I'm new

Please come in! Start your own personal thread, tell us a bit about yourself...and your fissure, of course. Welcome!

Return to New to the forum? Introduce yourself here



I'm new

Postby Kathy64 » 03 Nov 2016, 11:01

I'm not sure how to work this new forum....but here I am! I hope I can find support from others who suffer like me! I have been dealing with an anal fissure for twenty years when I was first diagnosed. When I have a flare up....it has always healed itself after several months. Last spring, I experienced another flare up and this time, it will not heal. I have tried everything! I was scheduled to have a fissurectomy and Botox two days ago and I canceled out of pure fear! This morning....I sit here in pain....the agony lasts all morning and well into the late afternoon. It is a daily pain.....I take Advil every single day.....a prescribed compound ointment which I need help inserting into my rectum every single day.....it is not working! It is so mortifying.....it is so degrading. I'm losing hope!! I'm so tired of crying! I just can't imagine going through the surgery only to find the post-op pain is worse than the pre-op pain.......I worry about every bowel movement! Will I have a bowel movement at work? At night then lay awake in pain? It is starting to control my life. My family is tired of witnessing my pain... the last time I went to the GI.....I walked out with a script for Ativan....I did not fill it! I tried explaining to him that it is the PAIN that causes anxiety.....not ANXIETY causing pain......now....I'm asking myself if this really is all in my head and I'm creating my own torment! Please, if anyone would kindly talk with me.....I would be forever endebted!! Thank you in advance and I hope I can figure out how to find possible replies!

Kathy
Kathy64
Fibre Addict
 
Posts: 13
Topics: 1
Joined: 03 Nov 2016, 10:39
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: I'm new

Postby MidwestJen » 03 Nov 2016, 14:48

Hi Kathy, It's nice to meet you, I wish it was under better circumstances. I have not suffered as long as you but I want to assure you it is not in your head. I posted my story in the "I'm new here section" if you care to know my back story. We have a lot of the same worries....BM, surgery etc. I am wondering if you have to just seen one Dr? Have you been to a CRS?
MidwestJen
Fibre Addict
 
Posts: 6
Topics: 2
Joined: 20 Oct 2016, 16:41
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: I'm new

Postby Kathy64 » 03 Nov 2016, 15:38

Dear Midwest Jen,

I'm so very happy to meet you! We have so much in common! I cried when I saw someone had responded to me. My pain for today has finally subsided until tomorrow...provided I do not have another BM this evening! I was first diagnosed with an anal fissure 20 years ago and was treated non-surgically and it healed. I have spent a large amount of time...years without problems and pain. Every so often I experience flare ups, I guess I reinjure myself and within a few months...the anal fissure seems to heal without much do. Last spring, I became symptomatic again....The pain was intense! I tried everything...sitz baths...OTC creams and ointments...Fiber supplements....I never miss a dose of Miralax for many years now. After suffering with intense pain for two months, I went to see a GI. He prescribed a compounded ointment... L-Pentox/Lido/Nifed ointment. I applied it topically at first because I could not insert the ointment internally by myself and I was not given an applicator. Growing so tired of the intense pain...I degraded myself and sought help from my husband to insert the ointment. My pain has changed since its onset. What was an extremely intense pain during a BM is now a throbbing...aching....spastic pain which lasts anywhere from 6 to 10 hours after a BM. It is life changing....life altering! Like you, I am normally a very anxious person anyway....and working has become more difficult. I fear my next BM....The GI referred me to a surgeon and I saw her last week. She finally preformed a visual inspection....saw the tag and said my anal fissure is posterior. She scheduled me for a fissurectomy with Botox two days ago but after reading testimonials online over last weekend.....I became filled with extreme anxiety and fear and I canceled the procedure. I have to call the surgeon tomorrow and tell her of my fear of the procedure and my desire to remain on this compound ointment for yet another month or two... It is not working....I am tired of crying.....I am tired of the constant pain.....I am filled with anxiety all the time!! No one will tell me how long it should take for the ointment to work...The surgeon mentioned that long term chronic fissures such as mine develop scar tissue and just stop healing....I take Advil during the day to take the edge off the pain and lately, and I hate to admit this....I have been mixing the Advil with Vodka....I will do anything to stop the pain!!! I have repeatedly mentioned to the GI of my severe pain but he will not treat the pain. I left with a script for Ativan along with the referral to the surgeon and was told by him that my anxiety is preventing the fissure from healing....Perhaps I should exercise like you do! I have a treadmill and a spin cycle which I used to use regularly years ago. Not so much anymore! It hurts terribly just to get out of a chair when my pain is acute in the mornings and afternoons!!! BUT OH, it is so good to talk with you! Finally...someone who has been there and knows !!!! Bless you for responding...I sit here right now in tears but it is finally tears of joy and not of pain!!!

