CT scan - some thickening of proximal duodenum?

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Hope the neurologist can maybe help piece together the puzzle. Crossing fingers her new symptoms don't get any worse. Have a good time in Sydney
 
Thanks guys, she got Neurologist appointment in London through today for 25 June. Swindon should call her on Monday too. Her face is still very numb, and she dribbles! Which she is not impressed with but the droop has definitely improved
 
Hi Niks,
I was just thinking of you guys. Sorry to hear about this new symptom. Glad she got the appt though. Have a great time in Sydney!
 
Quick update!

Jaime through her flare and doing great at the moment, really hoping that it lasts longer this time. She's started doing a Nursing Mental Health Course and so far coping well.

Her tilt table test was interesting, however didn't prove anything much. She passed out twice, once with fast breathing exercises and the other time being tilted at 90 degrees. This apparently only showed disassociated collapses.

She is going to an appointment in Oxford tomorrow for training on Peristeen irrigation, this was recommended by consultant in London, and she is a little dismayed that this has only just been arranged for her. This can be done daily and at home, so hopefully will help when she gets chronically constipated.

She has had several episodes of rectal bleeding, but no one seems bothered about this.

When unwell her main problems are holding down food and fluid, chronic constipation and pain. When we were last in London I had to borrow a wheelchair as she was unable to walk more than a few meters and was in so much pain, was in and out of consciousness. The consultant was horrified that she still hasn't got a pain management team on board, (she still doesn't).

She has had several bad kidney infections, with a lot of blood in urine. And also another kidney stone. Urology just put this down to her bowel dysmotility, as they say everything is connected and has a knock on effect.

But.... At the moment all good. Very little pain, bowels working better and able to eat and drink!!! Really hope it lasts this time!

If only we could work out what triggers the gastroparesis flares, then maybe we could try to get on top of it completely!!

Hope you and yours are all doing okay!!

xx
 
Hi Niks!
Great to hear from you. I am glad she is feeling good right now. I wish you could figure out what is causing these flares as well. Fingers crossed that you get to the bottom of it and that she continues to have good days!
 
Niks,
I am going to try to speak with some others who have gastroparesis and see if we can get some advice for you and Jaime and see if we can figure out some ideas of what her underlying diagnosis may be.
Can you list all her symptoms for me that she has ever had since all this started?
 
kimmidwife said:
Niks,
I am going to try to speak with some others who have gastroparesis and see if we can get some advice for you and Jaime and see if we can figure out some ideas of what her underlying diagnosis may be.
Can you list all her symptoms for me that she has ever had since all this started?
Click to expand...

HI Kim

She started with Abdo pain at 15. She had appendix (not the problem) out and then was referred to gynae.

Numerous tests, and finally exploratory laparoscopy showed no endometriosis as thought, but inflamed bowel.

Symptoms subsided, so she was treated for IBS from GP.

She had rectal bleeding around 17/18 and was referred for colonoscopy, was given prednisolone foam for proctitis. So second diagnosis was proctitis. Soon after this her pain got much worse, she has severe abdo pain and she started vomiting. She was (mis) diagnosed with, crohn's disease and then coeliac disease. Coeliac from biopsies, which showed 'coeliac tendencies'. Gluten free did not help at all, so they have said she is not coeliac.

Since she has had chronic constipation, having to used citramag to clear bowels and even this doesn't always work and can vomit every thing she eats and drinks, and her pain is so severe, she often passes out. She also has a lot of urine/kidney infections and bleeding, urine retention and stones. This is apparently due to bowels being so congested.

She has 2-3 months of severe symptoms, followed by 1-3 months pretty much symptom free! this has been the pattern for the last 3 or so years.

Her gastroparesis was finally diagnosed after many years of IBS diagnosis from the stomach emptying scan. They decided she had moderate Gastroparesis, however she was at the end of a flare, and I am sure if it had been done a week or two earlier she wouldn't have tolerated the test at all.

Thanks for your help!!

Nikkie xx
 
Niks,
I have started doing research for you and one of the possibilities I have come up with that was mentioned on the gastroparesis forum is mitochondrial disease.
Take a look at the link, people do not have to have all the symptoms mentioned just some of them and she certainly fits the bill for some of them.
http://www.mitoaction.org/mito-faq#symptoms
 
I'm glad to hear she's bouncing back. I remember when she was having such awful problems and wasn't taken seriously...
 
