Firstly, as some of you know, I was to have my bowel MRI on Monday. Well, I arrived, and was promptly asked to drink 2 litres of clear fluid over 45 minutes which was a contrast. Mannitol apparently which is basically sugar alcohol used for diabetics. Regarding side effects, I was told they were rare but that I might have loose bowels later on. Well, that was an under statement as no sooner had I finished the drink and I was in the loo. 5 dashes to the loo later they were still trying to get me in the MRI machine long enough to do the scan. After I had been in and out of the machine 4 times, we called it a day. I then had to sit around for a hour or so to make sure I could go long enough between loo dashes to make the hour and half journey home. Eventually, I was given Tena pull ups and did make it home only having to stop once, and then spent the rest of the evening making loo dashes, albiet not so urgent. It finally settled Tuesday afternoon but gurgling tummy continued till late that evening.
I'm wondering if anyone else has had this happen after contrast, particularly Mannitol? I know now that it is used as a laxative but it still seemed a bit of an excessive response.
Secondly, I had my nose biopsy yesterday and the estimated 20 minute minor op became 1 hour 15 minutes as I apparently had an abnormal reaction to it. The doctor said from what she could see, there was no immediate evidence of vasculitis or in fact even inflammation, but she did feel my reaction was consistent with MCAS.
I started choking on thick mucus that was running down the back of my throat and cascading from my nose. I was sneezing constantly, my face was bright red and swelling, I was gagging on the mouthfuls of this mucus and it was just impossible to clear the fountains of it. She said it was an excessive abnormal response and this was just to a local anaesthetic before she even started the biopsy. After about half an hour of coughing and choking, I finally cleared it and was fine for the rest of the procedure. When speaking afterwards she said a little mucus is normal but not to that extent and she did seem to feel it would be consistent with MCAS although this won't show on the biopsy under the microscope.
I'm just wondering if anyone else has had any reactions like this and if you think it could signal MCAS?
Thank you all X
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Georgie-girl
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I was worked up for MCAS but do not have it. It is a hard thing to diagnose. First they rule out traditional allergies and anything else relevant. Do you have food allergies? Anaphylaxis? I was told by an expert my symptoms were right but not the order and presentation. Mast cell patients tend to get all the symptoms at once — GI, respiratory, neurological — not at different times.
Thanks Kay, that is very helpful. I don't really have any allergies, or I didn't think I did. None to food or anything like that.
I never gave MCAS a thought until my autonomic doctor said I have blood pooling, a tendency towards POTS and internal hypermobility. Since then, doctors keep mentioning MCAS. Hopefully I can get a referral to an immunologist to maybe rule it out.
Well, the immunologist asked the fellow if she noticed any hyper mobility with me. I also have orthostatic hypotension, and that was a possible sign. So I can see why your doctors are suspicious about MCAS with you! Hope you get an immunology referral.
Hi kay: in case it’s useful to you...have just replied to GG below giving her links to our official UK MCAD support group website & its facebook forum (my impression is that there are USA people there too)
Thanks Barnclown! It turned out I didn’t have MCAD. It was all the autonomic dysfunction. Apparently, the mast cells and the nerves talk to each other, and it causes symptoms to be similar in some people.
Good to see you here and posting. How are you doing today?
Yes, we think my case is sort of along same lines as yours...but i joined this group just to learn more because it’s such a decent sensible official group...there are others relatively like us there without official MCAD diagnosis, but with immune dysfunction & connective tissue disorder conditions of various sorts , so i feel right at home on this forum
Thanks for asking:
Although we’re not as HOT as the continent, we’re getting hotter here now, so the darned Erythromelalgia has me permanently on fire.....but am slowly recovering from the surgery and now i’ve been able to restart myco @ 1/2 dose the lupus flare triggered by the op is gradually settling down. ...the repeat bowel obstruction caused by the IV opiates has upset my GI applecart though and the bit of function that is returning is very tentative. So i’m just keeping calm & carrying on using the tricks my medics & i have kitted me out with...thank goodness for my leads in rheumatology + immunology + gastroenterology. Just to complicate things, on ward post op i subluxed my right shoulder hoicking my sore carcass around in bed - going by past hEDS shoulder subluxes i have known, this means several months of useless sore dominant arm...what a life...the more the merrier? 😆
Have you got it HOT there..hope things are ‘good’ @ your end ❤️🍀❤️🍀
Oh, I bet their opiates are doing a number on your malfunctioning GI system. Yes, just keep as calm as possible and wait until you get back to baseline. You know to call the doctor with any signs of obstruction.