Kathy
Kathy64
Fibre Addict
 
Posts: 13
Topics: 1
Joined: 03 Nov 2016, 10:39
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: I'm new

Postby MidwestJen » 03 Nov 2016, 18:13

I wish I could offer more advice as far as pain relief Kathy but I did not try much in that dept other than the ibprophen. I didn't even try the tramidol the ER Dr gave to me because I wanted to be able to function if I actually made it to work. My whole life revolved around the pain. I cancelled plans left and right, finally I jut stopped making any plans. My friends thought I was being a flake. My day didn't start until the pain would go away for the day and that usually wasn't until the evening. That's when I would go for my walks, get errands done, shower, chores, etc. I startwd to drink beer before bed to fall asleep otherwise I would lay awake all night worried what the morning BM would bring, would I miss more work and so on. I was nervous about going to ER and the CRS because I was in so much pain I could not imagine anyone messing around back there. I went to both places as late in the day as I could and took ibprophen before going which I think helped. I feel I was lucky with the CRS I got, she has been doing these surgeries for 25 years, she made me feel comfortable, listened to me, took my concerns very seriously, explain everything thoroughly, answered all 9 million of my questions and so on. I feel like maybe a second opinion from another dr may help, a specialist (CRS). If I had gotten anything but a good vibe from her there is no way I would of had surgery and I now think surgery was my only option for pain relief and getting healed. She made me feel completely at ease (well at ease as much as someone like me can be at) I can't imagine going through this as long as you have. I'm glad to have met you, it's so nice to talk to someone that really understands what this is like. I am single and live alone so no one really saw me at my worst, I'd try to explain to my family or a really good friend of mine and it was so frustrating that they didn't get how horrible and life altering this problem is.
I hope this message finds you still in your pain free part of your day :)
MidwestJen
Fibre Addict
 
Posts: 6
Topics: 2
Joined: 20 Oct 2016, 16:41
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: I'm new

Postby Kathy64 » 04 Nov 2016, 06:46

Oh my gosh!!! You just get it!! I just got out of bed and like every morning, I'm sitting here with my morning coffee scared to death dreading the am BM....How much pain will I have today. I dread every piece of food I put into my mouth because I know it eventually comes out! I refuse to go anywhere extra...I will not eat out anymore! I do not enjoy long car rides anymore....My pain does subside like yours....in the evening and although I do look forward to my precious hours without pain, my mind is focused mostly on the next morning! I'm thinking of taking time off my job...Oh my gosh...we both even have female surgeons. I know I will eventually have the surgery but I am so very scared!!! Most of my years have been pain free and no one told me this would become chronic and non-healable. Are you truly healed? And pain free since your surgery? I felt so bad for you when I read your story yet I could relate so well! I can not control my anxiety.....and will more than likely be sitting in the hospital parking lot refusing to go in if that day comes but I can not picture life like this with no pain relief in sight. This is a living nightmare....I mentioned to my husband yesterday how bad my day was and I truly believe he did not want to come home from work. I have a concert tonight with him....I'm dreading it! I'm dreading the whole entire day! I pray I have no BM today so I have a resemblance of a somewhat normal day...... Bless you so much!!! you give me hope again!! A very tiny glimmer of hope

Kathy
Kathy64
Fibre Addict
 
Posts: 13
Topics: 1
Joined: 03 Nov 2016, 10:39
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: I'm new

