new to forums - could really use support

feeling lost and scared

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new to forums - could really use support

Postby ruchgupt » 10 Jun 2023, 16:37

Hi everyone,

I have to say, this forum even as a lurker has been a godsend. I feel so alone and scared - I suffer from major depressive disorder and this issue has made life increasingly dark and daunting for me.

So, as for my story -

I’ve had blood in the bowl off and on for the last 4 years. UsuallY very sporadic, and no pain. I thought, probably hemorrhoids and wrote it off as self-healing. I’ve also pretty much always had bad habits on the toilet - eating low fiber and alternating between constipation/straining and going TOO much (I’m usually a 2-4x time of person)

Then this last year the pain started with the blood. But again, it was sporadic enough that I tried to treat at home w Tucks and preparation H. It wasn’t until I was SCREAMING in agony on night after BM for hours after that I went to urgent care and she did w (VERY PAINFUL) anoscopy and diagnosed me w external hemorrhoids and an anal tear that she said looked like it had been around for awhile. She gave me hydrocortisone pramoxine and said to find a GI specialist.

I immediately began to take care on the toilet and up my water intake to 2L a day, and over a week, healed enough for BMs not to hurt anymore. Then I went to the GI doc - who wasn’t very nice - and got an anoscopy (which didn’t hurt as much this time!) and he basically said the external hemorrhoids were small and normal and what we needed to heal was the fissure. He said it didn’t need surgery yet but he did prescribe me nitroglycerin and said I needed to make sure not to retear it.

Well. Cue a day later when a bigger BM (not even hard - just big!) retore me. At least I think it did, as the pain was intense and I saw blood both streaked on my stool and some on my toilet paper after a week and a half of no blood.

It’s now been three days of the nitroglycerin and while it certainly helps the pain and I haven’t seen blood in the last few days, I’m not sure I’ll EVER get the magic right enough to ensure not retearing and setting back in progress. I keep a food and poo diary and I can’t seem to find patterns yet to lead to and keep the perfect poo consistency - some days it’s great and other days doing mostly the same thing it’s too frequent, or too large. I just don’t know.

I’ve been off of work on PTO during this whole debacle and have to go back (remotely) on Monday and I’m just scared and tired already.

I guess I need encouragement - that it’s okay to be feeling this out blindly and that even if you set your progress back you can reheal.

I’m trying to find a new GI specialist as I think more info on my fissure (aka where, how many, how deep) will be helpful (altho I dread another anoscopy)

Thanks everyone for listening!
ruchgupt
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Re: new to forums - could really use support

Postby dmcff » 11 Jun 2023, 05:14

Hi and welcome to the forum. First of all, you should not be seeing a gastroenterologist (GI) for anal fissure - you need to see a qualified colorectal surgeon (CRS). Second - don't go in for anoscopy or colonoscopy scans, as they are likely to aggravate the fissure. GTN cream or ointment can be a good short term therapy, but you may find that what you really need is pain management - again, see a trained CRS. NB I am not a doctor. Good luck with your treatment, and do keep us updated on your progress.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Onward, up
2024 CT scan
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Re: new to forums - could really use support

Postby ruchgupt » 11 Jun 2023, 07:50

Hi dcmff - I do have a CRS appt but in my state, it can take aaaages to get in to see someone. Mine isn't until August; I am trying valiantly to get in sooner with someone though. One question - how will the CRS diagnose for himself what I have without anoscopy? I'm told my tear is inside rather than outside and easily visible, but I suppose a digital rectal exam might be possible? I'm fairly sure this last bout of pain and bleeding happened bc the anoscopy aggravated things back there. Also, what methods of pain management are you thinking beside GTN cream? I'm reallly trying to get my BMs right as I think that's what will help me ultimately, but man - with an eating disorder and now healthy fear of food, it's been hard! I'm typing this while waiting anxiously for my morning movement, in fact lol. THANK you for your advice and support!
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Re: new to forums - could really use support

Postby dmcff » 11 Jun 2023, 08:44

A very gentle digital rectal exam might do the trick - or there is always a CT scan. Just try to avoid invasive procedures like anoscopy and colonoscopy, which should really have no place in AF diagnosis.

For pain management, the relaxing effect of an anticonvulsant, pregabalin, has been very helpful to me. Other posters here have reported beneficial effects from gabapentin, another anticonvulsant.

