henoch and crohns

[hgw]

My daughter is in her 30s and last year was diagnosed with Crohns. When she was five, she had a bad case of Henoch Schoenlein Purpura which caused the usual large blemishes,swollen joints, blood in her urine and black stools caused by internal bleeding. She was off school for about two months, but needed no medication. Only time for it to subside. She did have very severe abdominal pain. She grew up with no after effects, is tall and well nourished. Occasionally since her twenties she has had stomach pains, especially when stressed, and finally last year due to a great shock, she was rushed into hospital and finally after tests,and scans and colonoscopy, was diagnosed with Crohns. Apart from bouts of pain, she has no weight loss, or diarrohea. As she dismisses the HSP as nothing to do with it and will not mention it to her specialist, I really want to know if this is relevant to her now condition and should the specialist be told. I would be so grateful for an answer,

[lizziecee]

Hi Hendrika,

The emotional aspect of Crohn's can be the most difficult one to deal with, since we, or at least I was, told the disease is incurable, but can be treated. I sometimes think it is like the bubonic plagues - spoken of in whispers, as indeed cancer used to be some 20-30 yrs ago. Friends and relatives have no conception as to what the disease is, and when you say it is an auto-immune disease, one could thought of speaking in a foreign language.  I just don't bother explaning any more, mainly because uneducated people fid the details embarrassing - I don't now.

Having Crohn's disease does not define me as a person and I try hard not to let it take over my life. Ironically, when I was dx with invasive breast cancer in 2003, having 2 surgeries, 4 months of chemo which made me totally faecally incontinent and housebound, 25 radiotherapy treatments, I have found Crohn's more difficult to deal with than breast cancer, as there are still so many questions the medics/scientists have as to the cause of Crohn's and how to treat, whereas there have been exponential developments in breast cancer.

Although I do attend the AGM of the local Crohn's & Colitis Group, I do not go to their monthly support meetings for a number of reasons.  I do not want to sit around a pub all evening talking about my symptoms, and secondly, I would need to get a ferry and cab to attend. The ferry stops at 6.30 pm in the winter and the round trip cab fare is about $120.

Our National Association for Colitis and Crohn's (NACC) publish a very informative quarterly newsletter which gives updates on research into the causes and new drugs, but also does address the emotional isolation one feels with IBD. They have a facility whereby patients can privately contact each other for support. Noticing the people who ask for this service, I find they are usually in their 20's to late 30's and more often than not, recently diagnosed.

I have never had any counselling, nor has it been offered within our socialised medicine service here in England. My support has come from my incredibly caring and intelligent husband, who is almost 80 this year, but is still willing to discuss my health problems in a sensible manner. He comes with to me all my appointments and procedures, whether for Crohn's or breast cancer, and I truly would be lost without him.

Only with the advent of the internet, have I been able to do proper research into Crohn's and this has made me accept, to a great extent, my disease. Previously, I felt very isolated with what little knowledge my various gastros gave me, and some were arrogant and patronising. I now have a brilliant young consultant gastro, who at times blinds me with science, but at least he takes the time to explain my symptoms and necessary action he suggests, and I feel involved in my treatment.

Perhaps a different counsellor, someone very sympathetic to such an insidious socially embarrassing disease, may help your daughter.

I wish her peace in coming to terms with her illness - as my gastro said: "Crohn's is not a life sentence, it is a word."
Take care - you sound a wonderful, caring Mum to take the time to research Crohn's for your daughter - we should all have a Mum like you.
Liz.

[hgw]

Thank you so much for your reply. I found it very helpful and agree with you about respecting her privacy. She is not a child after all, even if I still think of her as such! You sound a very sympathetic person,and as one who also has Crohns, how would you suggest she deals with the emotional side of this. She is very bitter and worried all the time whenever she gets a twinge. She has seen a counsellor who only talked diet, but my daughter says at the moment she just wants someone to tell her how to get her head round it. She is very clever,which probably doesnt help! I know there are groups she could attend, but I dont think she wants this at the moment. Just a one to one. Would a different counsellor with a different approach help, do you think,
best wishes
Hendrika

[lizziecee]

As the Community Leader, I would like to extend a warm welcome to our Crohn's community forum.  Many of the posters do try to help others, and no question is too small, or indeed, large. Sometimes, all we can give is emotional support, but that too, is very valuable.

I have had Crohn's for 38 yrs, diagnosed at age 26, and did not "present" typically as I had no abdominal pain, just severe weight loss and diarrhea. Believe this is why the diagnosis took some 9 months in 5 different hospitals. There were no endoscopies or colonoscopies then, so I had to have a laparatomy with 15 biopsies to confirm the disease on pathology.  Crohn's is a very difficult disease to both diagnose and keep in remission.  Not all patients present with the same symptoms. If your daughter only had a colonoscopy (and not also an endoscopy of the small intestine) this could be the reason why she has no diarrhea or weight loss.  Crohn's does typically, but not always, start in the small intestine, around the terminal ileum (next to the appendix) and if her small intestine is clear, then she will not suffer malabsorption and consequent diarrhea/weight loss, as her food is being metabolised correctly in the small intestine.  Crohn's can affect anywhere in the GI tract, from mouth to anus, and atypically, the eyes. I am sure if her doctors gave her a Crohn's diagnosis, biopsies of the colon would have been taken, looked at by a pathologist, and their opinion is clear.

I am afraid I don't have the answer about your daughter's possible connection between HSP and Crohn's, but would have thought that if she had Crohn's as a child, the intervening years would have elicited many of the typical symptoms of an adult, plus failure to thrive.   As she has thrived, I would doubt the HSP is connected, but I am not a gastroenterologist, and there are many unusual diseases/interconnections with medical issues that are not fully understood.

As your daughter is an adult, I would tactfully think you need to respect her wishes as to what information she divulges to her doctor, although you may possibly disagree. I personally tell all my doctors (breast cancer surgeon, Oncologist, GP and gastro) of all my childhood illnesses, as I was in an isolation hospital at 9 yrs old, with scarlet fever and still don't know if this was a precursor to the effects on my immune system. My twin brother and elder sister did not get sf. Perhaps you could post on the Doctor's part of the forum that Dr. Kevin Pho responds too, as he may have the answer you are looking for. Take care,
Liz.