Postby Mypoorbutt » 04 Nov 2016, 07:37

Hi Kathy,
I'm sorry to hear your suffering so much, these fissures are horrendous both physically and mentally.
I had the Botox and fissurotomy in June this year and although it didn't heal me ( it wasn't meant to) it did give me weeks and weeks of very little to no pain.
Like you before the Botox I could be in pain for up to 10 hours with spasms that would literally make me consider ending it. After the Botox from the next day there was no spasms and from week 2 the pain significantly decreased I was only in slight discomfort for 20 mins after a BM and could carry on with my day pain free.
So please rearrange the surgery no one can or should carry on in this amount of pain, it changes who we are so we have to fight back any way we can.
I'm due to have LIS on Tuesday and even though my fissure is a lot better and the spasms have gone...I still have the burning as it's not completely healed and when my IBS plays up the fissure opens more and the spasms come back.
I have had this for 18 months and in the beginning it made me very angry and slightly bitter that everyone else I know can eat and poop normally. I am now malnourished as I have only eaten bread and protein for 18 months. I will never return to eating how I did. But I also refuse to let this dominate my life and thoughts (easy to say with no spasms) I go out with friends and they eat and drink and I just have a cup of tea....I go to the cinema with my daughter and take two cushions. Please I know how agonising this is nothing I have had (kidney stones dislocated joints crohns IBS) comes anywhere near the soul destroying pain of ten hours of spasms, but it will get better it has too...talk to your surgeon see what they say.
Hugs
Mypoorbutt
Moderator
 
Posts: 1870
Topics: 19
Joined: 25 Nov 2015, 14:10
Has thanked: 16 times
Been thanked: 205 times
Gender: Female

Re: I'm new

Postby MidwestJen » 04 Nov 2016, 08:36

Another thing in common, I love going to concerts!! I will tell you about my post surgery experience....I had to wear a pad for about a week because I bled a little but nothing bad at all. I had a panic attack before my first BM but that went perfectly fine. The pain after surgery was NOTHING like before surgery. I was off of work one week and haven't missed a day since. The first 2 days was the worst and even that didn't compare to what I went through before it. The first 2 days I had the pain following my BM that was intense but only lasted and hour maybe two. I am not completely pain free yet but from the 3rd day after surgery until today I get a very slight, very brief (like 2-5 min) of very mild pain after my BM. So mild that I don't have to lay down, I just go about my morning getting ready for work. After sitting all day at work I sometimes feel soreness down there in the afternoon but that's it!! I have even kept plans for breakfast since my surgery!! I never thought that would be possible again! My life pain wise and socially, now compared to before surgery is like night and day. At my follow up appointment on Monday my CRS says it looks good but I am not healed completely yet(next follow up is Dec 5th) and that's why I still have a little pain. The surgery has brought me hope that I will get passed this and when I am completely healed I will be back to my old life. Exercising absolutely helps me with my anxiety. I have never been on medication for it, I've always just dealt with it the best I can. About 5 years ago my anxiety was so bad I didn't leave my apartment for months, my mom and sister would do my grocery shopping for me and everything. Exercise and getting out and having an active life (until my butt probs) have turned my life around in that dept. Keeping my mind focused on things other than my fears and worries is the key for me....when I have nothing going on and I am home, I even color... like in a coloring book like a little kid lol....anything to keep my mind busy. I still have awful anxiety but at least I am functioning unlike 5 years ago. I felt I would throw that in to let you know your not alone with the anxiety thing either. As mentally traumatic as the whole surgery was for me, I would do it all over again. I still fear my BM's every morning, I eat pretty much the same thing every single day because I'm scared to change anything for fear of what it will do to my BM. I am still scared I will have to go when I am not at home....My purse contains baby wipes and butt cream just in case (feels like a diaper bag lol). I have OCD about doing my sitz baths cause I feel the need to keep it extremely clean. Its almost like I have ptsd from the whole experience. I even have had couple dreams about surgery. It's crazy how our minds can just take over. Feel free to ask me anything about anything lol. Kathy I hope you have a good Friday and are able to enjoy the concert with your husband :)
MidwestJen
Fibre Addict
 
Posts: 6
Topics: 2
Joined: 20 Oct 2016, 16:41
Has thanked: 0 time
Been thanked: 0 time
Gender: None specified

Re: I'm new

Postby Kathy64 » 04 Nov 2016, 09:14

Dear friends

Oh thank you so much for your reply! I'm so scared to have the surgery but I know I will have to soon! It is so good to hear someone say something positive post op! I would eventually love to be pain free! Is it even possible anymore? Please keep in touch and let me know how your LIS turns out! I will keep you in my thoughts and prayers! So far, this morning...no BM and I'm so thankful but I have this concert tonight with my husband and I have really caused stress in everyone's life. I feel so badly for my family!! I so want to enjoy this evening for a change.... I'm considering not eating for the rest of the day! This is horrendous! Thank you so much for your hug!!! I felt it...I REALLY DID!!

