Hi, can anyone help is this normal has anyone ... - Behçet's UK

Behçet's UK
4,469 members3,817 posts

Hi, can anyone help is this normal has anyone suffered with chronic constipation out of the blue+ stabbing pains in stomach & painful veins?

My seven year old was admitted to hospital whilst away on holiday with stabbing pains in stomach that got worse and worse, she didn't move for four days , just cried and withered in pain also from knees nd ankles.

Took her to GP before we left to go away and he gave Lactolouse which didn't help . At the hospital they gave her the usual pain relief which did nothing and then morphine which she had two doses of .

The surgeons gave her an enema which didn't work and the pediatrician then gave movical 12 sachets then down to one. Tonight pains are back - not really gone away.

Last night the vein on the back of her leg popped up and caused lots of aching and pain. Sent photos th GOSH and on call reg called me to take her to local hospital which I did . Because it was hot today the dr looked at her and shrugged ,but the veins hurt and the kin around is darker in colour ? She also or three days has had a vein between her index and thumb that has been causing pain . We are still awaiting bone marrow biopsies date and no one will give her anything for pain etc except GP who gave anesthtic strips for joint pain which GOSH don't want her to use? As he thought her suffering has gone on to long . I don't know what is normal or not ?

14 Replies

Hi just sent you a private message.


You poor thing, you must be going out of your mind.

If it were my child, I would take her to GOSH as soon as I could and in the meantime, don't leave A&E until the pain is controlled properly. If they won't make her comfortable, ask them why they are withholding care.

I know constipation and Movicol well. Try cutting animal products and giving her probiotics.

I'm good as long as I stick to this.


We are under GOSHbut they will not treat her till she has had bone marrow biopsies and still don't have a date ? Very frustrating . Thank you will try probiotics .


Poor thing! I was bloated over the winter months and severe stomach cramps. CT showed : extereme constipation which I already knew. No laxatives or enemas were effective until I went to the health food store and got helpful advice on probiotics - the brand was protec. I also took more than the recommended dosage like she said: 5 pills at the same time everyday, and I also got 100% pure aloe vera juice. It's clear and tasteless, the brand is: george's. These two got things moving! Also rub her belly clockwise in circular patterns for stimulation.Around the belly button and go from small circles to larger ones. Liquids is also important. Good luck to you! This worked for me :)


I second the probiotic dosage - I also take double the recommended dose and I'm just ticking over.

1 like

Probably won't believe me but I use a small amount of psylium husk powder in a cup a soup....works absolutely brilliant and helps to thicken the soup. About a large tip of a spoonfull of psyllium added to the cup with a small amount of cold water to mix and then top up with hot water.......well worth a try as it never fails and I have had an impacted bowel before and chronic constipation.


Hi Motherof4,

I support everything the above people have said.

My 11 year old daughter has BD and started with symptoms as a 5 year old. Over the past years the disease progressed and due to medication not working as well as it should, Jaida is now on IV infliximab as well.

In regards to constipation part of BD, Jaida had terrible pains as you are describing that got worse. Then in December the specalist didn't take things seriously enough and Jaida had a stretched bowel as it was fully impacted, even up under the ribs. He said Jaida wasn't complaining enough for him to be worried. Amazing how tough our babies are. Jaida on OzmoLa x 1 scoop morning & night and lactulose x 15 mls Morning & night was double this at the start. The specalists recommended it to be better for children, rather than Movocole. After 10 months Jaida still has trouble but constantly being on these products is helping the bowel to shrink back to it's normal size. Please note there may be a few little accidents but a panty liner and baby whipes help. I have them in her school bag and in our car. Sounds rotten but the pain of constipation is far worse.

Good Luck and I do hope the specalists listen and give your baby some relief. BD is not fair but if you can get a specalist to take control of the situation, things can be better. I'm in Australia, where are you?

Michelle x


Hi thank you for you response , we are in the UK , under Gt Ormond St, but only one consultant takes us seriously , the others.. sounds awful but don't seem to care.

