Endo and GI appointments

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upsetmom

upsetmom

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We saw the endo and GI today.

M had an MRI of her uterus last week. They found the uterus, which they said was normal but they couldn't find the ovaries. The endo believes they're there as she had some breast development before starting the estrogen patch. He also did some blood tests but somehow the results have been lost so we need to get them done again. At this stage he still believes she has ovarian failure with an unknown cause. So depending on the blood results he wants the gynecologist to do a laparoscopy to see whats happening. I asked could this be related to her crohn's but he couldn't answer me.

GI has finally agreed that M's crohn's isn't well controlled and he wants to do both scopes within the next 3 months. M's not very happy about the scopes. These poor kids.:( Also M had to have an iron infusion today as her ferritin had dropped further.
 
Ands her ferritin has dropped to 8 normal ranges are 15-200.
Her hemoglobin is still on the border of normal.
M couldn't tolerate the iron supplements. Hopefully now she won't be as tired.
 
I would ask why she needs the laparoscopy. What might they find? What could they find on laparoscopy that they can't see by ultrasound or MRI? Why does it need to be done now? Maybe there's a good reason but it's not obvious to me. I'd want the doctor to justify each test and certainly anything invasive.
Why did they do the MRI? Hadn't they already seen the uterus on ultrasound?

Your daughter has so much to deal with with the upcoming scopes. It would be good if she didn't have to have the laparoscopy too.

I read "Autoimmunity and the ovary
Between 10 and 30% of women with POF have a concurrent autoimmune disease the most common of which is hypothyroidism. In addition to the syndromes described below, POF has also been reported in association with myasthenia gravis, systemic lupus erythematosis, rheumatoid arthritis and Crohn’s disease"..................".The place of ovarian biopsy and pelvic ultrasound is restricted to research. " here http://www.endocrineonline.org/pdf box/pof.pdf
 
These are the tests hes ordered.

Estrogen, LH, FSH
anti ovarian antibodies

The ultrasound was ordered by the GP. But as they had limited views of the uterus they said to go ahead with the MRI. I totally agree, why do a laparoscopy if its not going to change anything.
 
Again, not sure why they are ordering the estrogen and LH, FSH is she is on estrogen.
The doctor seems a little test happy.The doctor could have held off on the uterus mri and done another ultrasound after she had been on estrogen for a longer time.
 
I don't know, to me it looks like this DR hasn't had a patient with crohn's and POF. He kept telling us of all the research hes been doing.
 
Sorry to hear there's so much happening at once. My daughter (also M!) had iron infusions and they made all the difference in the world. She went from being completely exhausted all the time to pretty much normal in a couple weeks (she had 4 infusions I think). She couldn't tolerate iron supplements either.
 
Maya,Thanks for letting me know it takes a couple of weeks. For some reason l was expecting instant results. I was wondering why she wasn't full of energy this morning.
 
I am sure the doc has plenty reasons for what is being done - since the doc knows your daughters complete medical history and is the one treating her.
I am sorry things are a little crazy.
I hope you get some answers soon so things can calm down.
 
Upsetmom - I just wanted to say :( :( :(.

I hope you see results soon from the iron infusions.

Hugs,

J.
 
:ghug::ghug::ghug: and more to you and your lass upsetmom.

I hope the iron infusions do the trick and M is soon feeling much more energised, bless her. :heart:

Just from our personal experiences with imaging (and their failures to provide a true and accurate picture of what is going on)…when things aren't matching up I don’t think it ever goes astray to have the doctor see for themselves what is happening. Whether that be scopes with the GI or a laparoscopy by the Gynae. It should allow the Gynae to manipulate enough to find the ovaries and see what stage they are. I would also ask that they have a look at the terminal ileum whilst they are there to ensure there is no full thickness damage occurring, assuming there is nothing obvious from the outset, which I hope there isn’t!

Dusty. xxx
 
I got a call from the endo this morning saying he'd spoken to the gynae and she advised against the laparoscopy due to M's ovarian reserve being low. He said to still get the blood done and continue with the estrogen. Now that no more testing is done l feel like this has come to an end..:cry:. Up until now l still had a tiny bit of hope. And l don't think we'll ever know why this has happened.

