Some will already know from my previous posts I went for an ultrasound scan today on my intestines. When I arrived home I had recieved rather a lot of post.
I waded through the various bills and then opened one from the hospital, it was from the endocrine dept. Some of you will know I have both hypothroidism together with hypoparathyroidism The letter gave my throid results which were all in range but my calcium was low. I have to take calcium supplements due to the hypopara issue which are prescribed. This low result made me think I had a malabsorbtion issue of some sort.
I opened another letter and to my surprise it was from the gastric consultant. I had an MRN scan 4 weeks ago and as an added bonus caught covid. It was the results of the MRN. The letter went on to say a large segnent of my terminal ilium appears to be inflamed. He went on to say it is highly possible this represents Crohns disease now wants to do a colonoscopy. 😱 📷
Crohns most certainly would explain the absorbtion issue's albeit not the best news to have another diagnosis to add to my long list. I wasn't aware crohns was an autoimmune condition plus it can be hereditary. My eldest brother was diagnosed with crohns many years ago !
Crohns wasn't something I had even considered I were being investgated for a bulge in my abdomen so this has come as a surprise. 😒
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Jillymo
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Jillymo , I’m sorry to hear of the Chrohn’s diagnosis, but at least it does help explain what’s been happening . You have been so inspiring with your posts I want to hear how you get on . You’re one of the family on this forum , and I for one am always glad to see your posts . Wishing you the very best , and will be following your progress .
We all try very hard to be supportive of others despite our own health issues. Chrons disease would explain my low vitamin levels but to be honest its not the best news I have had but will keep you informed.
Thats nice to be refered to as one of the family it makes me want to give you a hug. 😘 🤗
I am sorry to hear this Jillymo but it’s that old chestnut that at least now you have a diagnosis and it’s like a ton weight comes off isn’t it,mad to some but totally logical to others. Now you know what your dealing with and how to deal best with it the guesswork stops and the healing can begin. I wish you all the luck and success in the world take care xx
Music is my savior of which Ilisten before turning in.
The covid was horrid but at present my balance seems to have stablised. 🤫
There is no escape from my illness but I take it all in my stride. It's just confusing at times knowing what is doinfg what. I cant say I fancy a camera where the sun dont shine but hey ho in for a penny in for a pound. 😵
I can imagine how reading such unexpected news must have knocked the wind out of your sails. It’s a horrible way to find out but then is any way to find out nice?
Like Thrones said at least you know what you are dealing with now and IF it is Chrohns then maybe your brother can help you up the learning curve - although if he’s anything like my hubby it’ll be like talking to an ostrich!
As always do your prep so you can ask sensible questions to which you may get sensible answers. Does SIBO (small intestine Bacterial Overgrowth) give similar symptoms?
Meanwhile you are still the same Jillymo we know and love and we will all be with you wherever your health journey takes you.
Take care and there will be a silver lining out of this dark cloud you feel.
Sibo as far as I am aware is caused by a bacterial overgrowth. What is showing on my MRI results is chronic inflammation. The consultant seems convinced it is Crohns but wants to take a closer look to make sure nothing sinister is going on. I have the sticky clotting blood condition APs which complicates things because I could have bleeds or on the other hand restricted blood flow to the ilium.
I'm a strong old cookie and not going to let this phase me.
I have been in a similar position to you, I have PA, Crohn’s disease and have antibodies for Hashimoto Thyroiditis (autoimmune hypothyroidism) and currently have a high TSH with a wait and see approach with thyroid monitoring from my GP. I was told by my gastroenterologist that it is very common for autoimmune disorders to occur in multiples with the magic number of 3, many more people with more. I currently take 2 medications for my moderate Crohn’s. and use Methylcobalamin B12 SC injections daily. I also see a Naturopath to aim for gut healing and she has provided with some natural remedies for which I have had some remarkable improvements. My journey has been complicated but, I believe with time the gut is very capable of healing. My Crohn’s symptoms have improved significantly and have excellent active and serum B12 levels. My only concern now is my peripheral neuropathy which causes me significant pain and grief. My Naturopath is in the process of assisting me to heal this as she believes nerves have the ability to heal but, I’m not so optimistic, we shall wait and see if this is possible.. I sincerely hope that you aren’t too upset with this new diagnosis as is the case in the beginning, it can all seem overwhelming with all the technical jargon provided by your gastroenterologist. Stay strong and positive. My hugs to you.🤗🤗🫂🫂
I have alao been doing gut healing by taking symprove and slippery elm. I am told golden linseeds are good if soaked overnight. I am not able to take them due to my diverticular desease.
