Crohn's Disease Forum » Your Story » It's been a very long time but I'm back here again


01-13-2019, 06:14 PM   #1
EvieBaby
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It's been a very long time but I'm back here again

Hi everyone,

I feel like I'm a new member here I haven't been on in such a long, long time. So I thought it best to reintroduce myself because I can see I'm going to be on here a lot more in the coming months.

I was diagnosed with crohn's in 2005 when I was 26, and now I'm 39 and a heck of a lot worse than I used to be. I've had a lot of things going on in my life, but I'm now at a point where I feel like this disease now has control of me rather than the other way round.

Last year I switched hospitals because the one I was being seen at became less than useless, they just stopped being interested in any problem I had and when I used to call them for help they just stopped replying. I've been going to Manchester Hospital since last April and things seemed to be going ok until recently.

I've been on infliximab for about 2.5 years, and I've repeatedly said that I don't feel it's working for me but there doesn't seem to be any option available to me to change this, despite having talks with the IBD team who mentioned other treatments available. For the last 4 months I've been intermittently really poorly, waking up absolutely drenched in sweat, terrible control on my bowels, losing blood, being excessively tired, not able to eat etc, but my GP kept putting this down to urine infections and gave me antibiotics. Because of this I've not had my infliximab infusion since September last year.

I've seen the IBD nurses at the clinic and they think I should see my GP for further investigations, my GP thinks my problems are crohn's related and should be dealt with by the hospital. In the meantime, no one is helping me, carrying out any tests, and I'm stuck at home alone with a 10 year old who I still have to care which is incredibly difficult. I've had to take more time off work which isn't going down very well, I'm finally a victim of the people who think that because I 'don't look ill' that I'm making it up.

I decided I wanted to come back here because I feel like I just really need to talk to people who know exactly what I'm going through, who have experienced what I have and can support me, and I can support them, and get through this really crappy time!

This post was never meant to be this long!
01-13-2019, 07:04 PM   #2
cmack
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Hi Evie,

I read the whole thing and it wasn't that long. I'm sorry for what is happening, it sounds like you are being fobbed off. Is there any way to consult with another GI? You know your body best and I hope you can get another doctor to delve further into this. It really sounds as if you need a different medication regimen. you have my support, come here to talk any time.


Best Wishes,

Chris
01-27-2019, 02:09 AM   #3
beyondSymptomManagement
 
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Never give up on looking for a better doctor. In my journey I had to go through 12 doctors before one entertained the idea of the treatment I sought. It took probably another 5 doctors after that before I found someone who had some experience with it. Now I feel better and in a much more stable condition. Keep your chin up, the next generation of medicine for this condition seems promising.
01-27-2019, 11:54 PM   #4
angree rabbit
 
Join Date: Jun 2018
Location: Australia
Yeah, never give up.

I too went through several doctors before a meeting with a knowledgeable surgeon ( anal fisture ) several years back.
He put me on Imuran ( different names for this )
Just this has given me back my life. Some relapses every 12 mths or so, but nothing like before.

So hang in there and maybe hunt up someone that is more familiar with your situation.
P.s: I cut out sugar except 1/4 tea spoon in tea. Cut out milk also. Been 18 mths no assoc prob's. Read about diet on this forum.
Regards
01-28-2019, 03:09 PM   #5
wildbill_52280
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Sorry to hear things have taken a turn for the worse, it would be a good idea to avoid antibiotics from now on as any alteration to your microbiome, the good bacteria in your intestine, could be further damaged by them.

Dietary changes like avoiding lactose(milk sugar) and refined sugar might help reduce some symptoms. eat a small amount of cheese and take calcium supplements, as well as cooking greens like collard, kale, turnip can help you get calcium, these should be cooked and not fresh.

Vitamin d supplements can help reduce some symptoms as well, people in this small study took 5000iu for 6 months and cdai dropped avg 100 points. https://www.ncbi.nlm.nih.gov/pubmed/23594800

Learn to avoid chemicals like preservatives, artificial sweeteners, emulsifiers which have been linked to the development of IBD and other diseases.

Oats, broccoli, wheat, seem to all agree with me the best, some veggies make me worse like cauli, brussel. soem of these ideas about carbohydrates come from the SCD diet and book breaking the vicious cycle, which has been proven by science now to help ibd.

I make a tea from ginger -1 tablespoon, turmeric -1 tsp black pepper- 1/8 tsp which also reduces symptoms. I boil it for 30-40 min then cool and let the particles settle on the bottom, i pour off the top liquid then filter what remains in a coffee filter. Many more tips to share, if your interested I have more. ten years medication free for me.
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02-28-2019, 08:42 AM   #6
AlvinElias
 
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Location: Canterbury, United Kingdom
Hi,

I've had similar issues and have been seriously let down over the last few years. Although it is difficult sometimes you only get somewhere by complaining with a well reasoned argument and make sure you:

1) are your own advocate (research and be as well informed as you possibly can, I hate to say it but I think there are so many lacklustre consultants and medical professionals now, you simply cannot take the chance, don't get me wrong there are also some amazing ones but alas the ultimate risk sits with you and not them).
2) don't let them fob you off be it treatment, explaining something or re any element of your care.
3) write down a list of questions for each appointment and ensure you are not rushed. Take your time.
4) don't be afraid to insist (politely) that you want them to consider and explain to you what tests can be done/other treatment options are available, or failing that a comprehensive explanation if you are worried about any element of your care.
5) read up on the NICE guidelines (if in UK) and be prepared to challenge them as to why they are not adhering to them or have failed to consider them in your treatment plan.
6) consider speaking with PALS (NHS charity that deal with poor care and disputes) if you aren't getting anywhere.
7) don't feel you cannot ask for a second opinion even if he/she states they are the 'head' consultant. It is irrelevant.
8) consider a friend or supporter to go with you if not feeling up for a direct approach. Again this will often put them on the back foot to some degree.
9) consider making notes. You will be amazed at the impact this will have on anyone within Public Services if you sit there making notes.
10) get the consultants secretary number! You will be amazed how often - if you are really ill and need an appointment brought forward by keep pestering the secretary often - there will be cancellations.

Although consultants (certainly within the UK) are seen as these high individuals that harbor some divine gift, they are as human as you or I. As such they are not infallible. Although it is not preferable to have an adversarial relationship with your care team, sometimes it is one way of ensuring you are being dealt with correctly.

Chin up. One thing I've found is that you are going to be infinitely stronger even at the times you perceive yourself to be as your lowest/weakest from this disease, far more so than you imagine. Half of the people I encounter complain about daily slights and mundane worries and are unable to cope with everyday minor issues, which highlights that this disease and your management of it just serves to make you a stronger person far more so than the majority out there.
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03-07-2019, 09:32 PM   #7
cmack
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Anybody that needs help can call on me. I'll try to help any way I can. Pm's are fine, I understand privacy. Cheers!
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