Mehita - None of her scopes or tests showed crohn's. The diagnosis was given when she was admitted to hospital, but her consultant said it was wrong.

Thanks Kim! Will take a look!

X
 
Hmmm, she doesn't really fit into mitochondrial disease. Also it says that siblings are 100% likely to have the same condition. Both her brothers are absolutely fine.

I am really hoping the irrigation will keep her bowels going, which in turn will help with the gastroparesis! But we'll see :D

x
 
Niks -- If they have diagnosed her with gastroparesis, what are they using to treat it? There are a number of medications that might help -- Erythromycin, Bethanecol, reglan and domperidone are all used. My daughter also has gastroparesis and has tried all of the above (except reglan which scares us!). She's doing better now on Erythromycin and has a GJ tube -- she cannot keep her weight up without tube feeds.

There is also a disease called Chronic Intestinal Pseudo Obstruction which seems to have some of the symptoms your girl has.

https://rarediseases.org/rare-diseases/chronic-intestinal-pseudo-obstruction/

In individuals with CIP no such physical obstruction is present, hence the term pseudo-obstruction. Common symptoms include nausea, vomiting, abdominal pain, abdominal swelling (distention) and constipation. Ultimately, normal nutritional requirements cannot be met leading to unintended weight loss and malnourishment. CIP can potentially cause severe, even life-threatening complications.
Click to expand...
 
Niks,
This site says 25% of siblings will have it but also from what I understand is that siblings can carry the genes but be fine.
But what Maya mentioned also fits somewhat except for the fainting part, I didn't see that mentioned. I definitely think she has some rare type of disease. Is there are rare disease center somewhere by you?
 
Is there any way you could get her to a motility center? I know of some in the US but none in the UK. There are many tests they could do that could shed some light on why she gets so sick.

Colonic transit time (Sitzmark) study
A colonic transit time (Sitzmark) study is a simple but effective method of studying how well the bowel propels food along. Normally, it takes only a little time for food that is eaten to progress through the small intestine into the colon. It then may take longer periods for the remaining material to pass through the colon and to be expelled as stool. There are several ways of performing the study. In some laboratories, for example, three capsules containing small markers are swallowed, one on each of three successive mornings (Days 1, 2 & 3). On the following day (Day 4) and three days later (Day 7) a plain x-ray of the abdomen is taken. All of the markers seen on the x-rays of each day are counted and added together. This number is the total transit time. This test is very useful for detecting different types of constipation.
Click to expand...

http://www.aboutconstipation.org/site/symptoms/colonic-inertia
 
Sooo... Thought I'd update on what is going on with Jaime.

She started doing Peristeen irrigation. For an entire 3 months this worked like magic! No vomiting and able to irrigate well, every other day. Some pain, but generally did really well. Then January it just stopped working.

She was in a terrible state, with no bowel sounds and absolutely nothing moving through. She stumbled across a cororectal surgeon who was absolutely amazing! Referred her for transit study and barium scan. The same time during this admission she saw a surgical emergency doctor who couldn't understand why on earth she had been left with osteoporosis with no explanation. He did a blood test, which has clearly never been done before. Her PTH level was extremely elevated!! Symptoms of this are constipation, kidney stones, osteoporosis, reflux, headaches, just to name a few!!

She has now got an appointment to see an Endocrinologist.

Anyway we went today to get results from transit study. ALL of the markers were still there! So they are starting applications for funding for a bowel simulator. This won't be a cure, but will hopefully give her time before bowel surgery. It could take months before funding is agreed, but at least something is being done!! Thank goodness for this Surgeon. I really think we would still be going around in circles!!

Hope you and your kiddies are all doing well!

Nikkie xx
 
Very glad you finally have some doctors taking things seriously and that they are finally figuring things out! She has been to long without proper care. I hope this leads to treatments and her feeling much better!
 
Hi Niks,

So glad you came across a good doctor, very rare in the nhs these days!! I had a high PTH too. From what I gather a high PTH can be caused by the parathyroids themselves and if that is the case it's a minor op to remove them and if like in my case it's due to malabsorption I have to take calcium and have my urine and blood calcium levels checked on a 6 month basis to make sure I'm getting enough.

Really hope all these tests give you some answers, all the best.
 
Wow, thank goodness she got to see that surgeon. Fingers crossed the funding doesn't take too long. Such a relief when things actually get done, hope all this helps her a lot.
 
Niks,

Wonderful news! So glad to hear that someone seems to finally "get it." I really hope you have some good answers soon.

