CT scan - some thickening of proximal duodenum?

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Oh! They found NO evidence of Coeliacs Disease! They are pretty sure that she does not have this, but have advised to stay gluten free for the time being.
 
I just can't imagine the frustration Jaime must feel combined with the pain, my heart just aches for her and you. I hope the new med work to relieve the pain and my thoughts and prayers are with you both!!
 
Hugs Niks
I wish there was an easy answer
Hope something points them in the right direction soon.
I do know for some it takes a little longer than they would like
At least this Gi seems to be looking still
 
WOW! I'm sure those results were a huge let down. There is nothing worse than feeling "stalled" in the process.

So, it sounds like they still think she is constipated?!? That just seems crazy to me. Can you send a message and ask if that is the case, and upon what they are basing that decision? It's the only explanation for the prescription they gave her. Given what she has been doing...it just doesn't make sense and some of that stuff is pretty toxic if taken in too great a quantity.

I'm going to suggest the Kondremul Oil again. It is a marshmallow flavored mineral oil. It will coat and lube everything. Once she is passing salad dressing into the toilet...I DARE them to say she is still constipated. Grrrrr. I'm frustrated for you!

Here's a link to some information: http://www.drugs.com/cdi/kondremul-emulsion.html (Note: Gus took it orally, not as an enema.)

Hugs to you! Hugs to Jamie too!
 
my little penguin said:
Remind me was a pill can still on the table ??
Click to expand...

no MLP they think the MRE was enough! I don't quite know what they want to do next!! I think she's stumped them! He DID say there was evidence of inflammation /ulceration previously . But not now!!! Still could be slow motility, but would that cause this horrendous pain ?

Cheryl - Thank you about Kondremul oil!!! Will be ordering some today!!! We are going to see how she goes , but if no improvement or any worse we will be using that pager!!
 
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U must be so frustrated , will they be re scanning when she is totally off steriods , she seams typically ibd to me all t physical signs in t bowel , ulcers , inflam , narrowing , its flipping england I swear theyt have a new rule not to diagnose ibd they musty b short on funding in this area !! Grrr xx big hugs to u and ur jaime xx
 
fosterschick said:
U must be so frustrated , will they be re scanning when she is totally off steriods , she seams typically ibd to me all t physical signs in t bowel , ulcers , inflam , narrowing , its flipping england I swear theyt have a new rule not to diagnose ibd they musty b short on funding in this area !! Grrr xx big hugs to u and ur jaime xx
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I don't think they have any plans!! :ybatty: It is so frustrating. This amount of pain is not normal! She didn't have it anywhere near this bad when she was really backed up, but was vomiting continuously.
 
She was in agony this morning but took more oramorph. She shouldn't have to suffer this much pain! GRRRRR. Since doing enema and taking oramorph it has settled.

She was so fed up yesterday, because she just wants to know what is wrong with her and just sort out the vomiting and pain!!
 
How very frustrating! How long will they think oramorph and enemas are a solution, I wonder? 6 weeks seems so long for next appt with this level of pain. I hope Jaime starts to feel better.
 
Does anyone know where or if you can get Kondremul Oil in the UK!? Can't find anywhere that will ship over :ack:
 
Do an advanced search and restrict the region to United Kingdom so you don't have to wade through all the American sites. There seem to be a few UK based online shopping sites that list.
 
Niks said:
Does anyone know where or if you can get Kondremul Oil in the UK!? Can't find anywhere that will ship over :ack:
Click to expand...

If you want to private message me your address...I'll go pick some up at our pharmacy and ship it to you!

Cheryl
 
Hi Niks,
I have been off the computer for a week on a mini vacation so I am just catching up. I am so sorry to hear no answers. I am not surprised that her insides looked good on MRE with her having been on steroids so long. Is she still on them (I dont remember)? IS there any plans to rescope?
 
Hi Niks,

Sarah's MRI after her first course pred also showed a completely clear large bowel. Her small bowel was also didn't have much inflammation.

So yes pred could be the reason nothing show up.
 
