Just wanted to share our story in case it helps anyone, we're in Leicester, England. Sorry it's a bit of a long one!!
My little Toby was born at 16:17 on 17th June 2016, he was a healthy 8lb 9oz ☺️ he fed well over night and was very quiet and laid back.
At 9:30 the next morning he was sick green bile and immediately rushed to special care for an X-ray with a suspected blockage, which it confirmed!
We we transferred to the Leicester Royal Childens ward where we stayed for a week, he was tested for Hirschsprung's but the results took 3 weeks so we were taught how to do washouts and sent home whilst we waited for the call. When it was confirmed I was devastated and then scared myself to death reading horror stories on line! I put a plea out on fb to all my friends to see if anyone had any experience with HD, low and behold I was introduced to 3 people who I asked lots of questions which helped me understand what my tiny baby would go through in life!
On 4th August, the day I was dreading, he had his pull through operation. Nearly 7 hours away from the ward it was over, he had 20cm removed and went as well as expected.
He did his first poo 15 hours post op and was feeding well and we were discharged 3 days after.
The first 12 days were fantastic, he was pooing for England, then on day 13 he was blowing up with air just like before the op. We had to start dilations to stretch the scar tissue which help him pass the air.
Since then we've had one more trip to the hospital, he is breastfed and would only poo once a week so he's been prescribed suppositories to make sure he goes everyday, also we do sometimes have to pass a catheter to release his air when he struggles or stimulate him to push the poo out.
Despite all this little one has been through he's such a happy, cubby baby who amazes me each day!
My son Levi was born on Friday June 20, 2014 by planned section. My ex husband has a daughter who was born with TCHD so we knew that there was some chance of our child having it but he had two non HD sons after her so we figured the chance was small. Well I knew pretty much immediately that something was wrong with our lil guy. He looked swelled by his first evening and he completely refused to nurse. By the next morning (Saturday) he was throwing up stomach bile. The nurses kept insisting that he was fine. By that evening still had no poop and the vomiting was getting worse! I begged the nurse that night to check him out and to send him to our state children's hospital. She agreed to check him out well and took him to the nursery. About an hour later she came in and told us that he couldn't leave the nursery but we were welcome to come in. She said she had tried to put a tube down his nose and it wouldn't go down and she thought he had an upper blockage. We told her "no it's HD" she told us (after googling HD) that it couldn't be that because it was so rare and not genetic so the odds of my husband having two children with it would be astronomical! Turns out she couldn't get it down because of a deviated septum! It saved his life! The next morning (Sunday 2days old) he was airlifted two hours away to our children's hospital. He stopped breathing on the way from the pressure in his gut but they got him going again! I made them release me and followed. For two days they ran test after test. They did a barium test and they told us that he didn't have HD only a small intestinal blockage. So he went in for surgery the next day at four days old! It took six hours! Afterwards they came out and told us that he did have HD and his whole colon was affected plus around half of his small. They had placed an ileostomy. After that Levi didn't wanna eat so our total stay was a lil over six weeks! He came home with an ng feeding tube. We trucked along fairly well for a year. Then he started passing mucus from his bottom fairly regularly. During these times he got very sick! After months of me explaining the symptoms they finally realized that the colon that had been left inside was causing entercolitis! So we did irrigations at the first signs of trouble and moved along until he was two. At this point my son only weighed 18 pounds and they started to worry about brain development being stunted if he didn't start getting more calories. July of this year I agreed to surgery for a gtube and to remove the colon! He had his surgery July 31st and he didn't recover well. We spent over a week in the hospital. But he started improving. Gained over three pounds quickly with night tube feeds. His incision kept swelling up and busting open tho over and over. A couple weeks ago he started screaming in the middle of the night! I couldn't console him. Took him to the local er and he was transferred to children's hospital. He was admitted to the PICU and tests were ran. He was in so much pain and was running high fever! This was a Friday night. Sunday one surgeon told us he was being moved to a reg room and that she thought he was fine! Thank the good lord for a stubborn nurse! She called in a chief surgeon he took one look at my baby boy and rushed him to surgery! When they opened him puss poured from his lil belly! The surgeon who removed the colon had left a piece inside. It built up bacteria and exploded inside him! They had to remove another part of his good intestine and even move his stoma to the other side. Levi came out of surgery on a ventilator and on high doses of meds to sedate him. He also got high doses of antibiotics! They blowed every vein in my poor baby's arms and legs and finally put in a picc line! He slowly improved. He did without food or drink for seven days! He wasn't even on tpn! He lost all the weight he gained! We finally got to come home after 10 days and tomorrow will be a week that we have been HOME! He's doing pretty good so far! Although I'm having a heck of a time keeping bags on him due to the incision (he got a big cut this time)! Thank you all for taking time to read our story! Before the gtube and removing the colon I had already decided that I would not be trying to do a reversal. They tried with my stepdaughter and had to go back to ileo. I'm not going to put my son thru all that when they can't guarantee a good outcome! I did have them leave enuff colon right at the rectum tho so that if my son one day decides to try he can! If anyone has questions that I can help with feel free to message me! Good luck with all your HD babies!