Cheryl VT
 
Niks, what a relief to finally get some answers I'm sure! I hope the PTH thing leads to a long-term fix for her. I'm glad she had a 3 month reprieve with the Peristeen. Thanks for the update.
 
Hi! Long time since I've been on here, but thought some of you may want to know what's happening.

Jaime is still really struggling. The funding for the sacral nerve stimulator was refused!! ARGHHHHHHHHH! She was heartbroken and felt that her life would never improve.

I did a fundraising page for her to trial the stimulator in November and managed to raise the full amount £2700 in just 24 hours, incredible. She had the trial for 3 weeks at the end of November and beginning of December. It worked better than we could have ever dreamed. She was urinating frequently (normally once a day if she's lucky - I didn't even know this!). Her bowels started working pretty much immediately and within 10 days she was able to empty her bowels daily without irrigation. This to her was a miracle! She was able to go to work daily and she also was going out socially. She said she felt 'normal'.

The stimulator came off much to her relief (as it was stuck on her buttocks and she could not bath or shower throughout) on 20th December. She was able to have a Christmas feeling fairly well, but has been going rapidly downhill ever since. It seems that her bowels have just stopped working and she has had severe pain, passing out, vomiting, chest pain and last week was admitted because she had really blurry vision and lost the feeling in her lower legs. This is new. GRRRRR. My first thought was B12. They tested and said it was low 102 - but not low enough to cause these issues and not low enough for infusions. I had a big arguement saying this had happened before with numbness and confusion when her level wasn't considered that low. After three days of being in hospital they did another test to see how her B12 absorbs (I can't remember what they were called, there were two and they had to be sent off so didn't get results) - She was then prescribed B12 infusions, so I guess someone else thought this could be a problem.

She has had to have physio and is able to walk with a crutch but her legs go into spasm when she is walking, this seems to be slowly improving.

We have re submitted the funding application with the evidence that the trial worked, but still no guarantees that this is going to be accepted.

8 years later and still really no further forward, she is in fact much worse in herself.

I really hope you and yours are doing better than she is.

Hopefully next update will be good news!!

Nikkie xx
 
Really sorry to hear things have gone downhill again. Wish they could come up with something! Hope they give her the funding for the stimulator now that you have some evidence. Thinking of you both
 
My mother has a stimulator. It has been life changing for her. I hope your girl is able to get one as well. Thanks for updating!
 
Dancemom - does your mother have it for slow motility? In the U.K. They will happily find for incontinence, but they say that not enough research ahead been done for chronic constipation and slow transit xxx
 
Niks said:
Dancemom - does your mother have it for slow motility? In the U.K. They will happily find for incontinence, but they say that not enough research ahead been done for chronic constipation and slow transit xxx
Click to expand...

She had incontinence and constipation due to trauma during my delivery. She suffered over 30 years before receiving the stimulator. They did very little testing...just a colonoscopy (which was normal).
 
I'm really happy that she found something that could help her for awhile. I'll pray that the funding goes through this time. Weird that she crashed after. I wonder if there was any connection. Praying for long term solutions and hope for her.
 
Nikki,
I am so sorry to hear about Jaime. I was just wondering how she was so am glad you posted an update. I am really hoping she can get the stimulator.
We have been going through so much as well. They think Caitlyn might have something called Ehlers Danos Syndrome. We have a million doctor appts over the next few months. It is just crazy.
 
kimmidwife said:
Nikki,
I am so sorry to hear about Jaime. I was just wondering how she was so am glad you posted an update. I am really hoping she can get the stimulator.
We have been going through so much as well. They think Caitlyn might have something called Ehlers Danos Syndrome. We have a million doctor appts over the next few months. It is just crazy.
Click to expand...

Sorry to hear she's not doing well. I hope you get the answers you need soon. :hug: xx
 
CarolinAlaska said:
I'm really happy that she found something that could help her for awhile. I'll pray that the funding goes through this time. Weird that she crashed after. I wonder if there was any connection. Praying for long term solutions and hope for her.
Click to expand...

Hi, thanks for reply. The trial was a temporary stimulator that was stuck to her. A tiny wire and electrode was inserted through her skin and stimulated the sacral nerve. This triggered her bowel to contract and her bladder to empty properly. Once it was removed 3 weeks later her bowels stopped... Was expected. xx
 
CarolinAlaska said:
Whatever happened with the elevated PTH and seeing the endocrinologist?
Click to expand...

