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New here...

Postby Guest » 20 Jan 2012, 18:58

but unfortunately not new to fissures. I've been getting them on and off for years, sometimes worse than others, this current bout being the worst I've ever had. Multiple chronic fissures both anterior and posterior.
Over the years I've used every cream imaginable, and years ago even brought the use of nifedipine to my doctor's attention, and to his credit let me try it way before anyone he knew was using it.
ILS is generally not considered a good option for me by both the surgeon and my GI doctor given the severity of bowel dysfunction I suffer from with a lot of urgency problems as well as a poor track record with complications from 3 previous unrelated surgeries.
This is the most discouraged I've ever been with these fissures. Like many of you here, life has been hijacked completely by the pain and anxiety and tears. On top of it my weight has dipped dangerously low. I eat a very healthy fissure friendly diet but my body has always had trouble maintaining weight.
Anyway, I'm currently using nifedipine and another one of my unique finds on the Internet that I brought to my doctor's attention. Topical carafate, a medicine prescribed to treat stomach ulcers. It forms a protective layer over the ulcer and also has some anti inflammatory properties. Fortunately I have open minded doctors who will let me try just about anything. The topical carafate has been a great addition in pain management of the fissures and does seem to promote healing, but I'm sstill in that awful cycle of retearing because my bowel function is just all over the place between diarrhea and stools that are too big and too many times per day.
Thank you to anyone who has read this far. The coping has bee so difficult and now for the first time in my life I have chronic insomnia too. I really hope by coming here I might be able to be of help to others given how long I've been dealing with these fissures, and also honestly am needing to reach out for some support from others I know who totally understand.
with peace and hope for healing for all of us.
jr
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Re: New here...

Postby dwarfs8 » 20 Jan 2012, 19:44

hi jr, i'm so sorry that u are suffering. I do hope that u wld find a healing routine and stick with it soon..
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Re: New here...

Postby workingonit » 20 Jan 2012, 20:28

Welcome!
Sorry you are an old hand at this.
Wish I could just have one regular bm a day too.
-woi
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Re: New here...

Postby Sue1962 » 20 Jan 2012, 21:21

Hey Jr2 and welcome. Sorry you have been miserable for so long. I noticed you said you are having many BM's a day. Are you taking a laxative or just a softener? These AF just stink and they are crippling. I hated every minute of it. I am now on day 11 post op from LIS surgery and I have never felt better, well not for 3 years anyway. So b/c you have IBS and anterior and posterior fissures they won't do the surgery??
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Re: New here...

Postby Guest » 20 Jan 2012, 21:35

Hi Sue, Dwarf and Workingonit... thank you so much for your welcome.
Sue... I am so so glad to hear you are feeling so much better after your surgery. What a relief it must be to feel like you're life coming back! Congratulations!!!! :)
My health history is so complicated... Endometriosis, severe bowel dysfunction (which may or may not be IBS or IBD), with problems mostly with diarrhea, but every once in a while i get thrown for a loop with constipation. My two doctors are very concerned about my ability to heal from the LIS. I have had 3 surgeries in the past, all of which have caused and contributed to ongoing chronic problems of varying degrees, so surgeons now look at me very cautiously. The fact that urgency is such a big issue with me already also brings up continence concerns, not just in the short term after surgery, but longer term as I age.
I take one stool softener and one magnesium tablet at night (the magnesium is more for my irregular heartbeat on the advice of my cardiologist)... Miralax is way too strong for me and keeps me in the bathroom most of the next morning, and also makes me feel very sick all night long.
sigh... so i'm kind of in limbo at this point... and pretty discouraged... i'm actually more open to the idea of a dilatation procedure with the vastly improved continence statistics when it is done in a controlled way. But that brings up all sorts of geographical problems as the CRS community doesn't widely or generally offer the procedure. I'm going to bring some info. to my next dr. appt. to see what they say.
Thanks so much for listening :)
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Re: New here...

Postby Sue1962 » 20 Jan 2012, 21:59

I totally understand!! There is a boardie, wecc who had standardized dilation, you may want to check his threads out. It is very difficult to find a CRS that does this. His is in NY. I am in MD and the closest one I could find was 400 miles away, that was not an option. so I had LIS. Your CRS sounds great!!! Hopefully, he can help you find someont that does this, that is not that far from you!! Feel better soon!!
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Re: New here...

