Hello and looking for advice

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Hello and looking for advice

Postby marinboy » 23 Mar 2012, 17:51

Well I guess I should start by saying what a great resource this has been for me. I have learned more here than from any quack I have seen (lol).
I will try to make my story as short as possible. My problems started five months ago. I started to get a burning sensation in my lower right abdominal area and my bowel movements became very soft and loose. Well they did every test in the book (CT scan, colonoscopy, blood work and a pill endoscopy) the results came up with nothing. My Gastro Dr said I probably had a pinched nerve in the abdomin and a slight case of ibs. Finally after five months of pain in bed I began to recover. The final test was the pill endoscopy, I had to do a clean out and the next day I felt fissure symptoms but not bad, no blood just burning for a few hours. At first I thought they might be hemmies because over the five month period I was eating tons of starch (white bread and rice) and pushing hard to release gas and bloating resulting in skin tags or hemmies. After a week I decided to visit my general Dr to get things checked out. Well he did an exam that was extremely rough! Big mistake! The next day I had a bm and had lots of blood... of course on this forum I do not need to explain the glass shards pain etc. I dealt with this pain and blood for a week and saw a CRS. She prescribed me nitro and Valium, she could not do a full exam since I was in so much pain. Long story short I have been in bed for five weeks now just lying on my side. My bowel movements (just one in the morning) have been soft, sometimes too soft and I retore about a week ago. During a bm I have just slight pain... but after I am in spasms for up to nine hours. After that I can walk but not for more than ten minutes before the pain is too much and I have to take a bath or go back to lying on my side (btw I take up to seven baths a day). I feel very fortunate since I am self employed and can take time off as needed. Also I am lucky to have a girlfriend who has done everything for me, I could not go through this without her. I called my CRS a few days ago and she mentioned Botox, I am due for a visit with her this Tuesday.
Thank you for reading, now I have a few questions for the vets out there. First off I know everyone is different but has anyone else been stuck in bed for five weeks with one of these nasty AFs? If so how long till you could cook or sit or go out in public? I have made the personal decision to not do the botox, I am scared of the lis... but at this point I feel totally ready. Is it too early for this kind of thinking? I know this has been said 1000 times, but I just want my life back (1001 lol). Anyway thanks for listening to my rant. Any input or advice would be great.
Marin boy
PS I have been following everyone's recovery or set backs everyday since my AF started. I have been praying and sending good thoughts to all.
Also sorry about the spelling, can't figure out my spell checker.
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Re: Hello and looking for advice

Postby workingonit » 23 Mar 2012, 21:42

Hey marinboy,
Welcome!
Gosh, it really runs the gammit how long people suffer before they do LIS, botox, dilation, or start to get better without.
Are you doing the nitro at all? Some people find at first the best way to apply it is with a qtip, because it hurts too much otherwise.
I have not had LIS and I don't have spasms, so I can't really help much, but you know there is a wealth of info here.
There is the regular search up above. Then there is a search box in the 'portal' section. See next to 'home' up above.
Anyways, we feel your pain and hope you find a path to healing soon!
-Tanya
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Re: Hello and looking for advice

Postby Savaici » 24 Mar 2012, 10:07

Hello,
What is happening to you sounds just like what is happening to me! Lying down, pain for hours etc.
I am planning on the pill endoscopy, and would be interested to hear how that went from you.
Also, you might like to read posts by wecc, who had a Standardized Anal Dilation in NY, something that I hope I will be able to have. Here is his link:
http://anal-fissure.org/t4104-my-standardized-anal-dilatation-this-morning
Sav
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Re: Hello and looking for advice

Postby marinboy » 24 Mar 2012, 11:00

Hello and thank you for the replies.
Tanya,
Yes I have been using nitro three times daily, not really doing much for me but I will continue with it. I guess I am just impatient to do the lis because I have been in this bed for five months and want to get exercise and live normal again. Did I read in another post you used to bike around Marin? Thanks for your support.
Sav,
The pill endoscopy is easy except for the clean out. You just swallow the pill and then put a belt on that takes pictures for eight hours. The Dr said you should see the pill in your bm the next day or so. He said some don't see it at all but not to worry, some just miss seeing it. I was lucky and saw the pill the next day. They gave me my results five days later and found no damage with my small intestine except slight inflammation. Its not perfect because sometimes the camera in the pill can be facing the wrong way. Anyway its easy and nothing to fear.
Regarding the SAD I did read about that. I called their office in NY and the lady was very helpful and swore the results were impressive. She told me they have had a few people travel from Cali to have this procedure done. I also called UCSF medical center after reading the thread. The nurse said they do not do this because it has not been proven to be affective for afs (who to believe). I have been considering the SAD, but flying to NY sounds difficult for me right now. Sav, how long have you had your af? Are you able to walk or sit or go in public? I am just trying to figure out how long till I can at least go to the store. Thanks for your reply. I plan on updating my findings on the SAD thread in the next day or so.
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