He said it was a 'freak' result!! The next levels were within normal range.

Her bowels are the main problem. They were very slow, but now they just stop, with no bowel sounds. Her gastroparesis is obviously going to be bad, with nothing moving from her stomach if her bowels can't move, so still vomiting lots. For me, if they can get her bowels moving, then her stomach will follow, I could be wrong.

The only thing that helps (not including the stimulator), is being admitted to hospital, given IV anti sickness (nothing else touches her), and IV pain relief, and then 8-10 picolax/citramag. They normally try 2 twice a day. She does still take them at home, but finds it difficult to keep them down.

I just wonder why her bowels have completely stopped working. It is like they just grind to a halt. She still gets rectal bleeding and mucus from time to time.
 
Niks,
Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.
 
Yes, it is baffling. We must not lose hope. I hope that Jaime is finding ways to be strong through all this. Let her know we are cheering for her and hoping/praying the NHS will approve her stimulator quickly!
 
kimmidwife said:
Niks,
Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.
Click to expand...

She doesn't even have a Consultant anymore, she isn't 'under' any specialist, it is all so frustrating. Gastro at Oxford pretty much ditched her when he realised that her bowel doesn't work, which is something that I'd been asking to be tested for years! She moved on to a Surgical Colorectal Team, but since the stimulator was refused, she has also dropped her. She has her GP and the private Doctor, who did the trial....

I am going to see if I can find a specialist, thank you Kim xxx
 
Jaime called me today, hysterical. She asked if I was sat down, I thought someone had died!! She had a call from her nurse saying that her funding has been approved and she's having stimulator fillted on 17th March! I can't believe it!

Wooooo hoooo!! After all this time, and it's so close now
:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::luigi::luigi::luigi::luigi::luigi::luigi:
 
That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
 
Mehita said:
That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
Click to expand...

Yes she's back under colorectal surgeon. She's a little apprehensive, when she was initially told about this procedure, she was told it would be done under general anesthetic, but she's having it done under local. It takes about an hour and a half. When they put in the temporary stimulator, they needed her to tell them when she was feeling sensation and where, so maybe this is why.

Thank you all for your kind wishes. xx
 
Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
 
Niks said:
Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
Click to expand...

My mother has had to adjust her settings as well. You'll find what works.
 
Hi all, hope all going okay with you all.

So.... Still not found right setting, but she's working through them for a month at a time so could take some time.

Urine retention getting worse, and having to self catheterize, however tubes so small had to have them stretched (again). This is the exact wording from the letter from the urologist, received today....

"Jaime underwent cystoscopy today and I am sorry to let you know that she has a large capacity bladder and the bladder looked moderately to severely floppy. Her urethral was found to be modestly tight and i performed a dilation. I plan to see her in 6-8 weeks time and we will take it from there."

I don't like "I am sorry to let you know" - but surely can't be dreadful or he would have seen her sooner?

So confused, does anyone have any experience of these symptoms and have any idea what it could be. Could it all be connected?

Many thanks in advance

Niks
 
I don't think she has! It's just frustrating that there are more and more things that are going wrong for her.

Thanks for your reply I will check this out xx
 
Latest update.

Jaime has had a really scary time. Nothing has really improved. At the beginning of February she woke up with Bels Palsy - face dropped (third time). She was really struggling with the pain from bowels so got admitted to Swindon. Fluids, IV anti-sickness and pain relief - was sent home to take her picolax. She thinks she passed out in the bathroom but the next day she had slurry speech, this got worse throughout the week, to her not knowing where she was, not able to recollect the right words and then only being able to say a word or two together, she also was very wobbly on her feet.

Took her to Oxford, didn't know who should see her, ENT, Gastro, Neurology, Medics. After being up there all day felt she had bels palsy and concussion. Because she 'fell in the river and hurt her head' (sentence took a very long time for her to say). She was sent home. I wondered if it was low B12 so had her GP send her for tests at Swindon, who also felt was concussion. B12 came back fine.

Had a letter to review bels palsy in Oxford last Friday. Neurologist said that you can't get bels palsy more than once, unless infection related.
Which hers isn't. They did lots of bloods including some genetics, and she has nerve conductor tests next month. She is weaker down left side and feeling is not the same on left side.

