Maybe joining the Crohns train again.

[Catherine]

The heading saying it all.

But Sarah is great. Living In Queensland. She is in it her words living her best life. 18 months post major bowel surgery.

My middle daughter R aged 24 . The one I have never had any concerns regarding Crohn's. Went to get her AsttraZeneca covid19 vaccinate from chemist and was refused due to stomach pains, and instructions to see GP first She then visiting her GP, got a referral to GI and IBS medication and no testing. GP didnt think was Crohns but referred due to her sister dx. She has bleeding and diarrhea. Appointment 8 October.

Returns to the GP practice for repeat of the IBS medications which are not doing anything. See a GP different GP under instructions from her mother and boyfriend to request blood tests. She doesn't have asked the GP orders bloods and stool tests.

She goes for bloods and vein collapses went they try. They had two goes. She is told to returned the next day after drinking plenty of water. They are success inn the second visit

Has her first dose of Pfizer on Saturday. GP rings has tried to book her a iron infusion but department at the local hospitals is not open on Saturday. She will try and book on Monday. Iron infusion is booked for Wednesday but they bring forward to Tuesday.

She had her infusion last Tuesday, nurses and nice but concerned about her blood pressure and want to know what her treatment plan was. She the number 40 was mentioned in relation to blood pressure.

I asked her to get copy of testing for the GP. She went about to gp for further IBS medication. R is my daughter with aspergers. The GP discussed the results with her, she couldn't the names of the different types. But the one that should be 50 if 1 and that should be 12-15 Is 7.

I am thinking:
Ferritin is 1
Hemoglobin is 7
Blood pressure is something over 40.

At this stage I don't increase iron intake in food or via supplementation will help.

Current dx severe anemia of unknown origin but mostly GI bleed.

I am trying to be calm but I am very worried.

 

[Scipio]

A hemoglobin of 7? Yikes! That's pretty severe anemia. Are they doing or planning an emergency transfusion to bring that up?

They are smart to look for an underlying GI bleed as the cause of the anemia, especially with a family history of Crohn's, but in the meantime how are they addressing the anemia?

 

[Maya142]

So sorry you might be going down the Crohn’s road again. We were also told that with a hemoglobin less than 8, a blood transfusion is required. Her Ferritin is also really, really low. Since she has Aspergers, is there any way you could attend appointments with her?

 

[crohnsinct]

Aw Catherine it is so nice to hear from you again but I am so sorry it is under these circumstances. Our docs transfuse under 7 so if that is really what the 7 is she is teetering. How is her energy? She takes after her sister if she is walking around doing her normal routine at an hgb of 7!

The blood pressure doesn't surprise me either given how anemic she is.

Did anyone order a fecal calprotectin? I would get that as soon as possible as the results can take up to a week and I would want this fast tracked.

Hang in there mama! The good news is you have been down this road before and you know the foe you are facing.

 

[Catherine]

Thanks for your replies. I am just heading into work. Am i essential office worker, so still getting to go into the office. Thanks for listening.

 

[Catherine]

A hemoglobin of 7? Yikes! That's pretty severe anemia. Are they doing or planning an emergency transfusion to bring that up?

They are smart to look for an underlying GI bleed as the cause of the anemia, especially with a family history of Crohn's, but in the meantime how are they addressing the anemia?

She has had one iron infusion, the plan is for the GI to manage the anemia. R will see him for the first time this Friday. I have actually meet him a couple of times. He was not more oldest daughter treating GI (he was the treating GI boss), but he did dx her.

We were also told that with a hemoglobin less than 8, a blood transfusion is required. Her Ferritin is also really, really low. Since she has Aspergers, is there any way you could attend appointments with her?

My understanding is under 7 in adults really bad. I am not sure playing the Asperger card would work. R is a university graduate, but I going to try. I have taken time off to attend the appointment with her.

We live in Melbourne, currently in 6 lockdown but setting also sort of records for all the wrong reasons. It has announced this week that our private hospitals need to cut the surgery rates to 50% to allow for a surge in covid-19 hospital cases. Our state recorded 1730 case announced today, they are expecting case to peak before the end of month. Going feel strange being out of our 15km travel zone.

Our docs transfuse under 7 so if that is really what the 7 is she is teetering. How is her energy? She takes after her sister if she is walking around doing her normal routine at an hgb of 7!

Did anyone order a fecal calprotectin? I would get that as soon as possible as the results can take up to a week and I would want this fast tracked.