Kim - she tapered off and finished beginning of last week. I really don't know what plans are, I just don't know how she can carry on in this amount of pain! She was almost better off completely blocked up and vomiting!!!

Cheryl - thank you so much. Have ordered some, if I have problems will take you up on that!

Catherine - was this before or after diagnosis? It is all so frustrating!!! I don't know what to think anymore :ybatty:
 
Niks,

Keep video taping the pain, and keep peppering them with phone calls. Maybe this is a "squeaky wheel gets the grease" type of thing. If you think the pain is getting worse, then follow your instincts.

Brainstorm: Have they checked her ovaries and/or any other gynecological issues? I'm sure it has nothing to do with anything, but maybe something is pushing against her other organs? Endometriosis? Just a brainstorm.

Hugs. You're doing a great job.

Kimberly
 
Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)! Things seemed to settle. Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel. Again things settled, so nothing further investigated!

Here we are again. This is the longest time she has been sick for, doesn't seem to be letting up this time x
 
Niks

It was after dx, but have two MRI to compare. One before any treatment which showed lots inflammation in the large bowel and second one after the use of pred and aza which showed no inflammation in the large bowel or valve.
 
Niks said:
Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)! Things seemed to settle. Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel. Again things settled, so nothing further investigated!

Here we are again. This is the longest time she has been sick for, doesn't seem to be letting up this time x
Click to expand...


The inflamed bowel they saw. It would have been the outside of bowel?
 
Niks said:
Kimberley, her initial investigation back when she was 15 went down the gynae route, nothing showed, appendix removed (healthy)! Things seemed to settle. Then a year later the same sort of flare, checked by laparoscopy for endometreosis, nothing seen with ovaries, but she did have an inflamed bowel. Again things settled, so nothing further investigated!

Here we are again. This is the longest time she has been sick for, doesn't seem to be letting up this time x
Click to expand...

How about vitamins Nik? Does she take D3 and fishoil? Probiotics ever? Magnesium citrate as David suggests too? Since I upped my Vit D3 and got Mag. citrate, wow what a diff. in my pain level and flares! Hope she is trying this too.
 
Catherine said:
The inflamed bowel they saw. It would have been the outside of bowel?
Click to expand...

Yes it must have been!

CT scan and barium (although got stuck and didn't move for over an hour and then she vomited) also showed inflammation. MRE recently showed none of this.. As has already been said may be because of Prednisolone since October.

She thinks the enemas are causing bloating and gas, which will be painful, but if she doesn't have Seems like a vicious circle!

Teresa - her B12 came back really low in October and she has had loading dose of shots, but no nothing else, her magnesium levels were pretty high though..
 
I can't imagine living like she's had to these last few months and I especially can't imagine watching my kid have to live that way! I guess you have no choice but to muddle through and keep pushing for answers. God bless you Niks! Praying for some relief soon for Jamie!
 
Just wanted to send a hug your way, and really hope you can get some answers soon.

I really feel for you both xx
 
Ohhhhhhhh! Jaime vomited badly at work today and then collapsed, out cold. :eek2:

They called an ambulance and the paramedic wanted to take her to A&E in Swindon, she persuaded him to call Oxford and they told him they would have a bed waiting for her.

So in a nutshell, been in Oxford all day, just got home at 1.15am! They wanted to keep her but she insisted that she wanted to come home. Have attached her x-ray. She is even more backed up than she was before, WITH all the laxatives and enemas! How can this be possible GRRRRR.

They have sent her home with the same stuff that you have for a colonoscopy prep. She wants to wait until tomorrow to do it, rather than be up all night. It is looking much more like motility, causing constipation don't you think??

Have been told to ring at any time day or night if there is any change or she gets worse!
 

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Oh there was nothing at all in her lower colon, which is what has happened before. She seems to be backing up where she has the really bad pain. Now is that causing her to back up or is the backing up causing the pain? Seems to be a chicken and egg situation x
 
I hope the scope prep gets her moving Niks. It's bound to help alleviate the pain if she can clear all that out! Good luck!
 
