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[Rhoadsie]

Hi,
Peter is 12 and he is my grandson.
This is difficult for me as I am not used to using forums but am desperate for some support and information
Peter, was diagnosed with Crohns disease about two years ago. It must have been building up and he didnt say anything. We just noticed that he was not eating properly some days and he had some stomach discomforts we put down to gastric bugs.
It was a complete shock when after a particularly bad bout of digestive problems, we went to a consultant.
He has endoscopies that showed he had damage and ulcerations throughout his digestive system.
We were devastated and felt so guilty that we had not picked up on this sooner.
He was put on six weeks of a nutritional drink program which was pretty awful but seemed to settle the condition.
He has had a couple of incidents where he has been uncomfortable but nothing like that first time.
About six weeks ago he was set upon by five youths, older than him and punched in the stomach.
Apart from the immediate distress he had to endure an investigation that we pulled out of in the end as the police were getting nowhere.
He of course was nervous of going to school and we got him help and ensured safe passage home for him.
About three weeks ago he started to show symproms of digestion problems like not really eating and not feeling too well. He had also developed a perineal abscess.
I got him back to the consultant who put him on immunosuppressors and antibiotics.
After about a week He was sick every night after the medication. We finished the antibiotics but I stopped the immunosupressors for three days then started them again. He was fine whilst not taking them, then sick when he did. I again approached the consultant and asked if there was another brand. He said to repeat the same pattern to be sure it was the drugs. We did this missing the tablets on Thurs Friday and Saturday of last week and then he was given them again on Sunday night at 8. He had been feeling ok for the three days but at midnight on Sunday he was violently ill and writhing about in agony with his upper stomach. He is currently on an Intravenous infusion in the hospital having antibiotics and also prednisolone through the drip.
I have refused to let them give him the immunosupressor as well as I believe from the blood tests that it had irritated his pancreas, hence the pain.
I am so scared that they are getting it wrong. Does anyone know of symptoms like this and if you have been given prenisolone, how do you feel
I feel so helpless as does his mother.
I am looking for counselling for her as she is taking the brunt of all of this

Help!!!

 

[CeeCeeGo]

Hello

I am so sorry to hear what your grandson and all of you have been going through recently.

In my opinion you were right to stop the immunosuppressants as the symptoms you described sound like Peter had a severe reaction to them.

What I can say to you is that this forum is full of people with Crohns who have been through many experiences and meds as a result of this condition and you will generally find some helpful advice on here to your questions/concerns. Always ask on here nothing is too gross or silly to ask about.

My consultant referred me for counselling when I was struggling to deal with this condition and it really helped me.

There is a support group on here for family members whose children/grandchildren have Crohns and they will be more than happy to welcome you and your daughter.

Another idea is to find the right consultant/IBD team that you feel comfortable with especially when maybe a phone call or email to them may be able to answer your questions quickly. I have found this really useful as it doesn't waste their clinic time or mean you have to wait too long for an answer.

You may also find that at times you have to be quite assertive with the medics - but that is life!

Take care and let us know how things are going with Peter - I hope he starts to feel better soon.

 

[Rhoadsie]

Thank you for your swift reply. I will keep using the forum and yes, email other consultants. Feeling less helpless now thanks to you

Sue

 

[Honey]

Hi there, and welcome,
Sorry to hear about your grandson who has been having such a difficult time. You are right to question and be wary of some treatments. Azathiprone probably the wrong spelling, caused me to suffer Pancreatitis,such excruciating pain! Unfortunately, meds have to be tried to see if they reduce the inflammation. It is a individual thing! I am now on 8 weekly Infliximab infusions at the hospital as nothing else worked! I am doing well on that. I too take Prednisolone andthe only side effect is weight gain. Let me know how you do. Best wishes,anda:

 

[Rhoadsie]

Thanks Honey.
The drug you mentioned is the one that has triggered his pancreatitis. Its so hard to watch someone in that pain. He is having his steroids intravenously and may have to fgo back on the cartons of nutrition for a couple of weeks but just so it makes it easier for him. I will put him in touch with the kids section of threads so he doesnt feel like he is the only one.
My daughter has a theory which we are going to pursue. My neice has the diseases and came off steroids for a break and to have her two boys. Whilst pregnant she had no flare ups or problems. When she had the second child it was many months before the disease resurfaced. I am wondering if the change in hormones produced at this time helped and if so it may be a more natural way of controlling the disease. I am going to put it forward for discussion. Anything that may help really

Again thanks for your swift and helpful response.

Sue

 

[Honey]

Hi there Rhoadsie,
Steroids, like Budesonide, only give you the feel good factor , increase your appetite and your weight, but do little for the inflammation. They are only meant to be short term. I was on Budesonide for 8 months as I was not happy about Chemo treatment. However, I began to have more unwanted side effects, and so had to agree to Infliximab infusions! I am well enough now to go on holiday soon. I hope your grandson feels better soon. It is such a fickle illness. The forum will help him to say how he feels. Best wishes.


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