Constipation Isn't Funny: My goal of writing this... - LUPUS UK

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Constipation Isn't Funny

candy176 profile image
11 Replies

My goal of writing this post is expressing to readers why you shouldn't use the word "constipation" as a joke, and to enlighten the public about the horrors of constipation, starting with:

1. Everyone thinks that it's funny when they imagine someone making an angry face on a toilet seat, but that means that you haven't been that person. A lot of people experience constipation, and chances are that, every time you use the word incorrectly, there is someone that is secretly hurt, or embarrassed, or offended, but too ashamed to tell you why. They deny the fact that they ever had constipation, but secretly they're very affected.

2. Let me tell you MY story. When I was 7, I was told that I was allergic to fruit, and I couldn't eat it anymore. I was eating it all the time, and suddenly my diet was horribly restricted. I was sad and stopped eating fruit. I didn't realize that my fiber was declining. I started to get constipation. I got blood in my poop, and told my mom. She tried all kinds of unsuccessful things. It got worse. I got an anus fissure--a cut in my butt. It wouldn't go away, as it kept getting irritated. Eight years later, it's still there.

The pain was terrible. I would scream, thrashing on the toilet for ten or fifteen minutes, with my mother there trying to calm me down. I would cry, and afterwards I wouldn't be able to walk because of the pain. I would curl into the fetal position, though even THAT hurt, and I would lie there for a very long time. Finally, we found this thing that looked like, had the consistency of, and tasted like a kind of thick cooking oil. I would put it in my drinks, or sometimes plain in a cup, and I would drink it. Imagine eating raw egg--it was sort of like that, and I had to drink it every night. But the constipation stopped, so I didn't care anymore. I gladly drank it every night, and was grateful for it, even though it made me gag sometimes, and I felt disgusting afterwards.

Then, my mother found MiriLax. It's a kind of powder, and I would let it dissolve in grape juice and drink it every night--which I still do. I'm so grateful for it. I get scared to go even one night without it. If we go on vacation and I realize I forgot it, I begin to get very, very scared, and my parents have to buy me more or find something fiber-infested to get me to stop "uselessly obsessing." They don't realize the terrible fear that I used to have of pooping, how I'd hold it in even when it started to damage my intestines, how I began to get terrified of going to the bathroom, how I'd avoid it at all costs. How, even now, eight years later, those old memories still traumatize me.

Still think the word is funny, when to some people it means the darkness in their life, the ruining of their adolescence?

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candy176 profile image
candy176
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11 Replies
amandalilley profile image
amandalilley

You have my empathy and acknowledgement that this is an awful thing to experience. Your courage to express this subject is fantastic. Go you.

I have experienced the same fear and now with every attack that requires the dreaded extra pain relief that can cause constipation, I make sure my supply of sodium dolcusate is added to my med list.

I am so sorry that you have experienced such negativity and hope that by writing your experiences here you will see that others are willing to talk and offer help, advice and support and also help spread the message that constipation is no funny talking point.

Sending you love and hugs for tiday, tomorrow and all future days. X

in reply toamandalilley

I have found that aloe vera oil taken in juice is very effective.

You are very brave bringing up this subject and I am so sorry that you had to suffer so much.

Hugs from me as well xx

candy176 profile image
candy176 in reply toamandalilley

Thanks :)

EOLHPC profile image
EOLHPC

Well said! I'm TOTALLY with you!🌟👍👏👏👏👏

Candy, I'm SO GLAD you've found a good way to manage this: well done to both you & your ma!

Thanks vvvvvv much for telling us your story and how you feel about all this!

I share your passion: my feelings on this subject have developed partly due to my early onset ehlers danlos hypermobility-caused anal prolapse + piles which had to be operated in my early 30s after 10 years of agony & fear (BMs were torture...I'd never been "constipated" but living with prolapse+piles tempted me to never pass a motion again except I feared the results of constipation just as much). I've also spent my 62 years managing chronic upper GI problems...and at the mo I'm being treated by a brilliant NHS women's services specialist physio who is teaching me great techniques for managing what she calls small intestine constipation....these techniques are actually working for me, only 2 weeks in to treatment. Candy, I'm not sure how well you & your Drs understand the sources of your GI problems & why you can't eat fruit...and I don't know whether investigations are underway, but, even so, perhaps meeting this type of physio might be helpful to you...I would think your GP or gastroenterologist could refer you