I think I will join that group, not because I have the disease - my mast cells are totally fine and I don’t have allergies - but my autonomic dysfunction impacts my life more like a person with allergy/mast cell issues. The neurologist says there is an inflammatory component. I have gotten to know a PA in an immunology practice from a coffee bar. The immunologist (Oxford-trained) treats mast cell disorders. This PA has such compassion for her patients and what they go through. And it was great that she understood me too. She called my experience of deterioration after multiple exposures « twitchy. » Now I can just say that I have to avoid certain things. Otherwise, I will get « twitchy! »
YAAY: GREAT you’ve got this friendship! Can only be REALLY helpful...OMG this sort of thing makes such a pos diff 👏👏👏👏. I ❤️ your “twitchy” 😆
👍 Yes: this time Gastroenterology recognised & diagnosed that the op day + 1 day post op of IV opiate (fentanyl)-caused this bowel obstruction on ward. Which is why i’m recovering with no prescrip analgesics (am already officially documented allergic to NSAIDs, codeine, anti-epilecotics etc, now opiates. So, we’ve been through this sort of bowel obstruction incident before & anticipated it would hit again this time...the last time was the barium iohexol contrast agent swallow in spring 2018 which completed my segue into intestinal failure and resulted in my going onto elemental enteral nutrition long term. My gastro condition is AID/PID/CTD-related intestinal failure + CIPO (chronic intestinal pseudo obstruction, known as enteric neuropathy in the UK)
Your GI issues are so complicated! I took a look at the MCAS site. Glad to see there is a movement to increase recognition of the syndrome in the UK. One problem is that because it is a poorly understood and new disorder, quacks are getting in on the action. The guy I saw, who discovered the tryptase test, clearly did not respect the « expert » who I had been reading. He said there is now over-diagnosis. His lab is working on improved testing. I am sure the academic centers in the UK are also working on improved diagnosis and testing too.
As others have said, the syndrome is more common in people with autoimmune disease. There is also autoimmune mast cell disease. Apparently, the guy I saw is a world expert on that. Is that what they think you might have?
I will try to get information. The doctor is Lawrence Schwartz, at VCU. It is not one of the big medical centers but people come from all over the world to see him.
👍 we 🦓s are venn diagrams: eg my simultaneous 🦓🦓🦓AID/PID/CTD infant onset primaries are all involved to some extent in everything happening all over my bod...even relatively straightforward injuries have been/are more complex due to AID/PID/CTD joining the process (eg a hEDS subluxation that triggered chondrosarcoma development...thing is: i went without adequate systemic medication till my late 50s, so there was nothing but lifestyle management/self help impeding progression...and OMG has 8 years here proven i’m not the only one 😉)
👍Exactly...so I stick to using the term Mast Cell Activation Disorder (MCAD) cause 🦓 patients like us are complex and the science so far says there are all sorts of versions other than Mast Cell Activation Syndrome (MCAS)...i like good old wiki’s basic take on this:
And yes 🤷🏼♀️ this is it: MCAD attracts quacks 🙄...and OMG tell me about a health condition that doesn’t....especially 🦓 conditions (the cutting-edge-of-science types). Fortunately, like our HU LUK forum, this MACD UK support group SEEMS clear of that...but am staying wary & open-minded...feeling my way as i go...not rushing to consult our 1 UK official MCAD expert immunologist...am feeling no urgency cause my treatments are helping enough for the time being
In the UK, CIPO is basically a diagnosis by default (it took 5 years of multidiscipline tertiary investigations to get me to this)....which makes some of my gastro consultants a bit edgy, but my specialist gastro dietician cum nutritionist is constantly working with 🦓🦓🦓 cases like mine and the results of all those high tech investigations + the seriousness of the consideration my MDT is giving to this aspect of my issues + my pos response to treatment + my neg respinse to critical incident triggers encourage my faith in the diagnosis, for what it is
😆 You’ve really got me going, Kay....am at my best in the early morning...apologies for going on at such length...but these 🦓 subjects are close to my ❤️
These links are to my fav official refs for my mouth to ass GI tract situation...which tertiary gastro centres are now acknowledging is affecting a significantly high proportion of cases involving Hypermobile Ehlers Danlos Syndrome + other overlapping very early onset systemic incurable progressive immune dysfunction & connective tissue disorder comorbidities like mine (especially SLE & PID)...as always: 🦓 venn diagram stuff 💁🏼♀️...maybe something in these will be useful to you &/or others reading GG’s great discussion:
My rheum thought I may have MCAS and my chrommagranin A results were through the roof. So he started to trial me on some basic drugs to treat MCAS and a number of my MCAS sxs improved dramatically. It appears that MCAS coincides with rheum diagnoses pretty frequently. I have a lot of the GI issues you do but not the nasal responses you did
If your symptoms improved, don’t you think that is significant? Mine really didn’t. The thing about MCAD is that there are effective treatments. So good your doctors are aware of it. Not many are.
Yes I absolutely do. Some doctors believe response to medication is as telling as any bloodwork. I am grateful he had the idea to just start the meds!!
Mannitol? It’s infamous for causing bloating a diarrhoea in some. Sugar free gummy bears containing mannitol ( we call then teddy bears here) are given to others as a joke. Reading the reviews on Amazon is fun, but not if you’re ever had that reaction.
I cannot understand how they hadn’t factored that in. You poor soul x
My thoughts exactly Lupi. Considering I was there in the first place for stomach/bowel issues I would have thought they would have taken Mannitol into account. I'd never heard of it until afterwards or I would've asked if they had something else to use for a contrast agent. At least I know for next time though.