Kimberly27 said:
Is there a clear distinct "line" where the back-up begins? Maybe they can compare it with the x-ray from last time and look for clues?

Hugs.

She must really be on their radar now! That's a good thing.

Kimberly
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Her lower colon is always clear. It seems to be backing up where she gets the severe pain! On xray there is a big mass on left lower abdo, but even without the xray being explained we could see it all the way through her bowels and really clearly top left! This photo isn't as clear as the actual x-ray but gives a bit of an idea! Poor girl.
We both slept in this morning. She has just taken the Citrameg, with 50mg lactulose and 4 senna as directed! Surprised she wasn't sick! But fingers crossed this gets her moving.

Surely she can't keep doing this? Had next clinic appointment through for 21 May! We'll see if she can really hold on this long.

MLP - When I have asked about this they seem to think that there is no point as her MRE was clear! When I said yesterday that she's been on Pred for so long is this why her MRE was clear, they said NO! He said that she would still show signs if she did have an IBD. So maybe it is just motility? If it is this seems hard to sort out though.
 
OMG poor Jaime :( and poor you :( I hope you get some answers soon. I would be pushing for them to get you in soon!
 
Niks, I don't get how they can possibly think it could be anything other than IBD...

Regarding the constipation, it is a well-known side effect of opioids and oramorph is a huge opioid. You've got to wean her off of that stuff. If she is constipated and it is causing so much pain, you can't give her something that will continue to exacerbate the problem (or perhaps in her case continue to make everything seem be to from the constipation, but really is it from the opioids?). I totally feel for you and your dear daughter. I will pray that the sources of her symptoms will be eliminated so the real cause of her problem and pain will be made clear. <<<Hugs!>>>>

PS. Chronic opioid use also leads to more pain and anhedonia (a general feeling of being unwell that makes the person crave more opioids to help them feel normal).
 
I hate saying this because I really hope you find a quick answer that gets her feeling well again soon.

Niks if the pain/pain killer use has been going on for more than 3 months. I'd consider asking for a referral to a pain clinic. Carolin is right the pain killers could be contributing to the issues as long term pain killer use has lots of side effects.

That definitely doesn't mean I'm saying stop hunting really hard for answers that are going to make her better, but in the meantime a pain center might be able to help her to cope better with the pain levels without needing the current level of pain medications.

If you get a referral to a pain center and the problem gets resolved in the meantime, you can always just cancel the appointment.

On the NHS site they say
http://www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx
- Chronic, or long-term pain, is pain that has lasted for three months or more.
- If you have long-term pain it might be as a result of a diagnosed medical condition, a painful condition that is not yet fully understood

So having an understanding of what is wrong does not seem to be a prerequisite.
 
Oh my Niks, your poor girl and poor you having to watch her suffer so. :ghug:

Sending loads and loads of love and luck and you soon have answers!!!

Dusty. :heart:

PS. I don't agree that Prednisone would have had no effect on the MRE results. :(
 
Niks,

I felt the same as you regarding constipation causing pain or constipation a symptom of the real issue.

For us, constipation is a "side effect" of the other issues. Gus has serious strictures in the intestine (top and bottom), but not in the colon (yet).

You have more advice than you can use, but here's one more for the record...
Have them keep her in the hospital and "unconstipate" her. They should keep her there until the x-ray shows she is totally clear. Then re-do the MRE. Who knows what they couldn't see though the constipation?!

I hope the docs figure this out for you very soon!

Hugs. Cheryl
 
Wow, so many replies since yesterday! Thank you everyone.

I absolutely agree about the Oramorph AND Tramadol. It is a vicious circle!! She does know that these can make things worse and is desperately trying to wean them down. It is such a fine line though, because if she lets it get too bad then it is so much harder to get back under control.

I like the idea of a pain clinic though and that is definitely worth getting her referred to if we can.

Although probably not helping matters, I am convinced that her pain meds is not the main cause of her problems as this has been going on so long and way before she was having Oramorph at all, and only very occasionally Tramadol.