TOXIC COLON: ROOT OF ALL DISEASES! 5 SIGNS THAT YOUR COLON IS UNHEALTHY AND 5 THINGS YOU CAN DO ABOUT IT
email@example.com | November 30, 2015 |
The colon can accumulate toxins and become clogged due to various undigested foods. A clogged colon can make sick the whole body and there are signs it sends to show the colon needs cleansing.
Here are some of the most important signs that the colon needs cleaning:
1. Body scent
Your body sends you signs when detox is needed, such as bad breath, bad body odor and the feeling of bloating. Bloating and gas occur when the colon is full with fermenting materials. After a detox, you will feel fresh, energetic and with you’ll smell better.
Toxins from the deposits that obstruct the walls of your intestines get in the blood and the lymphatic system. Fatigue is caused by the toxins present in the blood and the only solution to feel better is to cleanse the colon. The immune system is weakened because of the fight with the bacteria and fungi that grow on these deposits in the intestines.
Stress, unhealthy diet, drugs, chemicals or other sources of food can cause constipation. These factors increase the amount of mucus in the colon, which tries to prevent harmful substances. The chemicals from the food and the processed food leftovers together with the mucus thicken colon’s walls. This makes faeces not able to get to the exit.
Only a helpful detox can help you with constipation and remove hurtful toxins from intestines.
Headaches, back and sciatic pain are results from a clogged and obstructed colon. These pains are triggered by the development of Candida fungus in the intestine. The growth of this fungus is helped by the materials attached to intestinal walls and food that can not move properly through the colon. It causes inflammation and pain.
5. Loaded skin
Clogged colon spreads the amount of bacteria, dirt, fungi and other microbes throughout the body.
Bumps and pimples appear on the skin if the pores and cells are poisoned with toxins.
TOP 5 NATURAL REMEDIES FOR COLON CLEANSING
There are many treatments available for colon cleansing, ranging from medicines to non- surgical methods such as enema etc. There are also these natural home and herbal remedies that are safe without any side effects:
Fresh apples, including apple juice can cleanse your colon.
Have a glass of apple juice in the morning. Then, have a full glass of water. Consume apple juice at minimum three to four times daily. It encourages bowel movements and even eliminates toxins.
You can add something else in the apple juice, such as prune juice or lemon juice. Also, you can mix two tablespoons of fresh lemon juice in one glass of apple juice to get a slightly different taste.
Our body needs plenty of water daily to stay hydrated and our organs function properly. 8-10 glasses of water are required to be consumed every day. You can have warm water mixed with lemon juice and a teaspoon of honey in the morning. It will detoxify the body and improve your metabolism. Additionally, the bowel movement will be able to function properly.
Consuming plenty of water motivates the natural peristaltic action, making your colon function normally.
Triphala is an old herbal remedy recommended by Ayurveda. It is a natural laxative containing three ingredients- Amalaki (Emblica officinalis), Haritaki (Chebulic myrobalan), and Bhibitaki (Beleric myrobalan).
Triphala’s bioflavonoids, vitamin C, linoleic oil and phospholipids improve bowel movements and thus eliminate toxic materials from the body.
This herb can be found in Ayurveda health stores and even online Ayurveda products shops.
You just need to mix a tablespoon of triphala in a glass of water and drink it in the morning.
4. Fruits and Vegetables with High Fiber Content
Vegetables are very helpful in cleansing the colon because of their fiber. It keeps stool soft and so improves the bowel movement avoiding constipation. Vegetables and fruits with high fiber content motivate the body to remove waste every day, keeping your colon clean in a natural way.
Include lots of fruits and vegetables in your diet. Spinach, broccoli, peas, artichokes and other leafy and fibrous vegetables are good for cleansing colon. Fruits like raspberries, apples, pears, prunes etc. are also excellent for cleaning colon.
5. Sea Salt Water
CAUTION: Avoid this remedy for colon cleansing if you are suffering from high blood pressure or some heart related medical conditions. Also, consult your doctor if you want to try the remedy.
First understand that you should have a full day with you do experiment with this remedy. You must take rest after having salt water for the day. Now to the method:
In a glass of water add a tablespoon of sea salt. Let the mixture boil for a few seconds after you get up in the morning.
After it cools off, sip it like tea or coffee. Lie down after drinking it because you may feel a headache or nausea. You can gently massage your stomach.
Soon after, you will feel the need for bowel movement, maybe even for a few times. You will remove all the toxins out of your body.
Consume light meals, such as chicken soup, or steamed vegetables, water and also fresh fruits juices or other natural drinks.
story by aMw.com
Even though the world has progressed a lot in the last few hundred years, ignorance is still around every corner. It seems to be a constant battle of light against darkness. When people don’t know something or don’t understand it, they are usually afraid of it or hateful or contemptuous. When someone takes a moment to look at something from another person’s perspective, they’ll realize that they can relate to it.
Just recently, young mom Dallas Fowler was in the check-out line at her local Walmart when she came across ignorance face to face.
