Hospital again

[CDJ]

Josh was admitted to hospital again on Monday after getting severe stomach pains and opening his bowels 15 times in a day. These symptoms have now been going on for around 6 weeks or so.

They are going to do a colonoscopy again, though as they found crohns in his small bowel last year and scopes don't reach this far I don't think that we will get answers from this.

The most frustrating thing out of all of this is the constant doubt from his doctors ---- the same doctors who diagnoised crohns in his large bowel 5 years again when he was found to be inflammed inside from mouth to anus and full of ulcers. They then found crohns in his small bowel last year. We are told it is also in his stomach.

So why to they persist on thinking that his symptoms this time aren't a flare up? Why do I have to argue all the time to get him help? They make me feel as if they are not believing the symptoms and he is making things up!!
We are questioned all the time as Josh doesn't "present" normally for a crohns patient. Even today the doctor is saying that they may well rule out crohns when they do the endoscopies. How can that be when all endoscopies so far have shown that he has active crohns? How can he suddenly not have it? And if he doesn't what is causing all these symptoms?

I am completly fed up with all this and the endless doubt we get. I can't understand how a gastro team of doctors will not believe crohns symptoms.

We went through the same thing two years ago when they were slow then when Josh had another flare up. They left him until he had lost 16kg [ 35lb] with very little help because they doubted his symptoms then as well. Six months later was when they eventually found he now had crohns in his small bowel which were causing his symptoms. I am afraid that they will do the same this time too.

I am beyond frustrated with this and it is so hard dealing with all this on my own. This is about the only time I wish for a partner to offload to.

 

[SupportiveMom]

Oh I am so sorry to hear you & Josh going through this! I'm not surprised with the last few posts that he ended up in the hospital again. It baffles me that they can even question his diagnosis with what is going on. Have you asked for a pill cam? Has he had an MRE?

I could see if you had different doctors & they questioned a previous diagnosis from someone else but they are questioning their own diagnosis? If they think they got it wrong last time how can they think they will get it right this time? Nothing worse than questioning if the docs know what they are doing. It makes you question every thing they do. I would push them into saying what else they think it could be if it isn't Crohn's. There isn't much else it can be when all the Crohn's symptoms and results present themselves this way. I tried exploring that avenue when D was in the hospital the 4th time. Since she wasn't responding well to any meds I was thinking she had Crohn's & something else & the something else was preventing the drugs to work. They tested her for everything under the sun including bowel cancer, leukemia, lupus, and other things. All came back negative. Maybe they can test for other things to do the process of elimination to get back down to the diagnosis you know he has, Crohn's. Sending you our support.

 

[Momtotwo]

We all dream that our kids were misdiagnosed and it's some more simple, I think. But it's really odd that you have disease confirmation with standard tests and now they are questions years later. Fortunately, I have never encountered this with my children but I have encountered it with a parent with a chronic disease. Sometimes, when routine care doesn't work for a particular patient and a doctor cannot solve that problem, the doctor puts the responsibility and the "failure" onto the patient. Instead of admitting/accepting that it is the doctor who is failing and not finding the right solution and diagnosis. My parent was labeled as having anxiety/psychosomatic symptoms and then required a major surgery. They believed her at that point.

 

[CDJ]

Momtotwo, that is just how I feel! The doctor can't understand the problem , so they are putting the responsibilty back onto us! Josh was also labelled as having anxiety problems last year as well as having a possible eating disorder!! They couldn't apologise enough when they found that actually the crohns was now in his small bowel! So I really can't understand why we have to go through all of this again, the constant doubting is draining.

Supportivemom, they have said they can't do a capsule endoscopy again as it wouldn't show whether the crohns has actually increased in the small bowel, all it will show is that it is there. We are still waiting for a date for an MRI scan, which could be in a couple of weeks. This is the problem with the NHS in the Uk sometimes, is the length of time it takes to get anything done.

