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Crohn's Disease Forum » Your Story » Carnt cope any longer


04-29-2014, 08:31 PM   #1
missywilcox
 
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Carnt cope any longer

Don't no we're to start I became I'll Dec 99 after being so sick that my doctor demanded me to go see him has he wanted to see for himself the pain I was in I cudn't walk after 2 yrs I was finally diagnosed with crohns disease ever since av sufferd terrible I was given prednisolone ten yrs I was taken them for this disease in between time i felt like i was getting used as a guinny pig all different meds from imflixamab,azo as nd a few other meds up an down on dosage of steroids,nothing was getting better to the point I didn't want to go to my hospital appointments all they did was keep me in for 2 wks give me my meds that's all they done, they wasn't trying to get it under control ad be coming home no better so wasn't any point going anymore crohns disease got the better of me,I looked 9 months pregnant the riggling all over my stomach ud swear it was a baby but it wasn't I was rushed in for emergancy surgery it was my bowel wriggling round this was same time the consultant told me that why av bin on steroids for past ten yrs he never no as they we're doing nothing for me,surgery went well I still to this day don't no what they done what they operated on,1st yr past all good fell pregnant 25wks into pregnancy I was rushged for emergency c section baby came way to early just under 3lb my little flossy weighed she 6 now my flossy but am still suffering am going toilet 10-15 times in a hour of a morning am so unhappy. Constantly uncomfortable terrified to eat cos to painful afterwards go in toilet I am giving up avent the strength anymore me an my kids dad split up 2 yes ago after 16 yrs its hard for me ad to move home twice on my own with mm kids feel like I can't carry on its ruining their lifes ,I don't no what corner to turn
04-29-2014, 09:20 PM   #2
theOcean
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I'm so sorry to hear that you've been struggling for this long and that no medication has been helping you. Are you on anything now?
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04-29-2014, 09:28 PM   #3
Trysha
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Hello Missywilcox
Welcome to the forum.
You will get lots of help here and find new helpful friends.
I am so sorry to hear of your poor treatment with the health system over there.
There are some very good GI specialists and I don't know what they have been doing, maybe not doing to make you more comfortable.
Your system will still be trying to recover from the baby and having active crohn's as well must be very debilitating to say the least.
Have you had your blood tested for hemoglobin and iron levels, as well as vitaminB12
levels---in fact the whole set of blood tests that are done at regular intervals for Crohns patients.
Are you able to get some help from social services?
Have you tried talking to your doctor to see what kind of help is available to you especially for the children
You do need regular visits with a GI specialist and they must find ways to better control your crohn's.
There will be other members along to give their experience and advice.
My heart goes out to you and I really hope you will soon get some help.
Feel better soon
Hugs and best wishes
Trysha
04-29-2014, 10:27 PM   #4
missywilcox
 
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Aww thankyou for the reply,i stopped taking my meds I didn't like side effects I was experiencing from azathyaphrine spelt wrong,am resus negative constant blood test white cells wer high also my pulse was always very fast my 1st consultant Dr walker was excellent he had time to listen then he past away I av never seen same consultant always a different one an I was embarrassed repeating myself all the time felt like giving up I still feel that way
04-29-2014, 10:29 PM   #5
theOcean
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If you feel like the Azathioprine was affecting your heart and your white blood cell count too severely that makes sense, yes. It sounds like you were really never given the care or attention you deserved.
04-30-2014, 02:43 AM   #6
missywilcox
 
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I just want to be able to get up an do something with kids without a in to plan round making sure there a toilet near,am only 35 I don't want to feel unhappy all time but am really terrified now past few weeks wen avv been loo others bin blood there an last night I was vomiting blood up
04-30-2014, 05:40 AM   #7
valleysangel92
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I'm so sorry to hear of what you've been going through *hugs*. Its awful that you keep getting passed around to different consultants, that is one big issue with the NHS, continuity of care is hard to find.

Vomiting blood suggests to me that you need to be seen sooner rather than later, do you have a GP that you trust? Talking to them about how you are feeling could help as they can get referrals in to the hospital and hopefully get you in under one medical team rather than you having to see different people all the time.

