Splenic flexure syndrome

[Robinia]

Anyone come across this? My son has severe symptoms and I’m trying to work out if this is causing some or all of them. Dr. Google obvs 😉

He’s massively bloated, nauseous, vomiting and in severe abdominal pain, high on the left side. He’s also completely incontinent of the bowel following severe impaction and multiple enemas. He’s only 9 poor little boy and is extremely angry and violent on a daily basis due to the pain and how miserable life is at the moment.

Even if you’ve never heard of splenic flexure syndrome and just have some soothing words of understanding...I would be grateful to hear them!

[Littlecabbage]

I’m sorry, I have no helpful experiences or knowledge to share, but I am so sorry that your son is suffering like this. Presumably he is under consultant care somewhere. I hope he gets the help he needs soon xxxx

[Surrey05]

I’m sorry to hear about your son. Mine has mood changes, anger issues hates his self why me he can also go the way with his behaviour his now 12. It’s so draining and heart wrenching to see your child go through such pain, embarrassment , worrying about having accidents, being bullied. My son has just started secondary school and all the above is still with him.

But it does get a little easier.

Sending all our love and strength to you all.

[Robinia in reply to Surrey05]

Wow thank you to you both. It does help to feel less alone with it. I’ve done everything I can to get the help and support he needs, I pushed for paediatric gastroenterologist but he’s not been any help so far. We are seeing a private nutritional therapist next week so I’m hopeful for that. I’m going to start him on a low fodmap diet next week. I referred us in for school nursing, pushed for continence service and paediatrician referral and have all those on board. Currently trying to get him to see hospital psychologist but this is involving a battle to get them to prioritise him. I’m so grateful for this group as it feel like a life line some days. He had issues when he was young but it’s a million times worse when they’re older

[Surrey05]

Oh bless you. It’s horrible isn’t it. Having to justify there selfs and there pain Schools are a major issue with us. There’s no way I’m sending my son when his got leakage like they expect him to attend. Do you have a medical plan in place at school. . Mine has seen a physiologist at Great Ormand street and the nutrition specialist. Not 💯 sure it helped in the long term I think mine like the fact that he got the one on one attention.

I still have trouble getting him to take his medicine so we will be back to square one again with him being impacted.

Ask for a second opinion. Stand up for your son and your self , because I was one off those parents who just went with what I got told to do When he was 11 they did a marker test and the results came back that he has slow transit constipation. I’ve been asking for them if there was any test they could do since he was a baby. You need to be consistent with medication that’s our down fall as it’s a battle

So you need to try and stay strong, have a positive attitude and as much knowledge as possible. Google read what you can. Take notes and ask questions. Sorry to go on and please excuse my spelling and also if my message doesn’t make sense.

Love to you and your family. 💕

[Robinia]

Thank you so so so so much. I have tears in my eyes reading your reply. It feels like an enormous mountain at times (especially when I’m being whacked in the face or trying to protect my 5 year old daughter who has now learned to hide as soon as she sees him flip 🙄)

School have been better since a meeting between me, the head and the school nurse where I cried and was upfront about how bad things are sometimes. The continence nurse suggested pull ups while the poo is constantly leaking (apparently he’s not constipated anymore but it can take the bowel months to heal) and tbh the pull ups have really helped as the soiling was so severe that it would leak into his trousers despite 2 pads in his pants. But the hardest thing for him is the extreme pain he is in which is aggravated by eating, drinking and taking movicol (4 sachets a day). I know it will be better one day but my heart is breaking when he’s crying with pain like he did last night and then burping and puking. How did you get to Great Ormond Street? If the gastroenterologist is dismissive when I see him in March then I’m going to look for someone else to take him to. I will not let him down and I will continue to fight the good fight xx

[Surrey05 in reply to Robinia]

Aww thank you it’s been bumpy ride. Your poor little man and your little girl. It’s horrible to see your children hurting there siblings. I wonder if he takes it in her because she’s not going through what he is. It’s so hard for them to express there emotions through speech sometimes. I’ve also got a 13 year old who’s got anxiety issues with going to school always has hated school but June last year he just stopped and refused tried everything. Thank my lucky stars CAMHS are now involved so that keeps education welfare off my back. He finds it hard to express his self through speaking he never use to until he hit puberty. Both my boys are under great Ormand street they have a rare skin disease which thankfully is mild dominant dystrophic epidermolysis .bullosa. So they originally thought his bowel problem was linked to EB. Why don’t you lower the does off movicol because that can cause stomach cramps. Mine use to be on 10 -12 daily constantly with other medicine stimulates. So I took it upon myself to lower and cut some out.

It’s also very worrying for them to go to a friends for tea or infact leaving them with anyone because you don’t want to put it upon anyone else. Please keep in touch and I’m going to read up on your sons condition

Keep well and smile

Amanda

[Pyscho]

Hi,I'm 50 and have splenic flexure,it is an awful problem and I have spent many hours in agony or unable to leave the toilet,I had a very good doctor,but alas he has retired,he said there was an operation but advised me not to have it as more go wrong than right and you really don't want anyone cocking up your colon ,I used to have a bout of SF every month,but I now take coconut oil tablets and in 9 months I have not had one episode,I originally took them for something completely different but noticed that since taking them I've been fine ,I order them every month now ,and wouldn't be without them ,maybe it's worth a try on your child ,there's no side effects there natural,they take about a month to get into the system so do hang in there ,

Cheers and good luck

[Robinia in reply to Pyscho]

Thanks so much, I really appreciate that, definitely worth a try!