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Autoimmune disease
Anyone have chrons / ulcerative colitis ??
Shauna2866 · 28/08/2022 23:07
Anyone have chrons / ulcerative colitis ??
Just wondering really if anymore suffers with the above ?
Basically this all started after I had my c section in January this year started of with constipation which I no can be normal after have a c section but then it turned it to urgency and diarrhea
with blood and mucus the mucus was like brown sorry TMI 🤦🏻♀️
Went to the doctors about it he asked me if I have any family history of IBD and I said no as I don’t know of anyone in family who has it so he said I will send
You for blood tests and a stool tests blood test came back normal except my liver
slightly raised but this has been like this for around 3 years as I have pcos so he said sometimes than can be linked with it but I’m having a scan on my liver to make sure everything is okay
My calprotectin test came back and he said it’s abnormal it should be under 50 and Mine is 157 I have no infections as this was checked too I asked for a Copy of the results and it basically said possible IBD and repeat test again in 2/3 weeks but my symptoms completely disappeared and since last week it’s back but I just don’t have the bloody mucus I’m just having cramps and urgency and then constipation/ lose bowels sometimes I get serve cramps where I’m like I need the toilet now I go and nothing happens every morning I wake up literally after 10 mins of being awake I’m in pain with my stomach until I go toilet and then it will go
also my bum burns so much after to sorry 😑🤦🏻♀️ I did get referred to a gastroenterologist they have only just called me Friday after 3 months said I can only have a telephone consultation due to covid
But Ive not long found out I’m pregnant again so now she said she won’t do a colonoscopy as it’s to risky but if I need one she will but she doesn’t like doing them incase I misscarry she has left her number for me to call I have called her back over the weekend and left a message explaining that I’m in pain and my bowels have gone all over the place again!
I have jus done another stool tests last week
to see what my levels are if they have increased or gone down but tbh I don’t think they would of done there’s definitely something going on and I wish they would jus see me and let me know
My back is always hurting me as well not sure if that’s pregnancy related I kno it can be but with all my other symptoms I’m worried and I have also read up that calprotectin can detect cancer and I’m worried sick about that as I have to small children and another baby on the way I lost my mum last April to cancer too so I’m always worrying 😰
Didn’t mention my age I’m 29
Sorry for the long post I’m just worried and I feel like I’m getting no where with anyone hopefully I’ll get a phone call back on Tuesday and my stool test back too
Xx
Aerielview · 29/08/2022 08:27
Hi op, you have my sympathy.
You should look into the Specific Carbohydrate Diet
HGC2 · 29/08/2022 08:32
I have chrons, prior to surgery my calprotectin was off the scale, my hospital only measures to 1800 so if yu are at 157 it is probably at the worth watching stage, good you have had another test done and can see what the numbers are like. Pregnancy certainly messed up my system and made my movements more erratic. While you are waiting on the test results you could try eating low fibre foods to give your body a bit of a rest, things like white bread, no seeds etc
Shauna2866 · 29/08/2022 08:40
@HGC2 thank you for replying I’m just gonna wait and see what my levels are like this week and then go from there but again this morning went the toilet as I have really bad pains in my stomach and now I have brown red mucus when wiping definitely will be going on low fibre diet see if this helps x
Shauna2866 · 29/08/2022 08:40
@Aerielview hi yes I will look in to this thank you x
FawnFrenchieMum · 29/08/2022 08:51
I have crohns and also have had a rectocele and bowel prolapse after the birth of my first DC. The third thing I’ve been diagnosed with is Diverticulitis.
www.nhs.uk/conditions/diverticular-disease-and-diverticulitis/
All three of these conditions can cause the problems you are describing and all far more likely then cancer. Whilst you calproctin is raised it’s not an off the scale IBD flare scale so one to watch but not panic about.
It very unfortunate that you are now pregnant again as many of the tests involved would be risky when pregnant.