I know 6.5 is considered life-threatening. Her energy seems ok, she still bounces quite a bit, but that's her tick. Her sister only got to the low 9s. She has had a urgent iron infusion last week. Both the nurses at the infusion centre and GP have told her the GI will manage iron infusions/anemia treatment.

R works as the swimming teacher when we are not in lockdown, which we have been for over 240 days over 6 lockdowns. She hasn't work much this year. We went in lockdown 5 on 15 July 2021, which was our third lockdown for 2021. Pools are one of the first things to close and the last things reopen. She was back at work for a couple of week, and her did mentioned that she had become very unfit over lockdown. Then we enter a short sharp lockdown 6, which was meant to go for 7 days, on 5th August 2021 which are still in.

Watching the news from overseas and COVID looks really bad elsewhere, but sure anymore the keeping us safe, if much better. The Victorian government has mandated vaccination for all essential workers which is everyone from medical personal to gardeners. Don't get me wrong I am pro-vaccination. I have feeling making mandated will cause push back. We will remain lockdown until we reach 80% double vaccinated. Although the national plan call for winding back restrictions at 70% double vaccinated.

We will wait to get a fecal calprotectin test, until after GI appointment. I don't want to risk an necessary trip to the GP at this time. GP seen to a hot spot for COVID cases. The GI practice in already situation in a COVID suburb of concern.

Thanks everyone,

 

[my little penguin]

How things go well with the GI…
Sorry you have to go through this again

 

[Catherine]

GI visit was changed to a telephone call.

Hemoglobin was 7.6 slightly better than our fear of 7. GI believe the iron infusion will increase hemoglobin by 1 a week. She was near the level where blood transfusion would be consider. He would like a avoid this in a young woman if possible due to the risk antibodies.

We have a colonscopy book in a private hospital in 10 days. We are lucky to have a booking at all elective surgery except level 1 & 2 have been banned.

In normal times he would have been done it in their GI suites/hospital. The public system was not a option as the GI wards have been made into covid wards. Hopefully she be treated as public patient in a private hospital and it free. If not she private patient and I don't know how much it cost as she doesnt have private insurance.

Victoria is current heading to toward 70% vacintined where we will able to travel 25 km from home. Hairdresser will reopen to 5 customers at time. But our covid cases continue to increase with over 1900 case today.

K is living in the city with friends. Outside our current 15 kms area. Her 15 km doesn't cross with ours. There are 2 positive on building level where she works. She has tested negative and is double vaccinated.

 

[Catherine]

Colonscopy was today.

The GI doesn't believe it crohn's disease, suspects Ulcerative colitis..

 

[crohnsinct]

Well given her sister has Crohns I will believe it when I see it. She wouldn’t be the first person to get a UC dx only to have it turn out to really be Crohns.

Sorry you are having to deal with the beast again.

 

[Catherine]

Hi All, still taking it in. I think this will end up being Crohns.

It come conversation today, that any children she had wouldn't stand a change. For background her partner has UC dx at 19, his father has severe UC.

I believe from memory if you have a sibling with Crohns, chances of other siblings developing Crohn's is approximately 34%, parents or children 10%.

What are your chance of two parent with UC having a child with UC or Crohn's?

What about one parent with UC and with Crohn's?

 

[crohnsinct]

Hmmm. Idk about parents to children but my girls are in a sibling study and so far that study is resulting in a 5% increased chance that you will have IBD if you have a sibling that has IBD. They have been reporting that statistic for the past 5 or so years. When they first joined the study it was 3% so it has gone up slightly.

 

[Maya142]

That's very encouraging!! 5% isn't too bad. I know for AS, if you have a parent who has AS and is HLA B27+, the child has a 50% chance of inheriting the gene. IF they inherit the gene, then they have a 20% chance of developing AS. So an 80% chance of NOT developing AS.

Before we had kids, my husband and I met with a geneticist. That might help her and her partner understand how likely it is, what the risks are etc.

How bad does the UC seem? Have they talked about meds? How's she feeling?

 

[my little penguin]

Second a geneticist
But big but
We saw one pre kids about a fatal inherited disease
Neither of us was a was carrier so we went on our Marry way
No history of crohns or juvenile arthritis or auto inflammatory conditions
One kid got all three -surprise
Life is full of them so even while trying to plan …
There is always a surprise

 

[Catherine]

She responding really well to medication. UC is behaviour is like it should with this medication.

Still awaiting test results to confirm dx.

 

[Catherine]

All results have come back appointing to UC not Crohn's.

Hemoglobin 11 and ferritin 23.

All symptoms have resolved.

 

[Catherine]

R continue to be well Her dx remains UC. She healthy and engaged and almost 28.