also, my passion on this subject has developed due to experiences caring for my early onset crohns husband's constipation issues....like you his life has been coloured by constipation (& diarrhoea) from childhood. This has well & truly taught me how vital it is to manage any tendency for food not to be able to move efficiently through your gastric system. He had already been through several major bowel resection ops by his late 20s when we met. As a result he had to live with a long bowel stricture where his ileocecal valve should've been (the valve between the upper & lower valve). What can't go down, goes up: imagine that? I know people who have actually experienced this. So far my husband has avoided this because he manages his GI system ultra conscientiously, but both the life threatening effects of blockage + the horror of his system backing up & out do loom over him daily. Because of his crohns & stricture he cannot eat any fibre at all. I jokingly say he eats like an Eskimo: fat & meat. It's a miracle, but at 61 his crohns is finally in remission, he is off daily steroids & has spent the past 5 years of his early retirement solo planting a 37 acre native wood. He is fit, and manages his health conscientiously....people think his crohns is all about daily diarrhoea, but constipation is just as much of a daily issue! Apologies for going on at such length about non-lupus stuff, but crohns is another autoimmune condition, and some of us here have it as a secondary

just in case some day this could be useful to you, candy, or others, the daily anti-diarrhea bulking prescription med he has taken for decades is: Questran. His feeling is that questran also helps prevent constipation due to his stricture meaning he cannot eat roughage.

Also here is a link to the website of a really really up to date & official international organisation dedicated to helping patients with gastro issues including constipation:

iffgd.org

🍀🍀🍀🍀😘 coco

candy176 profile image
candy176 in reply toEOLHPC

Thanks! Is it a pill?

EOLHPC profile image
EOLHPC in reply tocandy176

Questran is a prescrition medication. It comes as a powder in a sachet. It's also used for other conditions (inc high cholesterol). in my husband's case it's prescribed alongside daily loperamide for diarrhoea, BUT his feeling is that questran also helps prevent constipation because it bulks up his motions by replacing the roughage he cannot eat (ie no veg, no fruit, no herbs & spices).

My feeling is that your Dr needs to discover the cause/s underlying your gastro problems so that they can be treated & managed appropriately.

Am wishing you all the best

🍀🍀😘 coco

Cal66 profile image
Cal66

Hi

Well put Candy & a brave subject to write about for one so young,. You have certainly had it really bad, but at least you have found something that helps you.

I also suffer from constipation, as I take Tramadol & Paracetamol, 4 times a day. As I have that many food allergies including whole meal or high fibre foods & certain fruit & vegetables, including medication containing Senna. I therefore get very constipatedI & it causes a blockage, this then causes my Hiatus Hernia to flair up & makes me violently sick. If I take my anti sickness tablets this causes the constipation to worsen and so I either put up with the sickness and hope that the constipation goes away or take the anti sickness medication & put up with the constipation, though now having read about different things that everyone who replied to you mentioned I am thinking of trying them to see if they will help me, so thank you for writing about an embarrassing subject.

Kaspinallsgr8 profile image
Kaspinallsgr8

Hi your letter drew my attention because for the past few years I have suffered off and on with constipation interspersed with bouts of diarrhoea due to having IBS. Though I feel sympathetic to your not liking constipation as a funny subject, sometimes I deal with this horrible problem by making jokes about it to try and relieve the misery that the suffering brings me and other times I just crawl in bed and hide. If it bothers you to have people joke about it just let them know to be more considerate to you. Everyone deals with problems like this in their own way, one that helps them tolerate their suffering. Some laugh at it and others can not but either is ok.

You say you are allergic to fruit. I'm wondering if it's all fruit?

I'd like to make some suggestions to help deal with this problem. First of course is keep up your water consumption. Try increasing your intake of high fibre vegetables (check on the Internet to find which would be best) and oatmeal, they are very helpful. Also there are other supplements that you might try that other sufferers recommend. Olive oil that can be taken by the tablespoon or consumed on vegetables with some seasoning if you don't like the taste by itself is one source and another is cod liver oil which can be taken by spoonfuls or in capsule form. This doesn't always work but it does for many people. I use these methods because I cannot take the fibre supplements that are often prescribed by doctors as the give me bowel pain. A bonus if they work for you is the vegetables, oatmeal and olive oil are easy to get, taste better and are cheaper than fibre supplements. If no one has told you about this option see if you can get a referral to the healthy bowel clinic maybe they can give you some help. Anyway I wish you good health and better days ahead.

candy176 profile image
candy176 in reply toKaspinallsgr8

Thanks! But, what I was mainly targeting is the misuse of the word that twists it into something that is not about what it is, like, "That's so constipated!" and "You look so constipated!"

candy176 profile image
candy176 in reply toKaspinallsgr8

And I have oral allergy syndrome--so, while I'm allergic to many fruits, I can still eat some, like strawberries and raspberries and blackberries--but not blueberries, apples, peaches, plums, cherries, etc.

jacrjacr profile image
jacrjacr

I have miralax but it says not to use daily....what did your dr say......I know how you feel

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