My journey: will it ever end?

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My journey: will it ever end?

Postby leahsand » 23 Jan 2022, 19:09

I've been stalking this forum for years and only now decided to create an account to participate. I'm hoping maybe keeping a diary will help me keep my sanity, considering these past few years have not been ideal.

I have always suffered from constipation, even as a baby. My parents, who were both well-versed in the art of not pooping, thought nothing of it. Neither of them has dealt with hemorrhoids or fissures despite their constipation problems, and they've both found that with age their BMs come more naturally. Now that they're old, they don't struggle as much.

However, I am not like them. In 2016, when I was 17, after the worst year ever, I developed a thrombosed hem that needed surgery. I was lucky enough to have a great doctor that helped me through it, but then I got a fissure. The fissure would NOT go away no matter what I tried, and even though my doctor was great all he told me was to keep drinking water, not strain, and put an ointment up there called "Lupan". The pain wasn't HORRIBLE, but it was so depressing and debilitating that I sort of developed anxiety and what I now refer to as a soft case of bathroom PTSD. Finally, in 2017, I went to a different doctor who got me started on an osmotic laxative called Poly 3350. It was AMAZING. For the first time in months I was able to poop semi-regularly (so, every other day) and heal my fissure! It was a lifesaver. It was everything I had been looking for my entire life and more.

I kept taking this laxative through 2017, 2018 and 2019 (sometimes 1 packet every two days, sometimes half a packet every day, sometimes if my stress levels were too high one full packet a day). I would maybe have 1 flare-up a year, maybe a little blood, but nothing too crazy. My doctors assured me it was fine and that it wasn't risky to be taking this long-term since it's not a stimulant and it doesn't interfere with nutrient absorption. Then the pandemic came, and I went through the worst depression ever, which had an impact on my BMs. I could barely get out of bed, let alone drink water.

Because of this, my fissure re-opened. Or so I thought. I went to see a doctor in December 2021 and it was the worst experience of my life. He performed a rectal exam without any sort of... dialogue? preparation? I now know I have issues with my Pelvic Floor, which means my muscles are too tight and this causes me lots of problems. This man basically shoved his finger up there without saying a word and treated me horribly when I said he was hurting me. He then proceeded to tell me I have all sorts of issues (internal and external hems) but a fissure isn't one, that he could see. He kept telling me he couldn't be sure, since I was making such a fuss, so the rectal exam was useless anyways. This diagnosis confused me. I thought external hems were supposed to hurt? Mine didn't hurt. As for the internal ones, I suspected I had one because I would sometimes bleed without the pain I had always related to my fissure. He gave me a cream (Anusol) and some pills (Daflon), which I had to stop taking bc they made me so sick I couldn't keep food down.

Now, in 2022 I finally made the effort to get my health under control again, and I've been trying to get a diagnosis for my constipation. It seems I need some Pelvic Floor Therapy, because the muscles down there are so tight I simply can't go normally. Not gonna lie, I'm pretty scared of it, because the last time I went to see a procto it was a horrible, traumatizing experience so I'm scared it'll be like that again.

I live in a country where the salaries are pretty low, and this osmotic laxative that I take is very expensive. Even with insurance paying for almost half of the full price, I'm scared I won't be able to afford it for long. Miralax isn't available without a prescription here. Tbh, there aren't many options here when it comes to laxatives. What you can buy over the counter is not for long-term use.

Many people have told me that it's crazy to be my age and be so reliant on laxatives (even though, once again, my doctors have all said it's fine) but... I simply can't stop taking them. Diet isn't my issue (I don't eat meat, I drink 2lts of water a day, I eat veggies and all the good things, I've cut out coffee and alcohol), even though it obviously helps. It makes me angry that I'm young but I can't do things so many other people my age can without worrying so much about my body and my ass. Like, I'd love to move abroad, but I have to think very carefully about how I'm going to get my medication sorted out. I'm angry and sad and tired of worrying about my ass. I would like to not be anxious about how or when or where I'm going to poop.

I'm also scared that I'll need another surgery for my hems (rn I'm not in pain and I haven't bled in a while). I've already had surgery in 2016... how many times can you have surgery in one place? I imagine the muscle can't be constantly operated on. It's stupid, because I know I'm stressing myself out even though right now I'm not in pain but I keep thinking... what if this is something that comes back every five years? Am I supposed to get surgery every five years for the rest of my life?

I know this is a crazy long, personal post, but... Do any of you feel this way? Like your life will always revolve around this issue? It keeps coming back, and from what I've read on other people's posts... it keeps coming back for them too. No matter what, even after years of no pain, it COMES BACK. I'm so depressed about this, so angry. I wish I could be more positive but I'm tired. I'm also angry that my ass looks the way it does lol. It's silly, but it does make me self-conscious that I have these piles/skin tags from the fissure.

I'm hoping PFT will help with my constipation issues. I really don't have any other ideas.
leahsand
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Re: My journey: will it ever end?

Postby patience_and_healing » 24 Jan 2022, 23:26

I think the pelvic floor therapy will be very helpful for your bowel issues, especially if biofeedback is used. Biofeedback trains your body to respond to cues it may not have recognized earlier. Sometimes constipation can also result from less sensitivity in the area that should signal for a BM. The pelvic floor therapist might be able to help with that too. I hope you find a physical therapist who will be your advocate and knows how to treat you.

Don't lose hope. I also struggle with pelvic floor problems and may be heading for another round of Botox. It's a difficult journey for sure, and you need to stay hopeful.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
On and off in pelvic physical therapy
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