 

[Sascot]

What a shame. I also found it exhausting trying to get doctors to take us seriously as my son only had a sore tummy, no other symptoms. It took a year and a half of doubt - "tummy migraines" "sometimes you have to live with a sore tummy" and my personal favourite "are you happy at school/home". My daughter has started with symptoms and we have already been asked if she is happy at school or having trouble with friends etc. Why are they so quick to assume it's all in their heads?
Hope you do get some answers and more importantly, treatment to help!

 

[SupportiveMom]

I hear you with the wait. Only slightly better here some of the time. I have waited from 1.5 months to 3 weeks for an MRE. The last time it was suggested to go over the border to the US to get it done faster. I'm not starting that situation nor can I afford it even if I get paid back down the road. The tests are expensive.

 

[CDJ]

Josh finally had the endoscopies today! Really didn't think it would happen as they kept putting it off. Poor boy has had to do almost 3 days of bowel prep!

Though his bowel looks okay there is inflammation in his rectum, which he is going to be given local steriod. We still have to wait for the MRI appointment to see if his small bowel is worse.
Would the inflammation in his rectum be enough to have all the symptoms he has had for the past few weeks or does it point more to the disease progressing in his small bowel? I am so worried that they won't find further disease in his small bowel and we will then be back to square one!

 

[SupportiveMom]

I think it is possible that all of his issues could be related to the inflammation in his rectum. D used cortifoam when that area was at its worse. It helped to give her relief. The hardest part was administering it. No teen should be subject to his/her mom inserting anything into their bums. Mine though couldn't do it on her own.

 

[Momtotwo]

Poor kid having to do 3 days of bowel prep. Hope the small intestine is clear.

Supportivemom- does that heal the area or just provide symptomatic relief. I think we are on the same path.

 

[kimmidwife]

CDJ,
So sorry to hear. It doesn't make any sense what they are saying if they saw crohns he has Crohn's that is the bottom line. Can you find a place to take him for another opinion? I know it is more difficult where you live but if there is any way you could get a second opinion it sounds like to might be worthwhile.

 

[Farmwife]

I'm sorry it took 3 days to get it done.:voodoo:

how's Josh handling it all?

Do you have someone to give you a break?

 

[SupportiveMom]

Cortifoam does help to heal. Can't do it too long term but it definitely works fast. I relate it to putting calomine lotion on a bug bite. Feels a bit gooy and weird putting on, but soothes. Feeling doesn't last long though and the goal is to avoid the bathroom after for as long as possible.

I will say D had little problem with me doing the cortifoam at age 11. When we revisited cortifoam again at 13 she hated it. Something about showing your mom your teenage bum I think was the issue.

 

[CDJ]

We finally got home last night. We would have been home earlier if pharmacy had been quicker. We had to wait 7 hours for them to get to the ward with the prescription!
The prescription is Salofalk rectal foam.

The nurse on the ward was very good and went through the whole thing with Josh properly to show him how to use it. Though only doing it once so far, he did do it himself with no problem. Hopefully that will continue
Still waiting for a date for the MRI. Hoping things will settle down for a while now.

 

[SupportiveMom]

I hope the foam works well. Glad you are home and I hope he gets relief from it quickly.

How is he feeling mentally.

 

[CDJ]

So far, touch wood, things are going fine. Mentally Josh never really lets things get him down. He tends to just bounce back. I hope that he can continue with this attitude.
I think it is more me that this affects mentally as I am the one fighting his corner all the time.

 

[DustyKat]

My goodness CDJ…:ghug:…I am so very sorry that your lad is going through all this and you too!

I hope the foam takes care of the rectal inflammation and soon. TBH, by the sound of the severe stomach pain he has been experiencing it would tend to point to small bowel disease.

I too am at a loss as to the why the doctors are second guessing themselves on the diagnosis and in doing so not treating his symptoms as Crohn’s straight up and working their way back from their if need be.

I hope the MRI will be soon and you and your boy have solid answers and lasting relief.

Dusty. xxx