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Had quite enough

A

alisonwilkinson

Hi my name is Alison I am 29 and have had crohns disease since 1999. I was put on every drug going nothing worked. I was had a tube in my stomach and that didnt work. In 2003 I went into remission with no medication. I did really well until 2010 and then I got iritis. My crohns decided to flare in July 2012. I had colonoscopy, gastosomy and mri done which shown superficial ulceration of the ielum. I was put on 6mp for one week. It sent my liver function test up to 400. I was taken stright off it. This was 18 December as of yet my liver is still not back to normal. It went to 400 then came down to 75 then went back up to 600 then back down to 120 and now its 400 again. I have really had enough. I am on no medication and will be starting Humira when or if it goes back to normal. Going to see consultant tomorrow but she has already told me she is doing nothing until my liver is perfect. I feel like crap got blood etc. Sorry for the moan.

Alison :(
 
tobyjug

tobyjug

Location
UK
Hello Alison,

moan as much as you want, you will always get a good hearing on here. How did you get on with the consultant today, hope it went well. Not so good about your liver results, what is being done to stabilise it, is there anything that can be done.

I'm still quite new to the crohns/ibd story and for now everything is quite stable. My slight dread is the future, my IBD is mild to moderate and intend to keep it this way, but I notice you had a long period of remission. Were you more or less stable during that period.

Anyway, good luck, hope it went well and maybe we will hear how you got on soon.

Tobyjug
 
rollinstone

rollinstone

Hi alison, sorry you are feeling so bad ATM, try and get ahold of some max GXL - it's. Glutathione supplement (contains the precursors for the body to make glutathione) the liver uses more glutathione than any other organ in the body, and by the sounds of it yours could use a hand
 
Sybil Vane

Sybil Vane

Location
Virginia
Moan all you want!! That sounds awful and I'm sorry these meds have messed with your liver. That is very scary. I'm on Humira and Imuran and I'm super worried about side effects. I hope your tests come back normal very, very soon.

Sending big hugs!!
 
A

alisonwilkinson

Hi went to see consultant. My consultant is really worried about my liver so she was going to speak to a liver specialist last Thursday. She thinks there might be something wrong with my liver. She was talking about liver biopsy but wants to check first with the liver specialist. When I was in remission I had no problems. I could eat whatever I wanted and lived life to the full. Thanks for all the replies.

Alison
 
J

juljul

Hi Alison,
Sorry to hear about your liver and not being able to get treatment because of it - though it is perhaps understandable because the liver has to work hard to metabolise all drugs.

There is milk thistle - it is supposed to aid rejuvenation and repair. L-gutamine is supposed to boost glutathione synthesis in the liver - glutathione is important for detoxification and rejuvenation. Also, rooibos tea might boost glutathione if you drink enough of it. L-glutamine is a supplement that is supposed to help heal a leaky gut also.
Try not to worry because it won't help ...easier said than done I know.
:hug:
juljul xx
 
A

alisonwilkinson

Hi thanks for the reply. I am willing to try anything that will help. I will look into Milk Thistle and the tea. I just hope that I dont have liver disease. I am quite aware of the list of other illnesses associated with Crohns Disease. I have the Iritis and pain in my hands which I think is to do with Arthritis. I am just hoping that soon I am put on some kind of medication and put in remission again. I suppose I have got to think positive or I will get depressed which I have had in the past and dont want it again. Here is to thinking positive.

Alison
 
J

juljul

Hi Alison,
I think a lot of arthritis in connection with Crohn's in particular is reactive arthritis...from bugs in the system having come by way of the gut - probably from a leaky gut scenario. Though not everyone with Crohn's will have it and it is difficult to prove. Have they tried you on azithromycin (you might like to read my last comment :::here:::). Are they treating your iritis? You could ask your eye doctor if (s)he is willing to try you on optimmune. It is a veterinary formula but some doctors do prescribe it to humans I do believe (perhaps few are willing though) for problem eye inflammation, and it has to be worth a try over steroids for long term use because steroids are not without their side effects. I don't think restasis singles are available on the NHS (not yet anyway - and very expensive). And unfortunately in the UK we don't have formulating pharmacies - unlike the US. You could ask about the Restasis singles first however - you never know. You could also try wet cooled plain tea or chamomile tea bags on your eyelids and leave in place for at least five minutes maybe twice a day.

