessing about what goes in and come out of my body. I have lost quite a bit of weight, though with what I eat I try to keep up the calories with Ensure. I still have dairy, skim milk to keep up the calcium, which I put into my coffee. Only have half a small cup - down from a large. Good luck to you too. I am so glad to have found this group. Do not feel so alone with the pain of it all.
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Re: Seven months and counting!

Postby happyass » 05 Feb 2011, 23:16

if you can get diltiazem and lidocaine 5% ointments - individually but at the same time, it was a Godsend to me after having anal issues for almost 7 years.
mind you, my fissure was dormant but i had a very active skin tag right on it and the diltiazem and lidocaine did wonders right before LIS.
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Re: Seven months and counting!

Postby Savaici » 19 Feb 2011, 09:49

I started the Diltiazem gel with lidocaine in it and don't know what it is but I have awful stomach pains, butt pains and generally feeling awful. This is the first time that this has reduced me to tears with the pain. I keep wondering where I am going wrong with this whole thing. I know that I am not eating as I should, but every time I go off what I am eating each day, I suffer for it the next day. I have had stomach ache on and off since yesterday (very much on now) and the skin next to my anus, damaged by so many ulcers from Behcet's, is excruciating. I am so worried and so wish there was a GI up here where I live. I am getting to the stage where I just feel like asking one of the general surgeons to do an anoscopy and tell me what is happening in my rectum. But, he is the surgeon who said I had piles and prescribed Analpram when I have thinning skin. I am so despondent. I take nothing for pain as I worry that this will just give me more problems. I am usually a positive person, but this is taking me low. Sorry for the rant.
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Re: Seven months and counting!

Postby Bumbutt » 19 Feb 2011, 10:48

Poor Savaici! Image I can imagine you feel down - you were waiting for the diltiazem to help you out. I don't know much about diltiazem - I know Dawn developed a sensitivity to it, which maybe she can comment on or you can find in her posts.
I do know that I felt that rectogesic at some point made my spasms worse - but since I don't really know what is going on in my butt (I haven't seen a crs yet), I am not sure why. I stopped using it, and felt better. Started using it and felt bad again, stopped it and felt better. Seemed to me it was the rectogesic then.
I wonder if your stomach ache is related to the diltiazem or something else - whether the flu, your food, anxiety?
Can you stop the diltiazem and see what happens?
That was the approach I took - try to take one factor at a time and see what difference it makes.
Image
Here are some relevant posts...
http://anal-fissure.org/t1998-diltiazem-side-effects#45801
and a site that was tipped by StevePain...
http://heart-disease.emedtv.com/diltiazem/diltiazem-side-effects.html
... indigestion is one of the side effects... Image
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Re: Seven months and counting!

Postby Savaici » 19 Feb 2011, 12:26

Thanks so much replying. I am going to stop the Diltiazem and see what happens. Also, I have been taking these tablets for inflammation and am going to reduce them by a quarter. And cut back on the Vaseline. When I first started having problems, my stomach ached sometimes for 24 hrs at a stretch. I wonder too if I might be allergic to the lidocaine in the gel. My mind just goes from pillar to post with what might be causing it and how to relieve it the quickest. Also have a really heavy feeling in my bladder, and the sensation of wanting to pee all the time. I have had this virtually since day one with this whole thing, with one episode of cystitis.
I have not seen anyone GI related since all of this started, only the
appointment coming up first week in April. I am now beginning to wonder if I should be seeing a surgeon instead of a gastrointerologist. And it is a long way to go for just a consult, so wonder if I can get them to do some
tests while I am there. Right now I cannot even envisage an anoscopy,
but this doctor does capsule Endoscopy and I wonder if I can sort some
Thing out there. Having an auto immune disease, maybe they could find
something out in that way.
I will have a look at the links. Tks Image
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Re: Seven months and counting!

