Other Crohn's disease, anyone?

[Twisted and Distorted]

I'm just interested to know if there is anyone eles out there with Crohn's Disease as well?

I have a really tough time keeping a handle on things at the best of times with the PTSD but when I throw Crohn's into the mix as well with all the extra medication and constantly having to watch every that I eat I find that I'm sometimes losing my grip of control. That and the continues weight loss.

Does anyone have any useful tip or ideas?

I would be very greatful.

 

[Jestadud]

I have a couple of friends with Crohn's disease and can see no correlation with ptsd, but fully accept what an awful illness it is in it's own right. To have both is to have been dealt a really lousy hand.

From what I know I would have to say concentrate on the Crohn's first as that effects your physical wellbeing and you need your health to battle the ptsd.

 

[Twisted and Distorted]

It is what I am trying to do but the Doctors are using me as a piece of animal testing, basically they have put me on immune suppressors and steroids which in anyone without PTSD would play havoc with your mood swings.

In the back of my mind is saying there has to be a more natural way to do these things, but doctors being what they are will not help with that side of things. Just wonder if I am the only one out there battling with both?

Thank you for responding your very kind

T & D

 

[anni]

My daughter has Crohn's and an anxiety disorder. The prednisone and one other anti-immflamatory ( I'm sorry I forget its name- she takes it for the tendon swelling she gets sometimes with flares ) greatly affect the anxiety and hence her moods to the point where she'd far rather suffer the flare than continue the meds. I realize this is silly, since the flares have to be dealt with 'or else' but I can't blame her feeling this way with a really, really tough school scedule. OH- it's indomethecin- if that's spelled correctly, which I doubt. She only has to do prednisone for severe flares, in tapers, as well as before and after her Remicade infusions every 8 weeks so is never on it for long but it still really, really throws her into left field with her moods on top of the anxiety disorder. The indomethicin she needs if she's able to continue in sports and it's PRN but whew- she knows it's going to throw her into complete chaos emotionally and just has to be ready for that-hates this!

I don't know if these are the meds you're speaking of? I don't know if the PTSD dynamics interact differantly with the other things-she takes a good fistful of meds every day- has done since she was 8. I also don't know if there would be a correlation between Crohn's and PTSD, although it's an auto immune disorder so if one's system is thrown into complete chaos and its also possibly set-up for Crohn's, perhaps the stress would be enough to set the whole thing off? After that of course stress does set off those awful flares, don't they? Must be dreadful for you!

I don't know if this is helpful, but thought I'd answer just in case. Do take care.

Anni

 

[Adrienne12]

I can relate, Twisted. I do not have Crohn's but I do suffer from RA. Between shots of Enbrel and weekly doses of Rheumatrex....my body is a wreck. I REFUSE to take steroids. Although they help, my anxiety only gets worse with them. I can def. understand you not wanting to take them. I do know that there is a correlation between trauma and autoimmune disorders. I became obsessed with finding a reason for the RA. I know the trauma isn't the cause. However, there is a lot of research out there suggesting otherwise. Crohn's is considered an autoimmune disorder. It's something to think about. There are probably a lot more people suffering from Crohn's, RA, Lupus, and Fibromyalgia on this forum.

I have vomiting in the night that I think is from the meds but could be from the nightmares too. I have no idea. When you have PTSD and an overlapping autoimmune disorder....it gets confusing as to what is causing what. I doubt I helped you much at all. :( I just want you to know that you aren't alone.

 

[becvan]

I don't have Crohn's either but I suffer from IBS as do many others on here. I can not take the medication for it and have to attempt to control it by diet (haha.) I also suffer from continual weight loss. I have no ideas where Crohn's is concerned unfortunately but if you want to complain about it, I hear ya!

bec

 

[Cthulhu]

I have Crohn's disease, ist started about 6 years ago, but it hasn't been very active in the last years. OK, I have to watch very well what I'm eating but I'm used to and am taking no meds directly against it (but an antihistaminic drug against the food allergies I got after my first Crohn's- aggravation). I stopped taking azathioprine about 5 years ago and was VERY lucky that it worked out. I just did not have the money to buy it anymore.

I felt very good when on prednisolone, really awake and without the 'mist' that was around my mind all the time before. But well, the other side- effects were bad. Took azathioprine for a while, too, but like I said- had to stop.
At the moment the Crohn's is sleeping, I hope it will do so for a long time.

 

[KP the nut]

Not Crohns, but I do have ulcerative colitis, which is of course triggered by stress and anxiety - oh joy. Luckily if I occassionally use the hated 'crazy foam' (not its real name but I'm sure you get the idea) and contine to take 6 x asacol daily then it is controlable. Also add the pills for underactive thyroid and PTSD and I rattle when walking. Oh and H thinks I'll be stopped at customs as a drug smuggler:laugh:

 

[SarahM2106]

If you're looking for some things to try other than drugs, some people have some relief by controlling their diet and you can look for Crohn's friendly recipes at ADAPTCookbook.com and some people really swear by the Specific Carbohydrate Diet. Baron's recipes on ADAPT are great.

 

[islandog]

I have Crohn's. I think I have PTSD (or some other serious anxiety disorder). I am undiagnosed. I became "aware" during my bowel resection, 3 months ago. Crohn's is a walk in the park compared to how I feel now. This surgery awareness stuff was REALLY painful and traumatic. But not being believed, might be the worst part. Totally confusing.

 

[Adrienne12]

I believe you.

 

[Twisted and Distorted]

Islandog- I believe you...

KP- I had no idea, below is a tribute to our wonderful NHS.

Today I had a appointment with the GI, Keep in mind that so far I am taking Tramadol 50mg, zypan 30/500mg, Codeine Phosphate 30mg (which is also the 30mg in the Zypan) Pentasa 500mg, Amertriperline 125mg (not sure if I spelt that correctly) and the wonderful Prednisolone. Now you may think that I am walking around like a constipated zombie that rattle's however this couldnt be any further from the truth. I have been diagnosed with Crohns since I was 15 and since about this time last year I have been winning the toilet relays for the British team. (Go Me!) My diet is fantastic it's all been going on for far too long to be eating silly food that will only make it worse.
We've got to the point where none of the drugs I put in me stay long enough to do what they are supposed to do because the Crohn's like (KP above) has ulcerated and it chucks out a load of nasty stuff, thus resulting in vomiting blood and :poop: blood too, bruising like ive been in a car crash, low weight and constant pain. Im getting to the point I promise!
Today the wonderful Lord GI from the Night's of the GI's table saw that I have been seeing someone to do with CBT, that there were a couple of insidents when I was younger PTSD and said to me that he knows that I have had problems with mental health in the past, that he has no wish to know what went on or what the problem is but "perhaps" (he said loosely) "its all in your head!" and then looked at me with a side smile.

I wanted to swing for the B**tard! After I finished screaming in my head I said, "so let me get this straight... My head is making me bleed from the inside out? A colonoscopy say's I have Crohn's you did it yourself remember, but its my head thats making me prolaps though an eye of a needle? I vomit blood and bruise like a peach but it's all in my head? Tell me Dr what country did you get your medical training and why are you head of department? I got up went to leave the room and looked back as I got to the door, all I could see was Lord GI and the nuse sitting there stund and yes I had to go in for the final kill PTSD has made me intollerant and sharped tounged, " I think your going to be hearing from my solicitor dont you?" In the most belittling way I could.

Some of you may feel that I had been slightly to stronge however we have been in battle for many years now and today was the final straw. Quite frankly he was lucky I didnt chop his surgeon fingers off.

Sorry for any spelling mistake's I'm a math girl not an english one.