Shauna2866 · 29/08/2022 08:58
@FawnFrenchieMum yeah I got told this I Would be seen in 8 months time due to being pregnant so now I’m gonna have to deal with this till then
yeah it’s jus I read up calprotectin can detect cancer 🤦🏻♀️ Sure my next calprotectin test will tell me what’s going on GP said can take around 1 weeks to come back so hopefully end of this week they will be back
HGC2 · 29/08/2022 09:13
They can do other diagnostic tests such as an mri so see what your results are and take it from there but eat as little fibre as possible in tbe meantime
NerdyBird · 29/08/2022 09:24
A low-residue diet can help, also some of the medications are ok to take in pregnancy. You do need some sort of diagnosis even if it's not a full colonoscopy. A sigmoid might be feasible, or a scan.
FawnFrenchieMum · 29/08/2022 09:34
Honestly I wouldn’t bank on the calprotectin telling you too much, it’s literally an indicator whether more tests need doing or not.
It it’s still high you can push for an MRI that can be done in pregnancy and should give you some idea what’s going on. They do like to have biopsies that confirm IBD though so may still do a colonoscopy after the baby is born.
Shauna2866 · 29/08/2022 09:38
@NerdyBird when I got a phone call last week she did she said Would do a sigmoid if neeed be I’ll see if they contact me again this week hopefully they do I’ve left voicemail to her asking her to call me
@FawnFrenchieMum don’t really no much about calprotectin tests just GP said for me to do one the first time he said it will
detect if there is inflammation and it came back it was there must be something going on for me to be having bloody mucus urgency to go constipation and calprotectin level abnormal
I’ll get To the bottom of it Hopefully soon 🤞🤞
hedgehoglurker · 29/08/2022 10:54
I have Ulcerative Colitis. Certainly agree that low fibre and no seeds is best. Any veg should be well cooked. If you are sore from wiping, I was prescribed Canesten+ Hydrocortisone combined cream, but it may not be suitable in pregnancy. A little nappy rash cream or regular canesten might help to sooth it.
I was also 29, but as it was only once daily diarrhoea, I didn't seek medical help.
My symptoms really improved during a pregnancy 6 months later - I hope yours do too!
I eventually saw a gp after the birth. After trying some gastric meds like buscopan, the diarrhoea suddenly escalated to over 20 times a day with lots of bleeding. I was fortunate to have private health insurance at the time, so I was referred to a gastroenterologist, had bloods, stool samples, booked in for colonoscopy and diagnosed within about 2 weeks, when baby about 4 months.
I've had 3 colonoscopies and 2 sigmoidoscopies. In your position, I would be keen to get the sigmoidoscopy to aid a sooner diagnosis, if you and your doctors are happy with this.
Shauna2866 · 29/08/2022 10:58
@hedgehoglurker I’m gonna ask for a sigmoidoscopy definitely as I need to know what’s going on there obvs some inflammation going on and I wanna no what it is it’s the not known driving me insane back is absolutely killing all at the bottom but could be pregnancy related 🤷🏻♀️
can I ask what you calprotectin levels we’re when you had them done ??
it’s the urgency and the mucus that gets me down and stomach cramps sometimes I actually don’t wanna go out cos it jus comes on so sudden and I’m like I need the toilet now 🤦🏻♀️ Jus can’t be helped awful never had no issues at all until I had my second c section
hopefully I’ll get answers soon x
hedgehoglurker · 29/08/2022 11:32
I'm sorry, I don't recall any calprotectin tests. (I had to look it up and found they weren't generally used in UK until they were approved by NICE in 2013, and I was already diagnosed by then.) CRP blood tests were used for my inflammation levels.
Have you tried a hot water bottle/ hot wheat bag/ or shiatsu type electric massager? I've found these very soothing and helpful. I used to have a hot wheat bag in a scarf tied to my back most of the day during pregnancies, like many mothers carry their babies. We affectionately called it the "hot baby"! I think my back pain was mostly due to the pregnancy hormones and a prior whiplash injury during my first pregnancy.