The news hasn't upset me more puzzled than anything else. My inflammation markers have been raised for some time but not investgated. I couldn't help but laugh at your tittle which I can relate to. 🌪 Op's
I am finding the neuropathy dificult to get rid off but it is better since my self injecting. This Crohns is just another string to my bow and makes me more vigilant as to what is occuring.
How has symprove been working for you?? I’m not very familiar with this. My naturopath has suggested a diet change and removing inflammatory foods ie not eating or cooking with vegetable/canola oils, replacing this with olive oil and cooking with ghee, apple cider vinegar instead of regular vinegar in conjunction with a variety of supplements such as Emu oil which is a cleaner omega 6 than fish oil with many other nutrients and benefits especially for gut health and inflammation. Not sure if it’s possible to purchase in the UK or anywhere else around the world but well worth investigating its availability. Also removed carbs such as breads, pasta and rice for while and reintroduced later with more healthier options such as sprouted grains or dark rye breads. It’s a working process which hopefully has some long term benefits.
With my Crohn’s, I have regular Calprotectin stool testing which is an accurate marker for inflammation in the GI system, these numbers have significantly improved with the aid of my naturopath and her remedies. I’m ever so slowly ticking the boxes with the only elephant in the room being my small fibre neuropathy which continues to be a major pain in my life. Hopefully, this box may be ticked off in the near future.
I do hope so you get to the point you can tick it off. The neuropathy drives me insane especially at night whilst in my bed.
The Symprove seemed to suit me in fact I must get some more. My gut seemed to be more comfortable and less bloated. I take cider apple vinigar in the mornings. I am not able to tolerate ghee but i'm ok with olive oil. I am gluten free but occasionly slip off the wagon ( I do love a nice bit of crunchy bread ). I also take an amega three. Sprouted grains, I did all that when I suffered with candida. I grew the wretched things but cant say I enjoyed them. 😝
Food wise I have slipped recently through being to ill to cook. I have felt so lathargic and the the covid as well ive been too tired to do anything. I ordered a dinner the other day with veggies and came up like a balloon !
The only stool testing I have had is the yearly one they send in the post to detect blood. I just read something that made me smile apparently so long as we can pass wind there is no blockage. 🤔
Sounds like you have it under control so keep doing what your doing. Xx 🤗
My journey with a naturopath began this past July so, only four months. Giving her a thorough explanation of my health and history, she started with a complete diet restriction eliminating everything in my diet she believed was toxic and inflammatory. In my mind was very extreme but, I decided that I had nothing to lose and much to gain. She then began me on certain remedies and supplements to assist digestion with healing the gut lining, assisting bile flow, healing the intestinal lining from the beginning to the end and producing healthy stools, trust me this was very difficult to change old set in habits. With her giving me very thorough explanations of each stage of digestion and why it was all necessary to healing the complete GI system, and eating a very restrictive diet, I persevered with the process. Four months in, was slowly introducing healthy carbs, whole single origin proteins and vegetables, high quality supplements I am finally seeing the benefits and feel heaps better. It is still early days in the healing process but, am finally beginning to feel optimistic. I will continue seeing my naturopath as she believes in time my nerves can repair from the damage caused by insufficient B12 treatment. A healthy gut is considered a secondary brain of our body and is essential for all bodily functions and if it’s not in optimal condition we can be prone to infection and diseases. So, with all this information at hand and learning more about how the body/brain functions then with the benefit of hindsight, definitely worth making lifestyle choices that will benefit the body. I definitely recommend a naturopath in combination with an empathic GP to improve our understanding our bodies and improving our health.
I'm so excited to hear that you finally have a diagnosis. Chromes is no fun and hypoparathyroid is very hard too. A friend of mine has it and landed in the hospital because she didn't keep up with the calcium.