Fowler realized that her 2-year-old son Jameus wanted a little hug, so doing what any mom would do, she picked him up and gave him a quick cuddle. During the hug, the boy’s shirt lifted up revealing his colostomy bags – and the customer behind Fowler in line had a fit…
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The little boy’s colostomy bags cover his stomas and collect the waste hits body expels. Stomas connect an opening in the colon to the surface of the abdomen.
The other Walmart customer thought the sight of the boy’s colostomy bags was nightmarish. So she shrieked and told Fowler to cover up her “repulsive” boy. The woman demanded to know why Jameus was disfigured, like it was any of her business…
Fowler told the woman he had the colostomy bags because “his colon didn’t finish forming so he needed them.”
The other customer still thought the boy was disgusting and wasn’t afraid to say it to the mother’s face. So the mom walked to another checkout line where people were not so judgmental.
Because Jameus has Hirschsprung’s disease, a condition that results in problems with the large intestine, the little boy has been forced to undergo more than 20 surgeries with more scheduled in the future.
Fowler decided to share her experience with the ignorant woman with her supporters on Facebook.
She wrote: “Tonight, we were in Walmart standing in a long line waiting to check out. My sweet 2-year-old wanted me to hold him. As I picked him up out of the cart, his shirt came up exposing his two stomas and bags on his stomach. Typically, I have a onesie underneath his shirt but tonight I just got him dressed quickly to run to the store. The onesie helps to keep his bags in one place and makes it harder for him to tug and pull them
“There was an older woman in line behind me who caught a glimpse and shrieked a little before she said to me “why in the world would you let someone do that to him?”
“I turned around speechless and just looked at her before she continued and asked why he had them. I gave her the short version and basically said “his colon didn’t finish forming so he needed them.” I left out that he had a rare disease called Hirschsprung’s disease because I was a little annoyed from her first statement. She then goes “well I am sorry but I just think that is so ‘repulsing’, can you please keep his shirt down?” At this point I just wanted to shake this woman and scream “what is wrong with you?!” But instead, I told her to have a good night and went to another line.”
“See what that woman doesn’t understand is, when my son is healthy, he is no different than any other 2 year old. He runs, plays, swims and goes to daycare. When he’s healthy, you wouldn’t be able to look at him and know he’s had over 20 surgeries and procedures. You wouldn’t know that he’s got more ahead in his future. You wouldn’t know he gets painful home dilation and irrigation treatments twice a day every day. You wouldn’t know that every day a catheter is put into his stoma to “feed” it stool twice a day in the hopes of growing his colon. He’s my heart. He is so funny, and full of personality. He is sweet and loving and kind but also a little ball of fire.
“Please be kind and choose your words wisely, especially should you choose to comment about something that is none of your business. Everyone is fighting a battle you know nothing about, and my son is winning his.”
Supermarket giant Tesco has today announced that it will change the signage of its accessible toilets to reflect the ‘invisible nature’ of some health conditions. This follows a successful UK public campaign for support by Crohn’s and Colitis UK.
A major anxiety for people living with a chronic health condition, like Crohn’s Disease or Ulcerative Colitis, is being refused toilet access or being confronted about why they are using a disabled facility. Whilst someone may appear to look ‘okay’ on the outside, they may be in a daily battle with a serious medical condition and urgently need to use the ‘disabled’ or ‘accessible’ facilities.
The new signage will be rolled out to over 700 stores across the country, using the tagline message that ‘not all disabilities are visible’. Crohn’s and Colitis UK, called for supporters to back the campaign by emailing the bosses of the UK’s largest supermarkets; asking for their help to end the stigma and distress and help raise awareness that not every disability is visible.
The announcement follows Asda and Morrisons, who have already adopted new signage which has helped to highlight the true impact of these debilitating conditions. By supermarkets adopting new accessible toilet signs, it is a simple but effective act they could help to ensure that customers with a medical condition can use the toilet facilities without fear of criticism or embarrassment.
We are always listening to feedback from our customers on how we can improve our store facilities and when this issue was raised we felt it was important to make the change. We hope these new signs will help those customers who need to use a disabled toilet to do so without worry.
Tesco Customer Service Director
19,000 emails have been sent to the top supermarkets in the UK since the launch of the campaign five months ago. Tesco’s is the second major supermarket to agree to change its signage during that time.
This announcement is a great step by Tesco towards reducing stigma and raising awareness that not every disability is visible and everyone is grateful to them for making this change. People living with Inflammatory Bowel Disease can be very disadvantaged by the impact of their condition. They may not look unwell but are often profoundly affected by debilitating and unseen symptoms that affect all aspects of their lives. The experience or fear of unpredictable incontinence is very undermining to a person’s confidence and self-esteem and can lead in some cases to the person affected becoming too anxious to leave their home.
Crohn’s and Colitis UK
- See more at: https://www.crohnsandcolitis.org.uk/news/tesco-announces-new-toilet-signage-for-invisible-conditions?utm_source=Twitter&utm_campaign=Tesco+announces+new+toilet+signage+for+%E2%80%98invisible%E2%80%99+conditions&utm_medium=Social+Media#sthash.GDoKdDxh.dpuf
I am a mum of three precious children, one suffering from Hirschprung Disease...wanting to connect, share, support and make a difference.