Shauna2866 · 29/08/2022 12:43
@hedgehoglurker oh did they not wasn’t sure if they always done them tests as I’m new to all this yeah I have a hot bottle I’ll try that see if that helps x
FawnFrenchieMum · 29/08/2022 12:49
Just bare in mind that a sigmoidoscopy only looks at the rectum, possibly first part of the bowel, it would see UC but unlikely to spot crohn’s unless it’s in the last part of the large bowel. Crohn’s can be anywhere in the small or large bowel.
Yorkie177 · 04/09/2022 15:16
I’ve had colitis for 20 years. Not a fun thing to have to live with but also had very long periods of no symptoms. There are loads more treatments to help now than when I was diagnosed. I would as a first port of call get yourself a specific IBD dietitian. There is loads you can do by diet alone (ignore anyone who says diet doesn’t help) Get a good balance of supplements and a good probiotic. I would also recommend Psyllium husk which made a massive different for me. I would also join the Crohns and colitis society. They will put you in touch with support groups and give you a medical card that means you can use staff loos in shops etc. There is a really supportive community on instagram too so check that out.
Yorkie177 · 04/09/2022 15:18
Also ref calprotectin. I50 is really not very high so I wouldn’t worry unduly about that. It can also change quickly. Mine went from 600 plus in one test to 65 2 weeks later which was a bit confusing! Salofalk enemas work well for me so you could look into them.
mrsbyers · 04/09/2022 15:20
22 years with crohns and I’ve never had any abnormal calprotectin test so the two aren’t always linked but it does sound like your symptoms match
mrsbyers · 04/09/2022 15:21
Took me three years to get diagnosed as they just kept checking bottom half ie large bowel and telling me I must just have a stomach Ulcer and or IBS - by the time I was diagnosed I needed two major surgeries including a type of stomach bypass so push for them to have a look down as well as up via camera
Yorkie177 · 04/09/2022 15:25
Me again- just reread your post and wanted to reassure a bit more as I know how scary it can all feel. I’ve had 2 children and 1 c section (had flare with second, 3 years remission with first!) hormones definitely make my colitis flare as well as meds- def no antibiotics or ibuprofen. If you do need to take these try taking saccharomyces boullardi and Vivomixx probiotic. My gastro consultant tells me that even though people with IBD have a higher risk (only marginally for many) of bowel cancer, the fact that we have colonoscopies so much earlier than the rest of the population means we actually usually have better outcomes- that has always put my mind at rest. There is a dietitian on Instagram Brittany_bheard who has colitis herself and talks loads of sense. Use your gastro nurses too. You should get a number/ email to contact them with any queries. Hope this helps!
Shauna2866 · 04/09/2022 17:01
@Yorkie177 thank you for info I’m trying not get to worked up about it but it said on the form from the calpro test it could also be neoplasia which is a worry 🤦🏻♀️ I’ll see what the GP says tomorrow when I speak to him
@mrsbyers oh so you’ve never had high calpro levels with your chrons
don’t know then what’s happening as every morning I’m either constipated or I can go and then even if I can or can’t there is always thick brown bloody mucus back ache stomach cramps something is going on driving me mad
x
Shauna2866 · 04/09/2022 17:54
Plus there’s always ready mucus all the time cos my levels are low I’m thinking it’s something else and not ibd don’t ibd patients have very high levels
just bedside myself thinking the worse and when I seen possible C word on my results that’s really sent me in to a meltdown don’t know if I can wait 8 months for me to be seen it’s ridiculous
Yorkie177 · 04/09/2022 18:14
I had a flexi sigmoidoscopy when pregnant. Be pushy and insist on one asap.
Shauna2866 · 04/09/2022 18:17
I’ve said this and all they say is there too fully booked and I’d need to go to A&E I’m gonna demand tomorrow when I speak to the Gp sick of worrying like this !
got 2 kids and another baby on the way just petrified incase it is cancer I lost my mum last April to that disease
x
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