My heart goes out to you. We do love you and applaud your persistence and perseverance.
Glad to hear as well that you made it through Covid.
I'm just so happy to hear from you and hear the good news.
Hi Jillymo,That must have been quite the mail to open - although that is a tough diagnosis I do hope that it leads you to some place positive.
Regardless I am sorry to hear.
At least someone is on it. Around this forum that in itself is ridiculously party-inducing for us . Not 'nothing', not 'all in your head', not 'we've tested for this or that so....I don't know' & done.
When I was reading I was thinking about fbirder; he once mentioned that there was a part of the intestinal passageways that is not accessible by gastroscopy or colonoscopy. I do wonder if your MRI picked up.fro this exact area, I guess it wasn't the unseeable place as they are sending you for a colonoscopy.
I hope you have some concrete answers with the next round of testing. All the best to you.
I am not so much shoched at the diagnosis more surprised than anything. It wasn't something I had considered ! I had put the uncomfortable burning sensations in my abdomen down to my errosive gastritis.
What irritates me most of all is the fact our Drs / Consultants do not listen. No matter how hard I tried to explain my B12 symptoms I were not listened to. The thing I cant get my head around is why they send patients to a neurologist ( the one I saw totally dismissed my symptoms ) when I would have thought the first port of call would be a gastrologist. Surely it makes sense to investigate why the deficiency has occured before investigating the symptoms. I remember a lovely consultant saying to me once 'if only more consultants would listen to there patients'. How right he was.
I remember fbirder. So far I have had a Endoscopy, MRI and an Ultra Sound but now got wait for the Colonoscopy which can reach the entire length of the colon. 😱 I have had the process done once before.... oh joy I sure know how to enjoy myself, NOT. Maybe I need to get a tattoo on my bum a bit sharpish saying 'no entry'. 😧
The large inflammed ilium segment that the consultant is investigating was picked up on the MRI. I had to drink two pints of contrast, I seemed to be in the scanner for ages. We will have to wait and see what the colonoscopy reveals. Cant say I am looking forward to it. 😘
Have to wait and see what they find when they do the colonoscopy but cant say I am looking forward to the proceedure. I feel a lot of the colon and gut issues are caused by my Sjogrens.
Life goes on no matter what so no point in my worrying. 💐
Keep us updated about your procedures, findings and treatment.
I have had a couple of colonoscopies - both times, it was fine. Treated well and with care and respect, uncomfortable rather than painful. Did not take long or didn't seem to ! The drugs given were quite strong - and that no doubt helped.
I have had a colonoscopy once before where they removed a polyp so I can only pressume this procedure will be the same. At present things are not looking too promising with a large part of my ileum inflammed.
My life seems to be sceduled around hospital appointments and if honest I really am not up to it. I simply have not felt right since catching covid & the clock changing hasn't help with the darker nights.
Iv'e received another appt for the 14th for an ultra sound on my heart! I had an ultra sound on my ileum only the other week ! Why the hell they couldn't do it all in one go is beyond me.
I think I need to put my SAD lamp on iv'e got my fuzzy grumpy head on this morn.💡
I felt the same the other week when told I had calcification of the coronary arteries but could not get a GP to understand why I would like to know the extent and severity of the damage. [Why wouldn't I ?]
Well, I have started taking the statins now , yet still don't know - but since no contact details were given on the letter, I went back to the Lung Health mobile unit. Just to see if I could get any further information about the original lung scan that had incidentally picked up on the heart problem. It is with a London hospital, and can only be requested by my GP. Good to know - and I've passed this information on to my GP surgery now. Let's hope someone acts on that. I have also been referred to the cardiac department of my local hospital now.
Not only difficult to get through to GPs but also communication between various parts of the NHS service problematic. Just glad the mobile unit was still in the area...
I have I think got a similar communication problem in being transferred from Oral medicine to the gum people. Although it is likely that they are on the same floor, I think my paperwork has fallen down the lift-shaft !
Takes a while after Covid to get back on track, and a while after clock-change for a body to be able to tell the time again. Take it very easy between appointments, and try not to get disheartened.
I also had two polyps removed. They did not seem concerned -and I was too drugged up to care !
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