Jaime just wants to know what is happening to her, if she can do anything to improve all of this and if she will get better/worse etc. It is so frustrating, I hope all of you are doing better xx :heart:
 
Oh Nicks,
I am so sorry to hear. I was just thinking of you guys. I hope they get this figured out. She needs a complete neuro workup. I hope they do one. Pelase keep us posted.
 
J not been great, really not having any good days.

She has been getting a lot of rectal bleeding, her London Consultant requested all tests sent to her last November and an urgent colonoscopy, which she still hasn't had. :ymad:

She went to see her pelvic floor team to get programmes changed on stimulator, and we talked through all of this. We mentioned that she had seen neurology and some genetic testing. Her nurse looked on the Oxford system and found a letter dated from the end of May saying that she did 'indeed have a variant of MNGIE'.... :ymad: I have a copy of this, this letter was referring her for further testing and to a Mitochondrial specialist at a different hospital in Oxford.



This is now ridiculous. Looking at this it is a genetic degenerative disorder, it is not a good diagnosis. I am gobsmacked that this is still in limbo and no one has contacted her for further testing to confirm this.

I have emailed the contact on the letter, but pretty furious :ymad::ymad::ymad:

Anyone heard of this????

Hope all okay xx
 
Hi

Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis. Jaime has Mitochondrial Disease, this is degenerative and affects all muscle tissue. Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..

Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words. Luckily this hasn't lasted too long.

She has had absences and one full seizure, which she is finding very scary. She has a very good Mitochondrial team, who she is able to contact at any point. Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis. There must be more without diagnosis!

Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!

xxx
 
Thank you for posting a diagnosis. I am so sorry that it took such a long time to get an answer. I remember reading your posts and seeing how awful she felt and how hard it was, at times, for her to get doctors to take her symptoms seriously. It would be good if those prior doctors could know about this diagnosis.

I am glad she finally has an expert team who is accessible and I wish her all the best.
 
Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms?
I'm glad she has a great team of doctors - I hope they are able to help her.
 
Niks said:
Hi

Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis. Jaime has Mitochondrial Disease, this is degenerative and affects all muscle tissue. Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her..

Her main symptoms are still gastro and pain, but she her eye sight is starting to be affected and she has weakness down the left side with stroke like episodes at times causing bels palsy like symptoms and some temporary numbness, with slurred speech and also sometimes not being able to make sense of what she needs to say, not being able to put together sentences or find the right words. Luckily this hasn't lasted too long.

She has had absences and one full seizure, which she is finding very scary. She has a very good Mitochondrial team, who she is able to contact at any point. Just thought I'd let you all know, in case there is a similar case where it is so difficult to get a diagnosis. There must be more without diagnosis!

Sending love to all of you who supported us throughout the early days, with ideas and suggestions to help!

xxx
Click to expand...

I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.
 
I also remember what a long and hard time she had, dealing with the symptoms and getting no answers. I hope having an answer can help with treatments! And that her team can now respond to her symptoms and help alleviate and manage them.

While not the answer you would've wished for, I hope having a diagnosis also helps you in supporting her. Lots of hugs...
 
Carol, I hope that the new dx for Jaedyn helps explain her struggles too and help both you and her in alleviating the symptoms! Sending you luck in finding a new specialist who can help Jaedyn feel well!!
 
Wow Mama's! You both have my undying admiration. I remember both journeys as it was yesterday and how much both of your girls suffered.

I also hope that having a diagnosis and the right physicians in place to help care for them brings some peace and comfort to you all.

Thanks so much for stopping in and updating us as your stories and outcomes will definitely help others along the way.
😘
 
Maya142 said:
Your poor girl! I remember reading her story just as I joined the forum. I'm so sorry she had to suffer for so many years without answers - even with such serious symptoms. How is she feeling now, in terms of the pain and her GI symptoms?
I'm glad she has a great team of doctors - I hope they are able to help her.
Click to expand...
Hi

Her GI symptoms are still the worst of everything, this is where she gets most of her pain, which is the main cause for her getting admitted to hospital, to get pain under control. Her main frustration is with the Doctors not understanding this, she is really hoping that with the Care Plan that the Mitochondrial team are putting in place that this will be easier in future.

xx
 
CarolinAlaska said:
I'm so sorry to hear this. It sounds very frightening. I'm sorry she had to get so bad before she got someone who sould take her seriously. Jaedyn has a diagnosis of Ehler's Danlos now, but her specialist who knows EDS has moved out of state.
Click to expand...

Really hope you find someone to help Jaedyn soon! It is so difficult when medical professionals don't understand how to help xxx
 

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