Best wishes.
juljul xx
 
A

alisonwilkinson

Hi just a update. My GI is now saying all my symptoms are to do with the liver. She has referred me to a liver doctor. The doctor has been on holiday for the past week. she came back to work on Monday read my notes and gave me a call to say have a liver biopsy tomorrow we think there is something wrong with your liver from the 6mp. I got this call at 850 and then at 1030 was told they cant do it tomorrow and she is very fustrated because my blood dont clot around my body quick enough. She told me to come down still because she needs to talk to me. I was told that my old doctor at Kings Mill needs to talk to the blood doctor at QMC and decide if I can have a standard biopsy with medication or if I need a biopsy through my neck and put a tube into my liver. She said this needs to be done latest 1 to 2 weeks. She really sounded really concerned I am extremely nervous. I just hope there is nothing wrong with my liver. Thanks for reading.

Alison
 
J

juljul

Hi Alison,
Try not to worry or stress because that won't help. I believe the liver can regenerate as long as it has not reached stage four liver disease with advanced fibrosis. So try not to worry. You have to find all ways to get your stress levels down....surround yourself with the people who make you happy, engage in a a good hobby that makes you relaxed, meditation, etc.

Look into adding curcumin to your diet in addition to the other herbs.:
http://www.naturalnews.com/037489_turmeric_liver_regeneration.html
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2241785/

Sending healing wishes your way too. I'm a believer so I will pray for you.

Best wishes and (((hugs))).

juljul xx
 
A

alisonwilkinson

Hi thanks for the support. I think it was the urgency I was getting worried about. I am trying my best to not worry. I know that wont help with the Crohns. Thanks again.

Alison
 
Artisan105

Artisan105

Yondaime
Wow... I am sorry your liver is causing you so much problems on top of the Crohn's. Typically your liver gets worse because your Crohn's due to all the medicine/ harsh immune-suppressant drugs we take. Oh geez.

I wish I could cut my liver in half so you can have it :]

Hang in there Alison. God bless.
 
Honey

Honey

Moderator
Staff member
Hi there,
I hope all goes well for you and you start to feel better soon. It is natural to feel anxious about tests!!! I too have shed a few tears behind the scenes. This forum is great for venting your feelings!! Let me know how you are. Best wishes.
 
A

alisonwilkinson

Hi thanks for everyones support. I really appreciate it. I will feel a lot happier when I have had the Liver Biopsy and get my results and hopefully look at getting myself better. I think its just hard the time leading up to the procedure. Thanks again.

Alison
 
alex_chris

alex_chris

Hi Alison, I hope the liver biopsy will work out well.

Just a curious question, in your OP you said you were on 6mp only one week? Was that really determined to be the reason for the liver function out of range results? Did you do regular blood tests before going on 6mp?
 
A

alisonwilkinson

Hi i was on 6mp for 10 days on a low dosage of 25mg for 1 week then 50mg for 3 days. I have been told that the 6mp caused the liver function to go really high. Ive been told that on my Ultrasound it shows fatty changes and an inflamed liver all caused by 6mp. Thanks for the support.

Alison
 
A

alisonwilkinson

Hi I forgot to mention about the blood tests my doctor did bloods every 2-4 weeks from July last year when I flared up with my Crohns Disease. They did a test to check the enzyme levels to see if 6mp was likely to work on me this indicated things would work. I guess no test has 100% guarantee though. Thanks again for everyones support.

Alison
 
yc_angel

yc_angel

Wow...I'm so sory the 6 mp caused such a severe reaction n your liver..
I hope everything goes alright with the biopsy.
Sending allot of positive vibes your way. :)

Xx
 
A

alisonwilkinson

Hi had my Transjugular liver biopsy yesterday. I was first one to have it done. I had no sedation just a local anesthetic. I had to stay in medical daycare unit for five hours after procedure then was allowed home. I have been told not to lift anything and to take it easy for a few days. Get results Thursday.

