Where to go with this, treatment isn't working

[theability]

The road has forked for me again, No need to say that I have been in the hospital numerous times in the last few weeks let alone the time in the last year.

The DVT in my right arm has thrown a curve ball causing major effects upon everything in my body.

My questions are of what do the fellow crohnies think I should do?

Current problems....

1.) DVT right arm fromm IV start and cellulitis, on Coumadin Therapy.
2.) Bleeding anal tear and Fissure problematic for INR and anticcoagulation issues
3.) Insulin dependence due to Chronic Devil usage of prednisonem, which i will be on until i can be off the Darn steroids
4.) Imuran Therapy, 75mg, QD is this working?


I am on so many medications now that I loose track of the things i am suppose to take, I am large quantaties of narcotics, 80mg OxyContin a day plus 20mg norco for breakthrough pain, up to 200mg per day of narcotics.

I need something to change, I am in so much pain, my symptoms have come through again despite all the Prednisone and the Imuran.

What would you suggest??? I need a change and fast....

 

[My Butt Hurts]

If you're still having symptoms on pred, I would have to suggest one of the biologics - Humira Cimzia or Remicade. Imuran can take a while to even start working, if at all. I don't hear a lot of people on here having luck with it.
No suggestions for the 1st 3, sorry, but if you're in that much pain, you need to be on something else I think.
Good luck, hope you feel better real soon.

 

[theability]

I am at such a lose, to much going on for me right now. I am about to ask for a resection and take that terminal illuem out! :voodoo:!!!

My Internal Med doc is writing up my orders and the bed thing is on the way.

I just moved into my new place yesterday and I spent all day in the bathroom on the toilet!!! nice bathroom i must say!

I just ask, seriously god, what will it take to get me healthy?

 

[theability]

I just heard from my nurse my room here at the Brackenridge resort is open once again,, wonder what room that will be........this is just such torture, in two months I have been here 27 days, this is insanity.....

 

[theability]

I think its time to request , humira, or take the F'er out, I am no fan of the side effects of remicade and I would rather not do the remicade since so little have long lasting effects.

I am beyond frustrated, I just moved into mu new place and here I sit in the hospital again!!!

 

[MaskdMarvl]

Im at a loss for words here. Your in hell. Ill give you this, What does'nt kill you makes you stonger. Everything passes in time, And the sun will rise again. I used to relax with my music in the hospital, and reflect on my life. 16 months straight. Keep your head up, your going home for good soon ! Man your a trooper.

 

[D Bergy]

You could try Miracle Mineral Supplement. It is not an approved treatment for anything, but it kills bacteria like nothing else.

I still use it once in a while to clean out my guts.

If you use it, do it slowly. It is very powerful. It is an alternative treatment method and there may be some unknown risk factor, so investigate it thoroughly before use.

Dan

 

[soupdragon69]

Hmmm am just thinking off the top of my head here....

Pain is a huge issue that needs to be addressed and soon for you Ability..

This might sound stupid but is the pain abdominal i.e. terminal ileum or fissure area only or both? Is there a pain management specialist either within your gastro team or the hospital that could review your meds? One of my gastro nurses told me a few months back that gastro teams around the world are realising that there is a group of patients that are never pain free and it needs to be addressed with more than just medicine and painkillers and it was a huge topic at a recent convention she went to in Brussels. Another thought might be to try something like a TENS machine on your abdo or back low down to help with the pain. Starting out at a low pulse and working up. It was one of her suggestions to me that I have yet to feel I need to try.

It might also be possible to use something like amitriptyline or gabapentin in low doses for any nerve related pain you have abdomen and rectal wise but they need to review it for your personal case in relation to your coumadin therapy and antibiotics and also in relation to slowing down of your gut if you take them too. If you have spasm are they giving you an anti spasmodic? Are there specific foods that make your gut spasm more that you could avoid? Have they checked to see if the spasm could be caused by any of the meds you are already on? It was one my GP raised last year with me and he stopped one of my asthma meds for that reason believe it or not!

Chronic intense pain needs multi-faceted treatment so it means more than one med or approach like mentioned above - even if some of it sounds daft.

To be honest from my perspective it doesnt matter which of the biologic treatments you look at - be it remicade or humira both have their drawbacks as do all meds. I have been on remicade since May 07 and yes I am 6wkly and yes I deteriorate 10-14 days before it is due again but it has dramatically improved my life on the asthma, crohns, skin and joints front - just not enough. For me though I guess it shows how ill I was overall and how much help and "tweaking" I still need (pondering out loud). Keep in mind Imuran can take 3-6mths to work...

I hate to say this but it is possible you will remain insulin dependant even after withdrawal of steroids....

Have they got you on antibiotics that are interfering with your Coumadin (warfarin)?

Have you tried elemental diet?? It really helped me to have some pretty immediate relief because it is predigested so you dont have to work to absorb it and being absorbed in the first metre of your small bowel means your terminal ileum (where I have mine mainly) gets a chance to repair and recover and also the other meds a chance to work. Also means you get the nutrients you need and it helps you energy wise and so the knock on effect of mood and sleep improving along with pain improving too.

As I said just thinking out loud off the top of my head Ability but really hope something I have said here helps you... If you havent tried proper elemental drinks I would seriously give them a go. They are the first thing that helps me even though the first 4 days can be rough to start with. But hey if you feel c**p already whats the difference?

Thinking of you and truly hope you start to improve and see a light at the end of the tunnel you are in at the minute.

 

[theability]

pain is a huge issue, if you all only knew how much of an issue this whole pain management thing has become, the insanity of how these people listen so little.

 

[Otis]

Hi there,

I know where you're coming from! I am at the same place, back on Prednizone.

I've actually started thinking about this Elemental diet I heard about. Has anyone tried it??

 

[Guest]

hi Otis, and welcome to the forum.

i think there will be quite a few yes's - i'm sure many of our members have been on the elemental diet.

i haven't ever been on a set diet myself.. i just learned from experimenting as to what suited me and what didn't... and as a general rule avoid anything which is hard or impossible to digest.

looking forward to seeing you around, and i hope you find some useful info here

 

[soupdragon69]

Hey Otis,

I did the elemental drinks last year for almost 7mths in total. My GI told me that most folk are on it for 2-4wks and cannot tolerate much longer and that up to 80% of their patients go into remission at least in the short term. The team I am under also have a diet called LOFFLEX (google it) which they designed specifically for Crohns patients to use either on its own or in conjunction with return to eating post elemental use.

It involves no solid food at all. Some places will say you can drink decaf tea and coffee and things but my docs and dietitian said nothing but mineral water to drink hot or cold (It was also a recommendation of the manufacturers that make the drinks here in the UK - not sure where you are).

I found the first 4 days the hardest. Felt fantastic after that. But the dietitian couldnt meet my protein needs with the drinks and so I lost muscle mass and the lack of protein left me exhausted.

The dietitians told me after I stopped the drinks under medical say so (different gastro docs as I was in hospital at the time and my own GI was on hols) that you are supposed to stay on them and gradually decrease them as you eat more as time goes on. It can take up to a year they told me.

The conclusion I have come to now is that I need to use my elemental drinks during the day and eat a small meal in the evening so I meet my protein requirements. That seems to work well for me its just sticking to it!!

I find I feel much better in myself when on them and certainly seem to have alot of food intolerance issues (partly due to other health problems). If I can help in any way feel free to PM me ok?

Ability, how are you doing at the mo? Have been thinking about you.