Yesterday the Citramag and senna took 5 hours to produce anything, but then the floodgates opened!!

Has had the same pain today, but as not working has managed on only one lot of Oramorph, and the rest paracetamol and buscapan, and lots of hot baths!!
 
Niks,
I am glad to hear the "floodgates opened" but not glad to hear she is still having pain. I hope you can call tomorrow and get them to move up her appt. Waiting until May in this amount of pain is just unacceptable!
 
Hi niks
So sorry to hear about Jamie and her pain
I hope they manage to bring her appointment
Forward to try to get to the bottom
Of her problems.
Hugs Hun to the both of u x x
 
Niks,

I know what you mean. Gus is only 12 and about 65 pounds, but when we do bowel prep with Miralax, things barely get moving after two jumbo sized BOTTLES! Keep in mind, you are only supposed to have to give one or two capsful. I think it is another indication of the "problem" we are dealing with. Perhaps, one day, the doctors will finally understand. That's why I suggested they do her clean-out in the hospital. Then they can see for themselves that this is no ordinary situation.

Happy weekend to you!
 
Do any of you have really annoying family?

Questions like - 'Well what IS wrong with her?' 'Why don't THEY do something?' 'Why does she need enemas?' 'What is her diagnosis'? 'Why don't they know?' 'Surely they must know now?' 'Why is it taking so long!?' 'Oh well, Doctors know best!!!!' GRRRRRRRR I literally could SCREAM!!! :voodoo: :yrolleyes:
 
Yes Niks, I do! Family, friends, co-workers. I also have people who tell me to make Devynn eat healthy and that would "cure" her. She eats VERY healthy AND she usually has a huge appetite. Although, that is almost gone lately.
 
I can soo feel your frustration. Amy has been dealing with constipation issues for almost a year. Her xray showed she was fos and we ended up needing colonoscopy prep too. Also tried to do enemas until she screamed in agony when liquid went in. Also in pain whenever she eats and tests come back frustratingly normal. The prep did work though but she still has to take lax a day every day or else she bleeds and can not go. She has been going through a tough time last few weeks pain wise and we are fed up waiting for it to end. Pain clinics are very good at giving suggestions of coping with chronic pain and I can highly recommend them. I would try to get her in if you can.
 
Glad to hear that she started moving that stuff out. Even if she doesn't find complete resolution, something has to feel better to get that stuff out that has been stuck so long. I can only imaginine the odor! Poor dear!
 
Yes. It is difficult for extended family (and even friends) to really understand that there is no "fix" and even harder for them to understand how difficult it is for the doctors to pinpoint the issues. I agree, GRRRRRRRRR.
 
I understand too Niks. Many people just cannot imagine that sometimes doctors do not agree, or cannot determine a diagnosis or treatment plan. I really hope the Oxford team can finally figure things out for Jaime.
 
Hi MLS

Since the Colonoscopy Prep on Saturday she has not had a BM! This is not good. Although, so far she has not had vomiting!

We have asked for her appointment to be brought forward, they are sending us a new appointment.

Her pain is still there and now spreading to her back, which is what happened at the end of last week.

So all in all not great, but at least so far no vomiting!
 
I asked at our UCSF apt. about motility in the bowels. She said that sometimes certain parts of the bowels can become temporarily paralyzed, and that it can take up to sixth months for them to get working properly again. I forgot the name of the condition.

Is this what they are suggesting? It sure seems like an IBD and plumbing issue to me.

Kimberly
 
Kimberly27 said:
I asked at our UCSF apt. about motility in the bowels. She said that sometimes certain parts of the bowels can become temporarily paralyzed, and that it can take up to sixth months for them to get working properly again. I forgot the name of the condition.

Is this what they are suggesting? It sure seems like an IBD and plumbing issue to me.

Kimberly
Click to expand...

Kimberly, I just researched this, was it Paralytic Ileus? It certainly sounds like this is what is developing! When her symptoms started her motility wasn't a problem!