He went on to tell me that he forgot to explain to M that the only way she'd be able to have children is through IVF, and could l explain everything to her. I told him l'd cross that bridge when l get to it. :cry: Now l'm wondering how to tell her as the endo had previously told her there might be hope with the estrogen kick starting her ovaries.

Oh well there still hope, maybe a miracle might happen.
 
Oh my upsetmom. :( My heart goes out to you and your girl. :ghug:

I so hope that the oestrogen does move things along and further down the track it does indeed provide hope that she may fall pregnant naturally.

Sending much love and squishy hugs your way. Crohn’s is enough to deal with without adding this to it. :heart:

Dusty. xxx
 
Years ago, doctors would say that adoption would be the only option but now women with ovarian failure can carry an embryo made with their husband's sperm and a donor's egg.

In the future, somatic cell nuclear transfer with haploidization may be possible, allowing women without functioning ovaries to manufacture their own genetic eggs (that could then be used with ivf and inserted into their uteri). They have already made sperm from somatic cells- I saw a time article from 2009 (http://content.time.com/time/health/article/0,8599,1909164,00.html).

They can do it in rabbits. There is research in humans but I think it's in the experimental phase. (This mentions it for human infertility--> http://www.rbmojournal.com/article/S1472-6483(10)62056-1/abstract)

There's also something called in vitro activation that might allow women with primary ovarian insufficiency to get pregnant. http://www.cirm.ca.gov/about-cirm/n...funded-stem-cell-agency-leads-novel-fertility (see paragraphs 7,8,9 to the end)

so there is hope!

Unless she's demanding an answer now, you could wait for another doctor's visit for the doctor to explain and answer her questions. Whatever you think is best.
 
Upset mom,
I agree with xmdmom. It is not a conversation you need to rush into right now. There are so many new things being researched that who knows what is just around the corner. Has she seen an OB/gyn? It might not be a bad idea for her to see one and establish a relationship with one.
 
Upset mom, I'm so sorry that you've gotten this news!! I agree with above in that I don't think you need to rush this conversation. So much can happen in the next few years, so nothing will change if you wait and see a bit. :ghug:

I don't know if it's the same problem but a friend of mine developed only one ovary and doctors were concerned re the development of the other. At the time, they told her she'd have no issues with carrying a pregnancy but would have problems becoming pregnant. She and her husband went into their marriage knowing they may not be able to have children... 20+ years later, with no treatments for fertility, she has four kids! Two of which, twins, were a very happy surprise! So, while the issues may be completely different, she was given the same news as you (your daughter) but things did not turn out as doctors had expected. :) There's lots that can happen before your daughter has to cross this bridge. :ghug:
 
Kim we did see a gynaecologist but only the once as she's going/gone on maternity leave. But the endo is still communicating with her.

I don't think right now is a good time to tell her anyway as we have a lot going on with my dad at the moment, l don't need to stress her out more.
 
No advice but sending hugs upsetmom! What a difficult situation.

I hope that your daughter starts feeling better SOON and that the scopes are helpful:ghug:
 
Poor M has had the flu / virus for a few days and started to get stabbing in her chest again. The last time she had these stabbing pains was nearly 2 years ago. At the time our GP sent us straight to the ER as something was abnormal on her ECG. After lots of testing we were told it was probably a pulled muscle and they weren't too worried about the ECG. Yesterday our GP did another ECG and the same results came back as 2 years ago, so she's sent the results to a cardiologist to see what he says. I just hope these pains are caused from the flu.
 
She did have an ultrasound 2 years ago. It showed a bit of fluid around the heart but they weren't too concerned.

We have an appointment with the GP tomorrow. Hopefully the results will be back.
 
The cardiologist said we've nothing to worry about.

GP thinks the pain is from inflammation on the lungs,
she said it should settle on its own with rest and Panadol.

One less problem to worry about.
 
Ok, how they going to treat the lung inflammation?

Sorry I missed the rest of your post.:ybatty:
 
Can someone tell me if this is right.

Our arrival time is 11.30am, l've been told M can have clear fluids till 10.30am. From what l remember, last scopes it was nothing for 6hrs before scopes.
 