Postby happyass » 19 Feb 2011, 12:57

hi savaici,
i am sorry you are in a lot of discomfort.
i am trying to learn more about behcet's disease and it seems that it can be anywhere in the body. so i am not sure if you have it affecting more than one system or if is limited to just your anal / genital area?
i know some people have had a response with diltiazem initially but in a couple of days, lessened and went away; others couldn't tolerate it.
here are some of my thoughts altho i am not a doctor and i would prefer of course that you discuss these further with your CRS.
according to your profile, you are here in the USA. what city?
since it is the weekend, and you mention that you do not have any pain medication, are you able to buy some Aleve, Advil, or Tylenol (you can save some $$$ by selecting a comparable generic brand). Chose only one as they are each different - one has naproxen, ibuprofen, and acetomenaphine.
Begin to take the one that you have experience with and that won't upset your stomach.
This hopefully will help a little with pain and offer some anti-inflammatory assistance.
**
Next, stop using the diltiazem but continue using the Lidocaine 5%. this alone should help provide you with some numbing relief upon going to BM. apply it before the BM and once after you have rinsed/washed the area post-BM. use as needed for pain in the anus.
**
Hopefully the advil or aleve or tylenol with the use of lidocaine 5% will offer some help on their own.
See how you feel and if the other symptoms you have today go away - as we could possibly assume it is from the diltiazem. Or perhaps it is just purely coincidental.
Since you mention that you have ulcers nearby the anus, does the diltiazem have an opportunity to "seep" into those ulcers? Perhaps that is a secondary issue that is causing you to quickly get the diltiazem in your body quicker. I am just not sure if the diltiazem is made for those non-anal ulcers.
**
i see that you are still having dairy in your diet.
if you can eliminate it and switch to a fortified calcium soy or rice milk. i have your same concerns about not getting enough calcium but if you have fortified calcium soy milk you get about 30% of your daily need there. add in an appropriate multi-vitamin on a daily basis and you can get another 30%-35% there. lots of leafy greens such as collard greens, mustard greens, turnip greens and kale as does oranges, nopales, and broccoli! making a delightful veggie stir-fry with added calcium-fortified tofu, you got your daily allowance met! and these will all be good for your tummy!
**
are you doing soaks in the bathtub 3 times a day with hot water and adding epsom salts? i am not sure how that would affect your other ulcers though....
will send prayers your way!
it sounds like you are under a lot of stress and that is another thing that you need to work on or find some distraction from so that you can take a break from all this stuff. i know it is easier said than done!
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Re: Seven months and counting!

Postby happyass » 19 Feb 2011, 13:08

just read your response to bumbutt.
i am a bit concerned that it seems you are taking other medications. you already take diltiazem orally for other uses.
i think sometimes when we get desperate - as i have been in that situation with other things that you start taking things left and right - we don't give our body a chance to excrete residuals out before adding in new chemicals.
i don't have an understanding of everything that you are taking.
that will complicate matters when giving you advice as there may or may not be any unwanted interactions.
i hope that you can take everything slowly, even though i know you want solutions and relief right now. i would hate to see you have side-effects from switching things too soon or adding them to quickly without having other stuff leave your body.
i don't know if taking diltiazem orally and then adding it to your bum via ointment may be adding these side-effects for you. did you discuss this carefully with your doctor?
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Re: Seven months and counting!

Postby cherylk » 19 Feb 2011, 13:36

Savaici,
I finally found your post! Sounds like you need to find a doctor that you can trust. Are you very far from Minnesota? I know we are still in the dead of winter, but possibly you could fly or drive to the Mayo Clinic in Rochester to get an opinion on your situation. The doctors from different departments all work in tandem there. Also, many people here have been helped using the squatting technique. Depression makes us more worried and then we get more depressed, and it becomes a vicious circle with more pain and more depression. I'll ask Dwight to include you in his prayers. He's better!!
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Re: Seven months and counting!

Postby Savaici » 19 Feb 2011, 14:19

Thank you so much for asking Dwight to include me in his prayers. Touches my heart.
I take 120mg of Diltiazem every other day. On top of everything I have mild Pulmonary Hypertension Exercise Induced. This was diagnosed at Mayo in Minnesota. What a wonderful hospital. I also take Lisinopril in a low dosage, and a quarter of a diuretic. I have cut down my pills over the past year. The gastrointerologist I am going to see is the only one at Johns Hopkins who has a holistic bent, and this is why I chose him.
Other medication I take is a very small dosage of Lorazapam to sleep. I cut down there too.
I will be SO glad when this passes. I guess I can take the pain of the fissure, but this has thrown me for six.
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Re: Seven months and counting!

Postby cherylk » 19 Feb 2011, 14:31

Ab pain stinks! I think it is almost worse than fissure pain!! Image
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