This evening she feels really poorly :(, she feels exhausted, aches everywhere, her abdo pain is there, but not severe, but the back pain is much worse. She says she feels like she has the flu, has vomited (me and my big mouth) and still no BM..

:confused2:
 
Niks,
Back pain is a symptom of IBD. I wish you guys would get some answers already. I really feel for you guys. I hope you get that moved up appt fast. You guys our in my thoughts sending hugs your way!!!
 
Paralytic ileus: Obstruction of the intestine due to paralysis of the intestinal muscles. The paralysis does not need to be complete to cause ileus, but the intestinal muscles must be so inactive that it prevents the passage of food and leads to a functional blockage of the intestine. Ileus commonly follows some types of surgery, especially abdominal surgery. It also can result from certain drugs, spinal injuries, inflammation anywhere within the abdomen that touches the intestines, and diseases of the intestinal muscles themselves. Irrespective of the cause, ileus causes constipation, abdominal distention, and nausea and vomiting. On listening to the abdomen with a stethoscope, few or no bowel sounds are heard (because the bowel is inactive). Also called paralytic ileus. Also simply called ileus.

As you can see, an ileus has many causes.
 
Aw thanks everyone. She's managed the whole week at work!! Only taking oramorph maximum of twice a day, which is at least half. Enemas not working that great though. She said she felt like she was in labour yesterday!!

she agrees she needs to come off morphine but pain is still bad and now also in her lower back.

Oh - her legs are covered in small bruises!! She never used to bruise!! She was a gymnast and could pretty much somersault and crash of the beam without so much as a mark!! She doesn't remember bashing herself at all.. Her eyes still itchy and red and has a couple of mouth ulcers that come back a day or two after they've cleared up!
 
Has anyone ever looked at bechets disease for her?
It tends to be mysterious .
Something to ask the docs about .
 
Niks, Going off any type of opiate is VERY difficult! Everything hurts for a really long time. Both my kids were addicted for yrs and yrs under diff. circumstances totally. But my son still can't sleep without ativan because of it and he has been off them for a yr and 4 months now. Opiates take away all the pain and then your body can't seem to cope with any pain when you try to come off them. Keep this in mind. She may have to substitute one drug for another for awhile.Hope this sheds some light for you what you are dealing with. it takes patience and alot of support.:ghug:
 
Niks said:
Aw thanks everyone. She's managed the whole week at work!! Only taking oramorph maximum of twice a day, which is at least half. Enemas not working that great though. She said she felt like she was in labour yesterday!!

she agrees she needs to come off morphine but pain is still bad and now also in her lower back.

Oh - her legs are covered in small bruises!! She never used to bruise!! She was a gymnast and could pretty much somersault and crash of the beam without so much as a mark!! She doesn't remember bashing herself at all.. Her eyes still itchy and red and has a couple of mouth ulcers that come back a day or two after they've cleared up!
Click to expand...

Lack of magnesium causes bruises easily....
 
Niks,

I don't know much about it, but what about acupuncture to help reduce Jaime's pain while she weans off the drugs?

I'm not sure how your country's health care system works, but if the doctor thinks the drugs could be exacerbating her condition, then it seems like something with very few side effects is worth trying.

Kimberly
 
Kimberly, thank you! I have thought about this, I used it when I had a really bad back it was amazing! It is a really good suggestion, I need to ask about it.

She seems to be coping better now that she's taking a higher dose of Amitriptyline.. She has only just increased to 50mg, so hopefully that will help her reduce morphine. She says she is still having bad pain, but she does seem much more comfortable and she definitely hasn't been curled up and rolling round like previously!

Fingers crossed!!
 
DanceMom said:
Could the bruises be Erythema Nodosum? Do they start out as red painful lumps?
Click to expand...

Have just looked at this because never heard of it!! No, I don't think so, she doesn't know where they've come from and I'm sure she would remember if she had lumps x
 
A's lumps aren't huge (though we're still waiting on the biopsy results to be sure she actually has EN). But the "bruises" start out red, then develop a lump (sometimes you can feel it better than you can see it), then the lumps go down and the red bruises turn a darker color like a regular bruise. A gets these mostly around her knees, ankles, and on her shins.
 