It doesn't sound right. I am not sure how long I had to stop liquids before the scope but I know it was only water on the day.

Do you have a number to call?
 
I did call.
When l first spoke to the receptionist / nurse ? She told me to give M a big dinner and a light breakfast in the morning. I told her that M had been on clear liquids all day and had the bowel prep and giving her food didn't sound right. She said well in that case don't give her any food but she can still have water or apple juice till 10.30. After l got off the phone l still though this doesn't sound right so l rang back only to be told the same thing by someone else. I still don't think it sounds right, so l'll only let M have a sip of water in the morning.
 
Upset mom,
By us we are told nothing to eat or drink after midnight the night prior to the procedure. That is because when you are under anesthesia everything relaxes and it is possible for food or water to go back up your esophagus and into your airway. It is called aspiration. If that happens it is very serious and can be extremely dangerous.
 
Agree with Kim. Don't remember S's prep exactly but Kim's point re aspiration is also what I've been told.
 
Good luck with the scopes:goodluck:
Hope everything goes smoothly!
 
Same here only a sip of water to take approved meds otherwise nil by mouth from the night before .

Good luck today
 
What a long day. We got there at 11.30 but didn't get in till 3.45pm as they were running late.

These are the finding that were written down for us.

The right colon was normal. Scattered areas of possible aphtous ulcers with overlying mucus from sigmoid to transverse colon. The terminal ileum appeared normal. Biopsies were taken with a cold forceps for histology.

The DR said these scattered areas with possible ulcers sometimes happen with celiac disease. We won't know till biopsies are back. But thinking back to the last scope 2.5 years ago l was told the same thing and it wasn't celiac but crohn's. It doesn't look like M's insides are any better today than they were 2.5 years ago.:(
 
How long has she on imuran now?

I wonder whether the celiac gene test may worth doing. If the test was negative that would rule out celiac disease.
 
She's been on Imuran for over a year.
The last scope they did biopsies to test for celiac, but it came back negative. And l think they checked her blood too.
 
The test I am referring to is not the standard blood test.

http://www.coeliac.org.au/diagnosis/


Gene Testing (HLA genes)

Gene (HLA) testing is a useful test in select cases when the diagnosis of coeliac disease is unclear. This can occur if the blood or small bowel biopsy results are difficult to interpret, or if adequate gluten was not being consumed to make the test reliable. It is performed on a blood test or cheek (buccal) scraping and can be ordered through your local doctor.

Over 99% of people affected by coeliac disease have the HLA DQ2, HLA DQ8, or parts of these genes. Therefore, a negative test for these genes effectively rules out coeliac disease. The gene test on its own cannot diagnose coeliac disease – only 1 in 30 people who have HLA DQ2 or HLA DQ8 will develop coeliac disease. A gluten free diet should only be started after confirmation of coeliac disease by small bowel biopsy.

As the gene test is not dependent on gluten intake, it can be used when people have already commenced a gluten free diet. If the gene test is positive, then a gluten challenge followed by small bowel biopsy will be required to test for coeliac disease.
 
Correct me if I'm wrong your daughter only had a colonoscopy.

Caelic disease is dx with upper scope, as they need to reach the start of the small bowel. What is her daily intake of gluten like. Eg much much is she eating.
 
She had both scopes done. He said the top looked good, but waiting on biopsies.

M does eat gluten, but I don't know her exact daily intake.
 
Sorry to hear it didn't look better than the last scope. Hope the biopsies ding take long
 
DS was checked for celiac multiple times before Ibd dx.
Most studies state about two slices of bread a day for a month .

Hope you get biopsy results quickly .
At what point do they consider changing meds ...
I know DS was changed for less and it made a world of difference.
I know the system is different just not sure how that even works
 
How long will biopsies take?
Perhaps you could try Methotrexate if they won't put her on biologics!
Thinking of you guys:ghug:
 
Our system is different, we start off with the mild drugs and work our way up. At our last appointment he said the next step was Methotrexate, but he wanted to do the scopes first to see what was happening. So waiting on results which should be back in 2 weeks.
 
Standard amount of gluten they like adults to have for testing in Australia is 4 slices of white bread.

We were also took our next step would have been Methotextrate.