I just can't understand why they are taking so long to help her. I had her in bed again last night as everything was hurting . So very tired and grumpy today. Did , do you have people you don't know say she looks ok . I found even family until they witnessed the pain etc thought there was nothing wrong with her, now they can see by looking at her.she hasn't grown or put on weight in a year and again that's ok ? She has two new mouth ulcers today one on the lip and other under Neath , she seems to get rid of one - 15 and then a new lot turn up! Any advice etc welcome , hope your daughter improves x


Dear Motherof4,

Jaida has ulcers on inside cheeks, under tounge, inside lips just horrible. Up nose in sinus, arms, legs, face and down below. She has the bad joints, around finger nails that bleed, tummy problems and the shocking headaches that are more like migrains. Has also had BD meningitis. But for the past four months we have been worried about the sight in her left eye going. That's why the infliximab was started. You asked in one of your questions if it's worse on one side that the other, Jaida's is the left side. Still pain on the right but left everything worse.

A wonderful specalist once said to me, "we are waiting for things to present themselves, but at the moment they are circling and we dont know what to fight it with." At the time I thought what a load of rubbish, but he was right. Every drug has it's correct use and if given the wrong one your child may still miss out on the benifit of a different medication.

After feeling lost for the previous 5 years this sight has helped me understand not only the drigs but we are not alone.

The ulcers are still a trouble but only with a cold. The weight loss and stunted growth is what we and the family noticed. Jaida was pale in colour and just looked sick. It's suck a difficult time for you and others in the family.

I understand too well the rediculous statments made by people who don't understand and at times I felt they didn't care. I was bought up to have empathy for others less fortunate. Well others arn't. For nearly 2 years I stopped seeing negarive, rude people (some were family) and concentrated on my two children. Not only was Jaida in hospital a week out a week and so on for about five months this year, I missed my husband and son Ruben, 9 terribly. No one can prepare us for that.

Jaida start on a low dose of Colchicine at the very start. This helped with the joint pain and a little with the amount of ulcers. I'm not sure if I should give any advice as I'm not your childs doctor. BUT if your child ends up, at any stage on steroids PLEASE make sure the doctor also start Caltrate Plus for the bones. We were not told and after 4 months on 25 mg a day, Jaida's spine wasn't great. But fantastic now.

I don't mean to scare you but by now I'm sure you know what BD is capable of. Stay possitive and surround yourself with supportive and loving people. This helped me. So sorry to go on.

Michelle x


Sorry it should read, Such a difficult time. Not Suck. oops


Hi Hun,

I have sent you a PM.



Been thinking of you both, just wondering has she had an X-ray or ultrasound of the bowel? X Michelle


Me too Michja hun ! I am very concerned about this poorly little 'Tiddly Peep' too ! Could we possibly have an update of how she is doing today please ? xx :)


Hi , spoke to Gt Ormond st the on call reg , who said my consultant is away but that rhemotology should take a step back!??! And she should have a colonoscopy and endoscopy in light of stomach pains and that I myself have ulcerated colitis . I feel like we take big steps forward and then massive step backwards. We have been waiting a month for a bone marrow and mouth ulcer biopsies and still no idea when that will happen I can't understand what's going on !

This weekend she has had a breather in the fact she has been up and about playing etc, but in the evenings her joints are hurting a lot and stomach pains start up ( the are there in the day as well)

Again we feel like She is being lost in the system , I asked the on call reg if they had ruled out Bechets then the way she was speaking ( so many contradictions ) and she said no the investigations need to be done as her blood tests are not really showing anything . I thought Bechets didn't show many things on bloods any way ? She has occasional high white cells but no raised ESR at the time. Other times her CRP is really high . I mentioned again how her history of chronic tonsillitis and then glandular fever and that she has been ill for a year and a month now without any treatment except ibpfurn and paracetamol plus gasto drugs and movical .

Is it me or do the dr look at the here and now and forget all the rashes , nodules , swollen knees, ankles etc? I am glad they are taking her tummy pains etc seriously just frustrated that everything takes so long........ I should be use to it by now but I can't believe this system is working . Even my GP thinks they are dragging hills . Does anyone think it would be a good idea to ask him to refer her to Barts? I emailed them with her symptoms and they said they would take her with a GP referral . I mentioned this to another GP a few months ago and she practical shouted at me that I just needed to give it time and focus on one consultant ( who I rarely get to see ) and not to confuse treatment ... What treatment?

Sorry in a ranting mode.

Thank you for the support x


You may also like...