Postby Guest » 21 Jan 2012, 11:08

Hi Sue...
Yes, I saw wecc's posts and PMd him and he was very kind to reply. I know what you mean about the travel. It doesn't sound like an option for me, but who knows what might happen. I don't know what my CRS will say when I bring her the info. but she really has been awesome in all ways and very open to trying things, so we'll see.
Thanks again for your well wishes!
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Re: New here...

Postby Savaici » 22 Jan 2012, 11:19

Hi there jr2,
So sorry that you have to be here, as I am too...though everybody is so kind and helpful here that that is a great joy. To share the pain is a wonderful thing, and when I am in it, a good feeling comes over me when I open the page and see the colours! Silly, but there you are.
I live way away from anywhere, far up in Maine, and anywhere that I need to go to requires a flight. But, basically, I am getting to the stage that I will fly ANYWHERE to get relief.
I am following wecc's results, and also val76 (she had S.A.D. done in Germany) had good results, though she did not have bleeding problems with BMs as I do. I believe that one other person on her has had a form of AD, but I have not been able to find him. I have an autoimmune disease on top of things, and am very fearful of more inflammation, and this is why Standardized AD appeals to me. Sorry if am rambling a bit, but just want you to know that you are not alone in this.
You said that your weight has dipped very low, which mine had, but I have kept it up at 122lbs for the past couple of months. This is through a ‘strange’ diet, which I worked out myself as I had so much pain, but it works for me and I am getting just about what I need from it, though am going to get more vitamins into things soon. (off to see a dietician this coming week).
I don’t take Miralax as I am one of those people for whom it does not work as it is just too strong. Take MOM and eat Metamucil wafers (cinnamon flavour and building up to ѕ of one a day). Like you, have always been loose or constipated and never can tell which is going to happen. I also have diverticulosis which I’m sure contributes to the problems I experience. That is why prefer to stay on track with the same diet every day as deviating causes problems for me. Hope one of these days to get back to real food, however. Oh how I do hope for that! We all do!!
You may have already done this, but if now, have you considered one of the top hospitals in GI problems such as Mayo in Rochester, MN, Cleveland Clinic or Johns Hopkins?
All the best to you. Image
sav
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Re: New here...

Postby Sue1962 » 22 Jan 2012, 13:49

I too have diverticulosis, and it never really played a part in my fissure. I never eat popcorn, peanuts or seeds, although now I am told it is perfectly fine to eat those. I also, have never had an episode of diverticulitis. Only reason I know I have it is b/c when they did my colonoscopy after my mom was Dx with colon cancer it was found.
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Re: New here...

Postby Guest » 22 Jan 2012, 14:04

Hi Savaici,
Thank you so much for your reply and for offering some of your background. I haven't really considered traveling for my GI problems, mainly because I live in an area where there are really good resources, and also because I'm really limited in what I can tolerate as far as testing goes. The one colonoscopy I managed to get through left me unable to eat solid food for nearly 6 months due to a very bad reaction my colon had that was never fully explained by any physician other than to say it was like it sent my colon into a permanent charley horse. Unfortunately, that one colonoscopy wasn't that helpful in shedding any light on whether there actually was IBD present. I am always one of those medical mystery cases where doctors scratch their heads like they are looking at an alien.
Furthermore, some years ago I suffered with a severe case of C. Difficile colitis as a result of antibiotics that took a couple of years to eradicate. While I had had problems with minor fissures prior to that, it was during that time that I developed the first really bad fissure and nothing has been the same since.
Then I had to have my gallbladder removed due to biliary dyskinesia (no stones, just a dead gallbladder), and that has wreaked more havoc on my digestive system, leaving me with chronic nausea and episodes of bile acid diarrhea (there is a medication for that but it is constipating).
So all in all, my whole digestive system seems to have both some sort of neuromuscular disorder and may also have inflammatory and autoimmune components. All of these are reasons why surgeons have become very hesitant with me, particularly with these fissures. Thus the appeal of the controlled dilation.
Traveling would be very very difficult for me in light of all my other health issues, and also since I am so sensitive to any changes in food, it would be even more complicated.
Anyway, yes, it is comforting to know there are places where we can come and not feel so alone. Dealing with the daily physical pain takes its toll in so many ways...
All the best to you too... May we all find our way to healing!
j
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