Collagenous Colitis in my daughter with a brain injury.

[Ettenna]

My daughter was involved in a serious car crash last year and has been in a low awareness state (similar to a coma) since then. She has suffered with really loose stools since then. I am talking really explosive, running out of her type diarrhoea. Sorry if its tmi. She had a flexiseal to try to control it for a while while she was in HDU because the skin was just getting excoriated and she was at risk of her skin breaking down completely. The flexiseal was removed after a few weeks because she kept coughing and it would come out. Because she has Type 1 diabetes and prone to other auto immune diseases, she had a flexisig done which apparently showed no problems. She is now in a Neuro rehab facility and the problem still continues. She is PEG fed for 20 hours a day. Se recently had an admission to hospital and I saw her "issues" first hand!! She wears "nappies" and it explodes out of it.

However, on one of her discharge papers I noted that one of her pre existing conditions was collagenous colitis. I had never heard of it before!! I mentioned it to her GP and the senior nurse at the home last week because it sounded as if it might be her problem. They said they would look into it.

What tests might be done to determine if it is what she's developed? And what treatment might she have?

Thank you xxx

 

[David]

Hi Ettenna and welcome to the community. I'm so sorry to hear about your daughter

*hugs*

Has she ever had a colonoscopy? That's the only way to diagnose Collagenous Colitis.

All my best to you and your family.

 

[Ettenna]

Hi,

She hasn't had a colonoscopy. Not quite sure how they will manage the bowel cleansing with her! I am going to visit her today and make sure that the home have received the information I sent them.

I am concerned that because she has a brain injury that her potential disease wont be taken seriously. The home are very good with her illnesses and ensure that she gets treatment but I don't want her to be ignored by other health care providers and out to the bottom of a list. I have to be her advocate.

The last time she was admitted to hospital she had severe dehydration, partly caused by very high blood sugars, partly sepsis and partly due to the diarrhoea.

Everything that is done to and with her is complicated by her brain injury, PEG feeding and T1 diabetes!! Who ever said that life was simple?

 

[David]

There is no way she was properly diagnosed with collagenous colitis then. CC is a form of microscopic colitis that is only diagnosed via biopsy taken by colonoscopy.

 

[lizbeth]

Hello Ettenna, welcome to the forum.

I can't offer you any thoughts about the collagenous colitis because it is not something I know about sorry.

I am also type 1 diabetic so I do understand how your daughters health is complicated by this disease and know it is difficult to balance everything for the best and completely empathize with your worries. Is there input from a diabetes team that have given advice as to how to manage your daughters high BGs and what to do long-term? It might be worth trying to have a protocol written by her diabetes consultant that would be followed by the home staff, I apologize if this is something already in place, I'm really just trying to think of something useful?

I want to let you know that you are in my thoughts and that I will pray that your daughter has better times soon, take care and best wishes.

 

[Ettenna]

David, she had a flexisig which, according to Crohns & Colitis UK, can in some circumstances diagnose Collagenous Colitis. However, until I speak to the GP, or get to see her medical notes, I don't know whether she had a biopsy done.

Lizbeth, I worry constantly about her diabetes, even before her accident. She was only diagnosed in Feb 2011 at 17 so I came as rather a shock to everyone. She was under a diabetes team when she was in high dependency in hospital but it has gone a bit wrong now. The home where she is doesn't currently have a community diabetes nurse. When she was last in hospital she was visited by the diabetes specialist nurse and she was going to write to the home and tell them exactly what to do with her blood sugars, especially when high. They only test for ketones using urine dip stick, not the monitor.

I think I might have to request her notes from the last hospital to see exactly what has been done.

 

[David]

Yes, a flex sig could do it, but there MUST be a biopsy done for the diagnosis as it is microscopic in nature.

 

[lizbeth]

Are you in the UK? It would be worth contacting the diabetes specialist nurse and discuss your concerns with her, mine provides me with a blood monitor when needed which is great. It would be my opinion that it would be important to have blood glucose levels tested at least twice daily, breakfast and dinner one day then next day lunch and bedtime, with a monitor. Checking for ketones definitely is good to do too. She may also be able to liaise with you and the home nurse manager to discuss and agree a diabetes management program for your daughter, that at least might give you a bit of piece of mind knowing that as much as possible was being done to control this issue for her, which then in turn would help other issues.

 

[Ettenna]

She has a blood monitor. Her bloods are monitored every 4 hours. I have given them a ketone monitor and strips now. The main issue is that there is no community diabetes nurse that covers her home. When she goes into hospital they review her but there is no follow up. The home do their best with her. Even before her accident her blood sugars were uncontrollable rather than uncontrolled.

 

[lizbeth]

I can appreciate the uncontrollable aspect.....I have always struggled to control mine, no matter what I did, it's incredibly frustrating . I'm sorry if I made very obvious suggestions before, I didn't mean to be disrespectful.......:hug:

Did you make request for your daughters notes? How are things at the minute? :ghug: