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Julia12345

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Hi, i had a colonoscopy & gastroscopy 2011.
Colonoscopy Report says:3x mucosa-patchy moderate congestion and erythema and congestions . gastroscopy report says:gastritis and duodenitis . and cryptitis.
I was due a capsul endoscopy as the gi predicted crohns in my small intenstines spreading through my gi track. I have symptoms which are a page long. Short version i feel like i am fallen apart. Intensity and time between flare ups is getting shorter and stronger. Unfortunate the gi i saw retired and the gi who took over is not willing to help me , why i do not know. Most scarries bit is when i get the episodes of spending hours on the toilet with only blood bowelmovents, the pain is beyond anything i can descrip in words. My gp put me on asacol 3xa day and prednisolone 30mg a day and was on codeine 60 mg for the pain and twice a day omeprazole. After two weeks of steroid treatment i feel an improvement not great but i can move, my gp now wants me to tapper off the steroids and put me back onto co codamol. Which i have been on for the last 5 years as everybody was waiting for the gi to do another colonoscopy and gastroscopy. I am vomiting, diarreha, concipated, feel ill, neusea, fragile, fatigue, itchy skin, mouth ulcers and coldsores, joint pain, lost my appetite, loose weight, back pain, pins and needles sensation in my hands, cramps, concent dull abdominal and stomack pain, sudden cramps, cramps and pains after i eat and before after and during bowel movements. I run 20 times for weesba day and pain after i empty my bladder, i got skin flaps on my anus, urgency for bowelmovements and nothing happens and nearly had several accidents where i coukdnt hold it or it surprise me out of the blue. I get cold shivers to a point i shake. Feeling cold all the time. Getting dizzy and my gland in my throat is swollen. All together i do not feel well. This last flare up started about 4 weeks ago and its taken all my energy i got. I cant work and struggle everyday. I am realky worried about my body , the only way i get sleep at night is on sleeping pills. My gp asked me to come back in 4 weeks time. I have been admitted to hospital 4 times this year. With the gi refusing to treat me. Which makes it a nightmare. All they do is putting me onto a drip for fluids and send me home with co codamol, diazapan,. I am usually a very fit person work 6 days a week. Crohns runs in my family. I was wo dering if you can help me in any suggestions on whst i should do now? I am left with asacol and co codamol, buscopan, codein , omeprazole and tapper of steroids.. I am terrified as i dont feel heard and being taken serious at all. Kind regards
 
Welcome. It sounds like you need a second opinion. Someone that will pay attention yo you. I am sorry for all you are going through. Let us know how you are doing.
 
Asacol is generally a medication used for ulcerative colitis. It helps with inflammation in the colon and will do nothing for small bowel inflammation. I don't understand why your GI won't treat you? What country is this? Can you change GIs? Go back to your doctor and get re-referred?
 
Hi, thank you for your replies. Its so nice to have someone to talk about it. I am from the isle of man, moved here about 10 years ago. The gi on the island is very difficult. Last appointment i went too i well prepared myself for it. I wrote down everyday food and drink intake, medication, symptoms. He wasnt even interested i. Looking at it and told me with almost a smile on his face i would only suffer from anxiety. In the last three years i have been in and out of hospital , for laparoscopy, scans, blood test, stool test, anx more blood test, the only thing that showed up once was high liver levels. My gp now has tried to transferr me to the uk. Dr morris , not sure if anybody knows about him? Currently i feel like walking inti a&e again and having to explaon everything again, like a broken record. Medical system over here is very poorly, no diffrence between privat and nhs. I was reading up about asacol, and i know its taken time to work but as you say not for small intenstin crohns. At the moment i am writing everuthing down in one big letter. Everything started after me giving birth to my son. And hopfully if i find the right gi i get some help for further investigations.. Its no life living on a cocktail of medication and pain killers. This current flare up has been the worst so fare. I def need a second opinion and throwout diagnostic. . crohns runs in my family, my mother had it who unfortunately passed away from all the complication and side effects. Has anybody also ever experience down below issues due to flare up? Been to gynecologist, osteopath, spine specialist, neurologist they all send me back to the gi. He must have a minimum of 6 referrals. I feel like my whole immunsystem is out of order
 
I am sorry to hear about your difficulties. I know what it is like as I experienced symptoms for 10 years before I got a diagnosis. Have you not had any camera testing since 2011? Like colonoscopy or upper endoscopy? It seems they are the crucial tests you need to find out what is going on. It's good you are being referred to the UK, I'm currently been treated here in Nottingham. If you can't wait I would look at getting a colonoscopy done by a private GI. Treatment you would be looking at would most likely be immunosuppressant drugs like what I am on - azathioprine, which I am hoping is going to get my small bowel inflammation under control. Or biological drugs like remicade/humira. I don't know if they are less commonly prescribed here though but they are considered the strongest drugs you can take.

I experienced uriniation difficulties when I had a perforated bowel and my bowel was stuck to my bladder.
 
No they havent done any further investigation..they are talking about it for the last 3 years but nothing happens. Does anybody know a good gi in the uk? Thank you, good to know i am not the only one. I am tappering of steroids prexnisolone 30mg a day. Taken them for the last two weeks. I am a bit worried oncei M off them that my symptoms get worse again but the gp who hast gor much experience with ibd is trying to help but its limited
 
Two weeks is an extremely short course. Many people are on them for 3 months but there is usually a plan in action. To be honest I would find out about a UK referral or go private for a colonoscopy. If the pain gets like really bad or if you have a fever (I.e a temperature) I would go to A&E and ask for a CT scan.
 
Do you guys think it is a good idea to write everything down in details from when my son was born amd then send it with my relevant reports to a diffrent gi ?
 
Last advise i had from hospital was to come back if i feel worse .. I might do that as i cant try to control it if i am not 100 % sure if its the small bowel. So frustrating ..... Thank you all so much xxx
 
I'm not sure I think the most useful thing would be for you to find out what inflammation levels are for you right now. I would ask your GP to do a stool test for fecal calproctin levels and get a colonoscopy. Hopefully if that shows up with something you can get properly diagnosed and from there find out what's going on with your bladde etc. The first step is the colonoscopy then the rest will follow
 
Ultrasounds are very unreliable. They are okay for detecting some things, but not very sound. Put it this way, my husband had an abdominal/kidney ultrasound done that showed he had a 9mm and ,10mm kidneys stone in each kidney. We went to see a urologist and he did a CT scan and said there were NO stones seen at all! So sometimes ultrasounds can see stuff that is not really there, or it can miss things that are there.
 
Hi everyone :)
Little update on my situation.
On Thursday evening i felt worse and asked myself shoukd i go to a&e or not. Realising then, if i asked myself the question i should go and just surrender to my condition and YES i f**** suffer. So i went. My partner drove me up. After waiting for about 6 hours to see a doctor they admitted me to the ward ( acute medicine) waiting was ok as they tried me first on iv paracetamol , had me straight away on iv fluids and then gave me morphine, which did the trick for the pain for a while. Happened to see a doctor who is only on the isle of man for a week and he straight away listened, supportive and made me feel for once heard. Ok being send to the, ward was first rather stressfull as they then continued to give me fluids and 2 paracetamol taplets for pain relief, despite my records on painkillers and meds. But after 3 hours there were happy to top me up with 60 mg codeine and iv paracetamol. Next morning a whole crew of doctors came to see me, lead dr. Todd i can only recommend him, he was fab. Read all my notes, spoke with me through everything, reassured me and was very honest with me saying, he will not be able to fix me but he can find a way of managing my pain , eliminate side symptoms and get me through this flare up with as much help as possible and refer me to the right specialist etc. Very very helpful. I was impressed! After he put his head together and discussed everuthing with a whoke crew of doctors in front of me , with me. Decisions were made. After him going through my medical records etc and findings. He comfirmed that the first gi is right wity predicting crohns or crohns colitis in the small bowels, which is spreading through my gi track. My gastritis and duonditis alone would not cause all of this symptoms including my big colon inflammations.
and cryptitis. My bloods came back with super high white blood count levels. So yes my body is fighting inflamations. He also admitted there has been an error over the last 5 years in diagnosing me and treating me by THE gi who took over after the first gi retired. As a lot has been ruled out the diagnosis from this point is pretty much on hand. Also the fact that i did feel improvement by being on prednisolone 30 mg for 19 days. Outcome.. He has taken me off co codamol 30/500 and codeine 60mg and omeprazole 40 mg. Due to the side effects of consipitation. And side symptoms of codeine.. Which we all know is no pleasure when you have to concentrate on your breathing in and out as it knocks you out. Current medications and painkillers are... Targinact 10mg/5mg every 12 hours( slow release taplets) they started on a low dose so it can be adjusted to my needs if i need more. continue asacol 400mg 3 times a day, paracetamol up to 4 times a day to support the targinact , and if i struggle to sleep i can take zopiclone 7. 5 mg at night. Which i try not too as it s a horrid horrid sleeping pill.. Scarry stuff! ranitidine 300mg a day, metronidazole 400mg three times a day for 7 days to flush out any infections that might have built up due to flare up. Tapering of prednisolone , reducing every 3 days i taplet . if i will feel worse after tapering off prednisoline they will put me back onto it but its worth a try. Asacol they say , they want to give it a try to work, it can take weeks or month to actually start having an impact on the guts and yes it doesnt cover the small bowels as much but my gastritis and duonditis and big bowl cryptitis may will benefit from it. Referral letter has been send to a surgeon on the island who can also perform a colonoscopy and gastroscopy. The also advised me to get in touch with the spiral clinik in Manchester for second opinion. Need to go see my gp on tuesday( bang holiday here on monday) for another blood tesrt review and continue meds etc. Will have to go to the emergency doctor on sunday for another re prescritption as the nurses messed up my dosages prescribed and the hospital pharmacy was closed by the time the figured it out.. Still i dont understand it but hey ho.. Cant gave everythi g going smooth, lol..... Well the targinact.. Wow wow wow... It is in the family of morphine and a controlled drug, so the sensation of srill feeling the pain but being able to ignore it is great, very sleepy and bit light headed but it shoukd settle after a few days. Last night i had the first time in ages a couple of hours of absolutely no pain or anything.. I fekt great, lol .. What a relieve, i was so relieved i started crying .. I know the pain killers mask it but man its good to feel your own body without agony in a long time. In hospital they intravenous put 5 fluid thingins in me , one after the next.. So now i have to realky focus on drinking lots of water to keep it up. As we all know the inflamations suck our body's dry of fluids... So hopefully next week i get to see the surgeon on the island and on Tuesday i maje an appointment with spiral clinik. I need to keep up my daily diary as it helos the doctor's to understand... Does anybody ekse has got experience witg targinac and ranitidine?? Peace and hopes and strenght and smiles to everyone Julia x
 