Have her imuran levels been tested lately? Maybe there is an option in increasing the dose?
 
Imuran levels haven't been checked for a while. Getting it done next week. How long do the results take?
 
Thanks Catherine. In that case we better get them done today as our appointment is in 2 weeks.
 
Are you getting test done at the hospital where the test processed?

We had the test drawn on a friday, and it didn't get to the lab where it needed to be in time and blood had to be redrawn.
 
A lot of people are first dx with crohn's since it can mimic bechets .
Might be something to ask about
 
We had the follow up with the GI today. Biopsies showed M still has active inflammation everywhere, there's been no improvement since dx. This didn't surprise me as M seems to be in pain just about everyday. The plan is 6-8 weeks of Flagyl and if symptoms persist, and ESR is still raised we are moving on to Methotrexate.
 
Hey - I just read through your thread. I think it sounds like definitely time to move on from Imuran. I wonder why he's making you wait for the Flagyl to be done. Did they by chance say? My only thought is that like Imuran, MTX takes awhile to be effective.

Hugs,

J.
 
M usually responds well to flagyl but her symptoms return not long after stopping, so he wants to try a longer course.
 
I have one question. If M's symptoms settle on Flagyl does that mean the inflammation is also gone. I'm starting to get worried about this inflammation that has been present for at least a few years.:(
 
I think inflammation can be present without symptoms - I guess the only way you'd know for sure is to repeat blood work and scopes/MRE after she's been on Flagyl.
Just curious, why Flagyl and not Prednisone or Entocort?
 
I would still ask for a maintence med change since you already know Imuran /6-mp is not enough .
Flagyl could decrease the inflammation and give the Mtx time to work otherwise your back to square one.
Flagyl decreases it you wait for symptoms - inflammation comes back and then start flagyl again with Mtx -since Mtx is typically not enough by itself .

Can you call the gi ???
 
My daughter also has low bone density, so we're trying to avoid steroids for now. Sending hugs:hug:, it's so hard!
 
I spoke to the GI's student assistant and she said we need to see if Flagyl works before we move on to anything.
 
M has been on Flagyl for 4 days.

Last night when she went toilet there was a lot of blood. She has previously had blood before but only a little bit when wiping. I thought the Flagyl would have started working by now.

I'm expecting a call from the student GI today so l'm going to mention it.
 
Sending so many hugs:hug:
Are they waiting for Flagyl to work before deciding on maintenance meds?
I know you said bone density was an issue, but would Entocort be an option since it's less systemic?

My daughter also has low bone density (but within normal limits) and Entocort is on my list of questions for our appointment next week!
 
I know your step is Mtx. You may what to ask want your treatment step is after that.

I know you doctor is trying to avoid the use of pred but is pred does be come necessary you will want that course to count forward the qualifying process for remicade if it ever becomes necessary in the future.
 
Maya they are waiting to see if the Flagyl works before deciding anything. Entocort has never been mentioned, it's something l'll have to ask about.

Catherine he said our next step after MTX will be Remicade, but to qualify we had to try TMX first.
 
M's still bleeding, but she tells me its not as bad as when it first started. I've asked her to take a photo but she keeps forgetting. She's also getting a burning pain near her right hip.:(

We get the results back on Monday.
 
Just an update.

After a lot of tests our endo has come to the conclusion that my daughters ovaries stopped working due to her crohn's disease.

M's symptoms came back when she stopped Flagyl but our GI has decided we are adding 50mg of Pentasa and waiting another month to see what happens. I don't see what an extra 50mg of Pentasa is going to do.

M recently got her drivers licence and hasn't stopped going out. Usually she stays home all the time, so this is good to see.
 
I think all specialists should have to live with a child for a year who has the disease they treat.
Then maybe the wait and see would be shorter ...
 
Thanks for the update upsetmom. :ghug:

Congratulations to M on getting her licence!
smileys-car-229413.gif


upsetmom said:
After a lot of tests our endo has come to the conclusion that my daughters ovaries stopped working due to her crohn's disease.
Click to expand...

Bingo! All the more reason now for the GI to stop dancing around the edges and get a decent management plan in place! Anything else is just a bandaid solution and not effectively treating the root cause. :yfrown:

Dusty. xxx
 

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