Don't be afraid to go to the A&E if things don't improve or you continue to vomit blood, I know hospitals are not fun places, but it might make your doctors sit up and listen to you and could be a way to get some continuity. My trips to A&E made my consultants take me far more seriously, they know we don't go there for fun.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

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Non CD meds - Gabapentin, paracetamol, ventolin
04-30-2014, 07:15 AM   #8
missywilcox
 
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My GP dusnt really give his patients the time of day its like he there cos he no choice,I do talk to my parents an best friend but they can only try to imagine how I feel plus don't want my parent to be worrying,thank you for replying aswell
04-30-2014, 08:42 AM   #9
Allison M
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I'm so sorry for all you have been through! I hope things get easier for you all the way around.
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04-30-2014, 04:37 PM   #10
missywilcox
 
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Thank you so much x
04-30-2014, 05:09 PM   #11
valleysangel92
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I'm sorry to hear that is there any chance that you could switch to a different GP? It really doesn't sound like you are getting the care you need and deserve. I'll have a look about and see if there is anything I can come up with for you. Please feel free to drop me a message if you need someone to talk to.
04-30-2014, 05:44 PM   #12
missywilcox
 
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Much appreciated xx
05-01-2014, 02:44 PM   #13
missywilcox
 
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After going to see my gp today he referred me to a different hospital ,They are starting me on new steroid an also got to have a scope so my new consultant requested my medical notes from previous hospital even sent a driver to collect them for quickness an GUESS what they can't find my notes how convenient is that
05-01-2014, 02:46 PM   #14
valleysangel92
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I'm glad that things finally seem to be moving for you! Please keep us posted on how things go.
05-01-2014, 02:52 PM   #15
missywilcox
 
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Massive thank yousto all of you wudnt of ad the guts to go its all your comments made me think xxxxxx
05-01-2014, 05:55 PM   #16
Trysha
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Thank goodness you have found a more caring doctor.
He will be able to manage without your previous notes but it would be better if he has them.
Doctors can always get at each other if the need arises and your notes will turn up sooner or later.
Try and get copies of reports for the future so if for any reason you have to change again you will have all the salient points available.
Feel better soon
Hugs and best wishes
Trysha
05-01-2014, 06:14 PM   #17
missywilcox
 
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Awe bless thank you maybe it would be good idea to start thinking about myself an look after myself massive hug xx
05-01-2014, 06:52 PM   #18
wildbill_52280
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if you are ever interested in trying a fecal transplant, i would be willing to help you figure out how to do it.

http://www.crohnsforum.com/forumdisplay.php?f=29
05-01-2014, 08:00 PM   #19
missywilcox
 
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What is that
05-01-2014, 08:03 PM   #20
nogutsnoglory
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Missy, fecal transplants are not approved for crohns yet. Essentially its taking the poop (a dense probiotic) from a healthy family member and having it implanted in your colon. There is research as to whether it is effective but if one were to partake it should only be in a clinical setting and protocol must be strictly followed. Doing this at home is downright dangerous.
05-02-2014, 07:15 PM   #21
wildbill_52280
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Missy, fecal transplants are not approved for crohns yet. Essentially its taking the poop (a dense probiotic) from a healthy family member and having it implanted in your colon. There is research as to whether it is effective but if one were to partake it should only be in a clinical setting and protocol must be strictly followed. Doing this at home is downright dangerous.
You are right, I should probably not encourage people to do this on a large scale, it was just my instinct to help. Also to note, there have been no reports of severe adverse affects in the studies that have been done so far, and some degree of success has been found. If we made a decision based on the existing evidence you would see that no severe reactions have been reported. But more evidence is needed and we will have this when the studies are completed in the next 2 years.

My apologies! but feel free to learn about fecal transplants. if they were as dangerous as nogutsnoglory says they are, why would one of the first human trials be on pediatric crohn's disease patients if the researchers thought it was dangerous? and also, fecal transplants have been used in at least 200 cases of c. difficile with no adverse reactions either, this treatment is not as new as one might think if you were to study it, you would know more about it and be less afraid. but of course, some caution should be taken.
05-02-2014, 07:21 PM   #22
nogutsnoglory
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It's certainly extremely encouraging wildbill and I'd like to see continued research on the matter. That being said I think it's important this is done in a clinical setting and that testing is done and the materials are all sterile to ensure safe implantation.
05-03-2014, 06:55 AM   #23
missywilcox
 
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I see what ur saying but ad only do things under hospital,av only a fraction of bowel left,but am sure once its 100% effective then maybe see the outcome
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