Thank you, it is nice for a change to be heard. I hope my body wilk adjust to the painkillers and i can move, as at the moment i more like onky float through the room , its a strainge sensation,have you got any experience with targinact?
 
We have different sections. Is it for the medicine that you asked about? If so, there is a section called Treatment.
 
I'm glad you've been listened to and are on the way to being properly diagnosed.
Please keep us updated.Your story will help a lot of people who,like you,have struggled to be taken seriously.
 
Hi, thank you for your massage. Little up date of mine.... My 3rd day on targinac painkillers, they are working for me. Instead of being constipated i had diarreha again, well more mucus then anything else and from not being able to go for days to 4 bowelmovents. Still the feeling of not bei g able to empty properly but its a change. I figured out as long i take 2 paracetamol about half an hour before the targinac and had some suger and food and drink plenty , iseem to get over the first overwhelming stage of being hit with a brick sensation and almost " do i get headaches or not sensation" followed by feeling heavely sleepy to dizzy.. This all last for about one and a half hours.. Then i start to settle into it.. I try to close my eyes for this time and just try to relax without any outside disturbins ( thank you to my wonderful understanding caring partner) it still comes in waves after that were i need to sit down and just relax but once settled into the targinac, slow release painkillers, it is heaven as i actually get to feel my body without pain or with pain i can easily ignore.. Thank god! The fact i am getting hot sweats, get pail and shakey i put down to the antibiotics, asacol, gastric taplets and steroids i have to take all together at the moment.. Cemical cocktail.. But as long it helps and will get me to remission.. I dont mind... Speaking to emergency doctor today for re prescriptions was a good experience, straight forward :) must admit standing in a chemist having tk show id for my meds was uncomfortable but my shame level by now has tuffened up after 2 hospitalisations in the last 3 weeks. On Tuesday i will find out about the gastroenterologist surgeon and also have the next hurdle of calling my gp for an emergency appointment to be reviewed and to update, re prescription etc. .. But by now they know me by name anyway, lol.. So quick summary on curent meds 3x asacol 400 mg
2x ranitidine 150mg
3x metronidazole 400mg
2x targinac 15mg/7.5 mg
1x prednisolone 20 mg
Up to 4x a day 2x paracetamol
A day

Slowely tappering of steroids to see what happens, otherwise back onto them for a bit longer.

I hope i get more diarreha as bad as it is minimum i know there is no obstruction
Till i see the gi surgeon, hopfully next week.

Good thing is due to targinac, even though i had to go from 5 to 10 and now on 15 mg twoce a day, i do not need sleeping pill zopiclone 7.5 mg in the evenings to find rest. So one less!
My flare started beg of april and is at the moment at its worsed.

