This is me

[Cavatina]

Had Crohn's since 1996. Six major ops and ileostomy from the start. For the last few years, joint pain has been getting worse and at last, after nothing else worked, I've been given Buphrenorphine patches. It took a while to get to the right dosage and brand - had lots of side effects such as headaches, depression etc. but I'm fairly happy with current one = 35mcg Transtec. They help with the pain but I feel sick every morning. No-one seems to realise that Crohn's causes all the other stuff. I've just had physio for a painful hand - have just read that's caused by Crohn's as well - great joy!! Also, I've read tonight that Crohn's victims are advised to get tested every three years for bowel cancer as it makes us more susceptible. Can't believe I've never been advised of that.
If anyone out there has any thoughts on the above, I would be thankful.
I'm pleased to have found the forum. Look forward to discussions.

 

[David]

Greetings and a most hearty welcome to you

Yes, Crohn's Disease can lead to a variety of issues. In my opinion, many of those issues are a result of short or long term deficiencies in various vitamins, minerals, and other nutrients which people with CD are more likely to experience than the general population.

For example, have you had your vitamin B12, folate, and vitamin D levels checked? Those are three common deficiencies people with CD experience. And vitamin D deficiency can lead to joint, bone, and body pain and B12 deficiency can lead to peripheral neuropathy which might manifest as a painful hand.

Again, welcome I'm so glad you joined!

 

[Angrybird]

Hello and welcome to the forum :bigwave: I don't have anything to add as David has already mentioned the things I could think off.

I also have never been told by either my GP or GI doc about routine checks for cancer, like you it is only through my own reading up on the disease that I was aware of this increased risk with crohns.

Really pleased you have joined us here and I hope you find it as helpful and supportive as I have

 

[Cavatina]

Great to hear from others!

Thanks a lot for your response guys! I'm now convinced there really is someone out there and it feels good. Reassuring - I've never done anything like this before - thought it wasn't for me - but it was great to feel that you were really interested in what I had to say. Anyway, less of the schmalttz!! I have been regularly checked for the vitamin deficiencies you suggested and think I'm doing the right thing, taking supplements, tablets etc. to counteract anything lacking. It's very difficult for me as I only have 6 feet (2 metres) of small bowel left. Obviously it is not easy for me to absorb the correct amount of goodies. The doctor said that I have osteoporosis and osteoarthritis, caused by Crohn's. The pain is bad tonight - new patch not due until Thursday. Don 't know what to do for the best. I do exercises every day, swim once a week and walk as much as possible so as not to sieze up. Anything else I can do?

My medication etc is: Lanzopresole 15g one a day, Mebeverine one a day, Domperidone, for sickness any time. The patches, Transtec 35mic.(Buprenorphine) every four days, Risedronate once a week, Glucosamine Sulphate 750mg one a day, Cod Liver Oil 1000mg one a day and a multivitamin once a day.

Thanks again - Chris

 

[David]

I'm glad you're enjoying our little community

Hmmm, with that little bowel left, yes, deficiencies are going to be an issue. You said that you were tested for B12 and D? What were the exact levels of the last test? Were they normal? Because what you listed in your medication/supplement list likely wouldn't alleviate such deficiencies. I'm happy to elaborate why but first, let's determine if you are indeed deficient (I suspect so).

 

[CLynn]

Cavatina, my specialist never told me about the increased cancer risk either, my sweetheart of a cousin found it while researching my Crohn's (was just worried for me) and he told me. Hate to hear about your pain, my arthritis pain comes and goes over the years. Right now it's the sciatic nerve bothering me, but doubt that is related to my Crohn's.

 

[David]

Right now it's the sciatic nerve bothering me, but doubt that is related to my Crohn's.

Ever try self massage?

 

[CLynn]

I haven't, David...have been trying to get my husband's sympathy for a massage, but so far, he hasn't taken the bait, lol!

 

[Cavatina]

Thanks

Hi David and C Lynn. I'm sorry I have no idea of my levels. I'll need to speak to my consultant and find out asap. I'll come back when I find out. It's a good point - you obviously know more than me about the technicalities. Thanks

With regard to the sciatica - yes it is connected! I get it, off and on, connected to the back pain, which is osteoporosis and therefore crohn's related.Wow - it's such fun. Good luck with the massage persuasion!!
Chris

 

[David]

Sounds good. I've subscribed to this thread so will respond when you get your levels

 

[ohmuggy]

I was diagnosed with Crohns 35 years ago and up til 2005 it didn't bother me too much. Since then it's got worse, blockages, at least 2 a year, since then. In April I had a small bowel resection done. It was suppose to remove a small stricture but in the end I lost all but 6 feet of small bowel and lost part of the large bowel as well. Though I feel tired most days and spend an awful lot of time in the toilet I can honestly say it's the best thing I've ever had done. I'm still on methotrexate injections weekly and humira every fortnight but I feel as though I've got my life back. I have b6 injections and iron supplements and touch wood, so far I've been fine. I'm hoping that if the Crohns is in remission my arthritis will ease off a bit, fingers crossed. I hope you start to feel better soon.

 

[Cavatina]

Hi David and all. I never found out my levels as my consultant was reluctant and didn't answer my question when asked. She was, as normal, rushed off her feet! Anyway, Now I still have the pain and the nausea is much worse since I went on Methotrexate. I inject myself once a week. Still on the Butrans patches and in order to do most things I have to take Paracetomol as well. I have a rheumatology appointment at the end of October and, as they've increased the dose of Methotrexate and it doesn't seem to be working, they think 'something else might be going on' so will 'vet' me well then. I'll keep you posted but I'm really 'down' and still hoping they'll find a way to help me.

 

[David]

Awww, you poor thing I'm so sorry you're having a rough time of it

I hope they get things figured out soon.

I'd push them to test your vitamin/mineral levels over again so you can make sure you're ok.