Guess what! Just told J about Erythema Nodosum, hers DO start as lumps! I just felt some, you could be right! Will definitely be mentioning this to GI, although is it even associated with Gastro problems?
 
Niks said:
Guess what! Just told J about Erythema Nodosum, hers DO start as lumps! I just felt some, you could be right! Will definitely be mentioning this to GI, although is it even associated with Gastro problems?
Click to expand...

It is associated with IBD.
 
URRRGGHHH.. J was literally vomiting for 20 mins solid, some blood in vomit. Even by her standards that's a lot of vomiting!!She phoned on call GI. Told her to take colonoscopy clearout again. If anymore vomiting or blood to call back immediately. Hope prep works quickly!!

Also advised to stay on soups and juices!
 
How awful. Send her my concern, and let her know we're thinking of her. I hope it works, I'm sorry she has to do it again.
 
I don't see how this poor girl can function. I've only been following her story since Dec. and I don't think she's had a day w/o pain or vomiting or both. How does she ever eat anything? They are missing something!!! I hope they find it soon or there's gonna be nothing left of her!
 
Dexky said:
I don't see how this poor girl can function. I've only been following her story since Dec. and I don't think she's had a day w/o pain or vomiting or both. How does she ever eat anything? They are missing something!!! I hope they find it soon or there's gonna be nothing left of her!
Click to expand...

You know, it sort of becomes normal. You are right. She has come to accept it, but it's not right!! She did manage to gain a few pounds when she wasn't vomiting, but goodness knows how long that will stay on now!! :eek2:

Still waiting for GI appointment x
 
Grrrr, need to vent!

J vomiting blood again today! The colonoscopy prep really didn't do much this time round, her vomiting has got much worse again.

She called GI on call. He spoke to consultant and they are pretty sure that she has probably torn her stomach a little, causing the bleeding. He was uncertain whether to get her in again or see if we can manage at home, he advised her to see GP and for the GP to call him if he was at all concerned.

I was at work so couldn't go with her, but GP not our normal one and was absolutely useless! Didn't call GI, took BP 89/50, but pretty much that was it!! Gave her new anti sickness (Prochlorperazine) and sent her packing saying the oramorph was probably making her sick! He didn't even listen to her bowel sounds or take her temperature!! Considering she does not take this hardly at all and her previous history I am pretty horrified!

Pretty fuming right now. She has taken new anti-sickness, but the first sign of nausea or vomiting I shall be calling the GI myself!
 
Niks we have given up on our GP practice unless we see a partner and even then very often they have so little to add. It is so frustrating.

I really feel for you all, it really can't be easy and I know hospital is the last place your daughter wants to go back to but it might be for the best.

Hugs from 'down the road'. Xx
 
Niks,

If I could, I would fly over and help you camp out in front of the GI's office until they decide to keep Jamie and get to the bottom of this stuff. Shame on the GP for not immediately recognizing that vomiting blood requires intervention.

GRRRRR on your behalf!!!

Cheryl
 
Aw Hun
I'm so sorry Jamie is not feel good again .
She needs a break and so do you.
Keep at the GI untill they get sick of you
Hope things approve x x
 
I'm really upset with the care Jamie has received and it makes me terrified that A will get the same kind of care as an adult. No one deserves to be so blatantly ignored in that way. Hope she gets some answers and some relief soon!
 
I guess her bloods generally come back okay and her MRE was clear! Therefore nothing to go on...

Very frustrating and horrible to see her so poorly, the most annoying thing is that there has been inflammation, there has been previous bleeding and initially Pred worked.. Barium got stuck and didn't move anywhere, until vomited, surely this should all flash up warning signs, along with weight loss, vomiting and now very few BM's even with laxatives and enemas :ybatty:

Have just e-mailed through to secretary to push forward clinic appointment, if we make it that long!
 

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