I got more mouth ulcers today and had heavy cramps after drinking 3 medium sized glasses of water ( room temperature) some minorminor cramps on the side towards my back but otherwise nothing new. Besides heavely re adressing my diet to help and support my body as much as possible and REST( out of work for 3 weeks now due to this curse of desease)

Thats me for now.. Ill keep you guys updated
Peace and strenght to everyone
 
My story

Oh well.. I thought i could do without sleeping pill.. Now to late to take it as my son will be up early and i minimum need 8 hours sleep on it to function next morning.. Well sitting still awake, only one awake in the house, sweating like a waterfall, hot flushes, clammy.. It sucks.. well can also feel another mouth ulcer coming up.... Deep breaths and i hope i get to sleep to one point.. Just thought to update you all. Its upsetting knowing even though i might hardly feel any pain right now due to pain management changes.. But it only masks the proplem.. And sweating like this.. Feeling another mouth ulcer coming up and mucus bowelmovents today and cramps after drinking water i realise .. Nooo its not over yet.. I feel like a burden to my partner.. Even though he re assures me every day i wouldn't be but seeing him tired and exhausted as he pulls my weight at the moment .. Does up sets me and makes me feel like a burden.. Oh well.. Deep breath again and hopfully sleep comes soon. X
 
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Julia you're so lucky to have a partner who understands.Hopefully,very soon,you'll be on the road to remission and can do all the things you want to.Getting you're meds right is important,and sometimes it's trial and error finding something that works for you.

feel better soon
 
Little update.....
Again no bowelmovements , only the sensation i have to go but everytime i cant, its a awful feeling. My belly starts swelling up again, yesterday i had 2 dizzy/ light headed moments again. Pain is increasing again, lower abdominal and mid belly sudden cramps and constent dull pain, like someone is slowely ripping me apart from the inside, since i got up this morning i feel neusea again and gonna vomit any minute soon and pretty ill, my nose starts running too. Still tapering of prednisolone , this is my 1st day on 15 mg, got the fear i will get worse over the day. Been sweating all night. Can say when i was on 30 mg prednisolone i felt much much better, not sick, no pins and needles , no dizziness , felt fresher and being able to move. Got an gp apointment before lunch time, gonna be interesting to find out what they say. Also found out that my gastroenterologist surgeon appoinment is on 13tg of june, about just over a week. Gonna try and book an apointment with the spiral clinik today in manchester for second opinion.
Well had to postpone my new job again as there is no way i can work like this, i struggle bringing my son to school. Totalky exhausted and felt like fainting after walking 30 meters .
After reading the thread about obstruction etc. I hope there is no obstruction etc coming up or is already there in me.. . Who knows...
Don't want to walk back into a&e so i keep drinking plenty of water but it is Hart having to suffer at home, waiting for it to get better.
I hope my gp can send me to a pain management and dietrition .. In the mean time for some help. Got my notes and quesruons ready for gp.

Ill keep you up dated...

**** time!

With the amount of pain i got i wonder if its just me being very sensitive ( even though i thought i am quier tuff when it comes to pain) or is it just a matter of finding the right meds and painkillers, do i need more steroids or is this obstruction etc or my worsed thoughts has it all turned into cancer( last test been do e 2011) doctors admitted in hospital it has been left fare to long to look into it again..
Has anybody got any thoughts on it?

So worried

Peace and hope and strenght to everyone xx
 
Been to gp and they put up the asacol to 3 times day 800 mg and back up steroids to 25 mg and try again to taper off it in a few days by taken 5mg less for a few days and so on. Got to see doctor cathy dunstan, she is wonderful doctor. Stay longer on targinac 10 mg and top up if required , paracetamol , ranitidine for gastritis , finish antibiotic course. Need to tell gp when i got appointment for spire clinik in MManchester so they know i am gertting seen... So feeling a bit more positive , mainly because of the doctor as she made me feel cared for.. Which is so important!

Ill keep you updated when i know more and anything changes with my body.

Peace , hope and strength x
 
Hi, a little update

No good times.. Not well at all. Managed to go to toilet, porridge , pencil like ( sorry for details) for an hour! but the pain is just so bad, i felt like i gonna pass out on the toilet. My gp ordered an urgent blood test and told me to go up on the steroids sgain 25 mg the level i previously felt better on, not good but better. And left me with handful of prescriptions and told me to double the asacol 3 times a day 800 mg and try again to tapper of the prednisolone in a few days. My mood is all over the place and i keep vomiting and feel extremely fatigue and neusea, it comes in waves i feel like i gonna pass out. My partner and i had an argue about silly things.. Well i guess its me whos emotional state is all over the place. I feel pretty scared and helpless and so ill.. Dont know of i should go to the hospital or not... All i know that the state i am in is not right, i do t k oe if i am reacting badly to one of the meds or the painkilkers?! I dont know. Took only 5 mg targinac as i can not think otherwise. Pain is worse again. Or maybe its just me that i cant bear any pain anymore. Never felt so ill in my life. I asked the doctor if she can refeer me to a dietrition and pain management while i am waiting for further investigation s.. She sad no she only wants to do that when she knows what is going on with my small bowels and how the rest has changed or not changed etc.

I have no idea how i am suppose to get through a day like this.
Thats me for now
 
Sending prayers your way. I have seen it said on here that if you are wondering if you should go to the ER then you should go.
 

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