Thank you so much for sharing your post op experience with me Midwest Jen....I will call the surgeon today but will probably postpone now till after Thanksgiving. I know...I know.....I'm searching for excuses to avoid the surgery! I think you can experience PTSD from all of this! No BM yet...I had such a horrific day yesterday that I figured this was a possibility! I so want to have a good time tonight....i have decided not to eat anything else for the rest of the day. I had fiber enriched instant oatmeal this morning....I have considered doing sitz baths again but last spring when this all reoccurred again...my sitz baths caused such horrendous throbbing immediately following....I'm scared to try that again....I have only showered ever since. You both have helped me mentally so very very much! I am smiling right now and its been so long since I have truly smiled!!!! Hugs to you Midwest Jen! Big Big Hugs to you both!!

Kathy
Kathy64
Fibre Addict
 
Posts: 13
Topics: 1
Joined: 03 Nov 2016, 10:39
Has thanked: 0 time
Been thanked: 1 time
Gender: None specified

Re: I'm new

Postby Mypoorbutt » 04 Nov 2016, 14:23

Hi Kathy,
Hope you have a good time at the concert.
I can totally relate to you with the eating I often go a day or two without food as it's the only way to be sure that I'm not in pain...having IBS makes a fissure harder as there is never any predictability about when or how often you will go to the toilet. Which in itself is hard let alone the added agony of the fissure. I have lost 4 stone since this started. I know that I'm not eating for 10 days after tomorrow as I am so very scared of being put to sleep that my IBS will go into over drive.
Are you scared of surgery or being put to sleep...I cannot describe how frightened being put to sleep makes me...I was on the operating table and they had to take me out for 5 mins because my heart rate was too fast because I was nearly having a panic attack. I know I will do this again on Tuesday but I know I need this surgery...no one can life with this pain.
I do not know if I will ever be pain free as my other conditions make me go so often I'm not sure pain free is possible but thanks to the Botox I know I can be a lot better who minds 20 mins of discomfort, especially when compared to spasms
There is never a good time I contemplated making mine after Xmas but am hoping a month from now I will be at least ok if not good....it's so hard for women as we have to take into account everyone else's feelings and needs.
Hugs
Mypoorbutt
Moderator
 
Posts: 1870
Topics: 19
Joined: 25 Nov 2015, 14:10
Has thanked: 16 times
Been thanked: 205 times
Gender: Female

Re: I'm new

Postby JMG » 05 Nov 2016, 03:47

Hey Kathy I know I put a reply to your reply to my newbie thread (ty again for replying, btw!) but just wanted to say again that I'm sorry you've had to deal with the pain of this as well, let alone for such a long time. I can't even imagine how that would be. Makes my 8+ months dealing with it seem like nothing by comparison, and it has NOT felt like a small amount of time at all. This really does seem to be a great site with lots of members who really understand what it is like to go through these kinds of things. I feel such relief when I see others say how they worry about when they have to "go" again, it has def. been like that for me as well. Not a thing that people in everyday life talk about though, nor do they seem to want to hear it which I try to be understanding about but omg it's truly always on my mind. Anyway I hope you will consider rebooking the appt cos it sounds like it is needed if you are having that much pain.
User avatar
JMG
Fibre Addict
 
Posts: 6
Topics: 1
Joined: 03 Nov 2016, 04:50
Has thanked: 4 times
Been thanked: 0 time
Gender: Female


  • Similar Topics
    Replies
    Views
    Last post

Return to New to the forum? Introduce yourself here



Who is online

Users browsing this forum: No registered users and 0 guests