Hi Georgie. It does seem a bit extreme to put you through all that, but hey-ho if it helps with a diagnosis.... Were these tests organized by Dr de Cruz? They do seem to be getting to the bottom of things and I'm so happy that you might soon get appropriate medication after so long. xxx
Thanks Meg, me too. I've had this sjogrens tag for so long without ever really having a definitive diagnosis, and anything that happens that can't be explained by sjogrens is put down to anxiety. I'm happy with anything that will help with that diagnosis.
It wasn't Dr D'cruz who arranged for these tests, I don't see him anymore. The bowel MRI was arranged by my gastro doc and the nose biopsy by my vasculitis specialist. Trouble is, I see so many different doctors yet none of them seem to put everything together. Hopefully now as you say, things are beginning to come together and they can get to the bottom of things between them. X
Hi Georgie. Yes, the 'not joining the dots' syndrome seems to be very common amongst consultants, unfortunately!! Take care and let's hope you get some answers soon. xxx
Hello GG...sorry am coming to your thread so late, but am slowly recovering from the scoliosis spine surgery just over 2 weeks ago, so haven’t been able to come on forum until v recently and am only now strong enough to join in a tiny bit here & there
You’ve got great replies, so not much i can usefully add except:
Yes: i am hyperreactive in a similar way to all these ‘swallows’ they give is for imaging...the diarrhea is dreadful...you poor thing...my univ hosp now lists all these substances on my records under the allergy section. And immunology + gastroenterology suspect a MCAD is one of the causes underlying my hyperreeactivity
Recently i joined the WONDERFUL ‘Mast Cell Action -MCAS UK Support’ closed facebook ...this is a FANTASTIC forum...can’t believe i didn’t find it earlier. Here is a link to info:
Dear coco I'm so pleased you're recovering from your surgery even if it is slowly. You're on the mend that's the most important thing. I worry about things like this as I have a reversed lordosis which sometimes causes awful neck pain so I worry I will need surgery at some point, so thank you, for being so positive about it and updating us on your recovery.
Perhaps I should, like you, start a list at the hospital of all the things that cause a reaction. That's a good idea. Thank you for the link, I will try to join it later. It sounds wonderful.
Thanks again and please take it easy and get yourself fighting fit soon. X
A couple of years back I had a bowel cancer test (poo sticks) test come back queried and was 'invited' to have a colonoscopy. I was told I needed to be able to dash to the loo. I can barely walk there, so I declined. After reading your post, I'm glad I did.
Please have the recommended colonoscopy. My husband was diagnosed at fifty with rectal cancer. The standard of colonoscopy for all 50 year olds in the us not only has extended his life we are hopeful it has saved his life. I just lost my childhood bestie to colon cancer, she was 47 at diagnosis and died less than a year after finding extensive metastases. She had symptoms for years but did not want to have the colonoscopy for fear of the bowel cleansing effects and by the time she finally conceded to have it, two years later, she was stage 4. Please get your colonoscopy. Xo
I must agree with Roarah here. Please have the test poems. They put you in a little room with a toilet in it so you dont have to "dash" anywhere, you're right there. And you take as long as you need to feel comfortable before going to the test room. Please go for the colonoscopy.
Well, I am not sure I wouldn’t see the mast cell specialist with all you have going on. The tests are harmless — blood and 24 urine. There may be things that are triggering you that you are unaware of — temperature, foods, pressure.
That is interesting that they are « edgy » about the GI issues. I am not any where near as severe as you are and at this point and they use words like « delay » or « dysmotility. » Maybe CIPO is more specific? No apologies for going on about this area. Wish I had been able to talk to you when I was much worse and still thought IBS.
Will read the information and remember mornings are your best time!
You’re right: CIPO tends to be a default MDT diagnosis of last resort after copious tertiary investigations + scrutiny of medical history (inc existing diagnoses & flare triggers) + response to treatment LONG TERM all establish CIPO has gotta be it...i want to live long enough to see this better understood, and recent advances/leaps in the understanding of hEDS gastro manifestations are encouraging...🤞🤞🤞🤞❤️🍀
Looks like chronic pseudo-obstruction is of a severe nature by definition. Mast cells may be involved too. Just read that in the introduction of a Medscape article, which did talk about the various motility disorders. Hope they understand these conditions better, as so many are affected.
🤷🏼♀️ Yep: CIPO is mega 🦓...the frequency with which we end up on Enteral & Parenteral Nutrition is alarming medics, patients, families alike...i am grateful & relieved to be doing as well as i am on long term Enteral Nutrition & i hope to avoid segueing into Parenteral Nutrition, but obstruction incidents like the one i just had post op on neurosurgery ward could easily tip me over and the neurosurg chief’s + my Gastro team’s anxiety about this was palpable. Of course the side effects of long term Enteral & Parenteral Nutrition are no joke...but my immunology chief is already closely monitoring me for these eg liver failure...so 👍🤞✌️🍀❤️
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