Good luck with your morning movement - mine has moved to the afternoon. :lol:
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Onward, up
2024 CT scan
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Re: new to forums - could really use support

Postby ruchgupt » 12 Jun 2023, 18:46

As an update - yesterday and today’s movements retore me :/ I think I’ve got too much fiber in my diet but I’m quite worried about branching out to other foods and constipating myself. I guess being constipated is better than forcing out giant stools lol. Ugh. How do people deal with the day by day nature of this - and the feeling of setbacks?!
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Re: new to forums - could really use support

Postby AF3 » 13 Jun 2023, 04:59

Hi ruchgupt,

Welcome the forum! Echoing what dmcff said, hope you are able to see a CRS soon. You could try @yourfriendlyproxtologist’s YouTube channel for a lot of really helpful information. He’s a CRS based in CA.

Fiber can be tricky, a lot of people here take Movicol (think it’s called Miralax in the US). It’s an osmotic stool softener which has worked very well for me. Others have found fybrogel worker better for them.

Maybe you are doing this already, but deep breathing (from the belly) during a bowel movement helps as well as no straining. Sounds like you are on the right track with the 2L of water. I’ve found that for me, that’s always the clincher.

Hope some of this helps and that you manage to get an appointment soon with your CRS.
AF3
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Re: new to forums - could really use support

Postby dmcff » 13 Jun 2023, 05:36

Re the subject of Miralax/Movicol - in the U.S. Miralax is sold in a bottle with a cap, whereas in the U.K. Movicol is sold in sachet form, by the boxful. It's a completely different marketing method that makes it rather hard to follow the advice given in videos like those of Dr. Chung, e.g. https://www.youtube.com/watch?v=Fj288M-CVk0 - where the cap is the standard unit of measurement.

I'm not sure what the best solution to this difficulty may be.
2014 Anal fissure
2015 CAT, EUA, sigmoidoscopy, 2 MRI
2016 Pain severe then moderate to low
2017 Moderate pain
2018 Physical therapy, pain management
2019-20 Living with it
2021 Still AF
2022 Therapy, meditation
2023 Onward, up
2024 CT scan
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Re: new to forums - could really use support

Postby Hazey123 » 13 Jun 2023, 05:48

Hi Ruchgupt
It’s all very hard to get right. One day same diet same meds totally different BM from another day! I spent a lot of time on fibogel and that made my stool too bulky and it hurt like hell. I find Movicol is perfect. I’m in a lot less pain with this. Plus loads of Vaseline prior to BM. And deep breathing as AF3 suggests this is very helpful. I am dilating twice a day and I can really tell now how beneficial breathing is for relaxing your sphincter muscles. I literally can’t get the dilator in without deep breathing holding and very slow exhale. So when I go to the loo I always do the deep breath in and slow exhale as it comes out. I think it helps. I’m in way less pain now, altho far from healed. We are all here feeling your pain. It’s actually quite a common ailment. I just think no one talks about it. Also I find I feel good for a couple days then have a painful day am devastated but then another better day quite quickly after. This cycle continues while healing. So a painful BM is not necessarily back to square 1 you have to just pick yourself up and stay on your regime. It has to heal eventually!! Our bodies WANT to heal
AF following skin tag surgery Feb 2022
GTN ointment
sigmoidoscopy & EUA Sept 2022 no fissure found
2nd opinion Jan 2023 fissure diagnosed, diltiazem - allergic
recommended Botox Fissurectomy
3rd opinion - dilation 2x per day plus GTN ….
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Re: new to forums - could really use support

Postby AF3 » 13 Jun 2023, 05:55

Hazy123,

You said it perfectly - same food same meds, different BM; feeling devastated after a bad day; knowing that it’s not necessarily square 1 and knowing that our bodies are always trying to heal - my experience in a nutshell.

Although it’s not a nice thing, it’s always ‘comforting’ to know that you aren’t going through this by yourself. I for one am 1-1 going through what you are. It may take time, but we will heal.
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Re: new to forums - could really use support

Postby Hazey123 » 13 Jun 2023, 06:02

Amen to that AF3:)) thank goodness for this forum it has saved my sanity! Xx
AF following skin tag surgery Feb 2022
GTN ointment
sigmoidoscopy & EUA Sept 2022 no fissure found
2nd opinion Jan 2023 fissure diagnosed, diltiazem - allergic
recommended Botox Fissurectomy
3rd opinion - dilation 2x per day plus GTN ….
Hazey123
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