Alison
 
A

alisonwilkinson

Hi thanks. No pain just a stiff and bruised neck. I am trying to think positive. I just hope I can start feeling a lot better soon. I have a partner and 2 children who need me to be well.

Alison
 
A

alisonwilkinson

Hi just got results my liver appears normal which is really good news. The consultant is checking my biopsy herself on Tuesday but is confident the person who did the biopsy knows what he is doing. If she sees anything she will be in touch. If she finds it appears normal I will be put back in the care of my crohns consultant. I will have to have regular blood tests and seen by the liver doctor every 12 months. I will need to have yearly biopsies to. Ive been told that if I dont get regular monitoring I could have Cirrosis in 15 years time. But so far no treatment needed. I suppose they are keeping an eye on me. Ive just had a good cry to get all the stress out. The last few weeks have been a nightmare. Thanks for reading.

Alison
 
yc_angel

yc_angel

Thats good news that your liver is working properly..
I hope the second look at the your biopsies go well 2.
There is nothing wrong with having a good cry...it realy does help get it all out.
Relax , keep your head up and hang in there :D..

Xx
 
A

alisonwilkinson

Update

I came down with a stomach bug last week. Its caused a flare up of my crohns disease. I am back to the rice,chicken,rice cakes etc diet and have an appointment to see IBD nurse and consultant on Tuesday. I just hope now that I am put on some mind of maintainance medication. I have lost 2 stone since last July. Ive gone from a size 14 to a size 10. I am 9 stone which sounds good but I am losing weight all the time. Thanks for reading.

Alison
 
A

alisonwilkinson

I have just been to see consultant. She said I have a decision to make. She wants me to start infliximab in two weeks. I have two young children at school and play group. She said to me is there any way I can get someone to look after the children why I come into hospital and have infusions. She said that if I cant get anyone to look after the children and it is going to be to stressful then go on Humira but her number one choice with my weight loss is Infliximab. The nurse is going to ring in a few days and I need to have made a decision. She said the infusions would be 3 close together then after 6 weeks then every 8-12 weeks. I would be in the hospital for half a day. Thanks for reading.

Alison
 
A

alisonwilkinson

UPDATE

Im now on infliximab every 8 weeks. I have been cut from 12.5mg to 10mg Methotrexate because it was making me tired for 3 days after taking it and bloods not good. Nurse told me i should be on 25mg but cant give me that because of the issues with my liver. I have been told to do a calproctin test 4 weeks post infliximab then on the day of my infliximab and then a week later to check if i need to be on infliximab more regular than every 8 weeks. My haemaglobin is low so had blood tests today and if i need iron its got to be through iron infusions as I cannot absorb iron tablets due to activity of the Terminal Ileum. All in all i am doing a lot better than i was. I can now function whereas before I couldnt. When i told the doctor i am doing better she said yes but you did look half dead. :)
 
nogutsnoglory

nogutsnoglory

Moderator
alisonwilkinson said:
UPDATE

Im now on infliximab every 8 weeks. I have been cut from 12.5mg to 10mg Methotrexate because it was making me tired for 3 days after taking it and bloods not good. Nurse told me i should be on 25mg but cant give me that because of the issues with my liver. I have been told to do a calproctin test 4 weeks post infliximab then on the day of my infliximab and then a week later to check if i need to be on infliximab more regular than every 8 weeks. My haemaglobin is low so had blood tests today and if i need iron its got to be through iron infusions as I cannot absorb iron tablets due to activity of the Terminal Ileum. All in all i am doing a lot better than i was. I can now function whereas before I couldnt. When i told the doctor i am doing better she said yes but you did look half dead. :)
Click to expand...
It's always great to hear good news :) I hope you continue to climb back into health and feel even better day by day.
 
Honey

Honey

Moderator
Staff member
Hi there, So glad to hear you are improving. I am on Infliximab infusions every 8 weeks, and am doing well. Just tire easily. I hope you start to feel a lot better soon.

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