Advice needed please..

[megawatt]

Hi,

I wondered if anyone can help? My wife's got Crohn's colitis - dx 5 years ago, had been in remission for 4 years and was just using supplements and diet up until november last year. In november she had a flare - she was also 32 weeks pregnant at the time.
Anyway, the flare was uder control quite quickly, within 48 hours, but she started getting other problems - fluid on the lungs, they started her on diruetics, and high doses of clexane (they thought she had a clot on lungs but it wasn't), in the end they gave her an emergency caesaerrian as they were worried for the baby. During this she lost so much blood due to the clexane that she had heart failure. They resussed her but she was in ICU for a week, when she came out they thought she had an infection in the caesarrian wound so started chucking antibiotics at her. This then started a gut pain that has persisted to this day. The pain is not her typical Crohn's pain, it's just a persistent radiating pain - localised around the navel, and very tender to touch, it isn't effected by any food she eats, no nausea etc
She had a colonoscopy that showed mild to moderate inflammation throughout the colon - i saw the pictures, to be honest they didn't look that bad. They gave her infliximab but on the second loading dose she had a bad reaction to this so is now on a 40 mg taper of prednisone. The pain has'nt changed much the whole time. BM's are normal for her - 2-3 times day, no blood, mucus cramping etc. At christmas she was on 80 mg of morphine a day, she's now down to 20 mg. We've managed to talk the GI into prescribing her LDN but she can't start it whilst on the morphine - the pred she'll be able to get off in a few weeks so we're not worried about that it's just this pain.. the pred hasn't touched it - (i thought it would have reduced it), neither did the one shot of infliximab.
Could it be that the morphine is even causing the pain? She doesn't want to have another CT scan because they gave her one in ICU at christmas (before the pain was there) and she's had about 7 or 8 in the past 5 years. We're going to see her GI next week - Just wondered if anyone has got any ideas about how we could get to a point where she is off this morphine - she's G6PD so can't take many drugs, sulphur based, aspirin etc. We were considering acupuncture. Also, the pain that she's getting - has anyone else had anything like that and if so what was it? Could it even be something hanging over from the C section or maybe some nerve damage..
any suggestions would be appreciated..

 

[mRae85]

I take 40 mgs of pred and 2000 mgs of sulfaslazine a day and to be honest, I am still in alot of pain, pain is my main issue. It is very sensitive all over my stomach area to the touch also. I am far from an expert, I have only been diagnosed for a little over a year but I will say that my bets are on the Crohns but I do think you make a very good point about maybe something from the birth, not really "hanging over" but possible during contractions she tore something or pulled something or nerve damage. i suggest also getting an ultra sound, the navel area is a very sensitive area and is where the child is fed and in other words attached to a woman while she is pregnant. A CT Scan and the ultra sound tho would be 2 test's I wouldn't take no for an answer on getting, seeing as the colonoscopy only showed inflamation and not any serious ulcers or so on I dont see how the pain could be that severe.... dont get me wrong any and all inflamation hurts, but also keep in mind that inflamation is not ONLY caused by Crohns... take a scratch on your hand for example, it will be red and inflamed in the surounding areas even tho those areas are not actually wounded (hope that made since) A colonoscopy wouldn't be traveling through the birthing section of a woman but if she is injured in that area then it would possibly inflame and irritate the colon and intestinal tract. I had a Dr tell me a few months back that just like when I have my period the inflammation from my ovaries would "clash" with the inflammation in my bowels due to the fact they all kindda "squished" together in the gut area. ... aight I hope all that made since.... i sure gave it a good shot i guess.

 

[My Butt Hurts]

Well - I don't have any advice, megawatt - but I just wanted to say I'm sorry for all that you both are going through. Try to hang tough for her - she really needs you right now of course. And a relationship can be hard with a new baby especially, so stay strong. Congrats on the new baby by the way - how is he/she doing?

The one symptom I rarely have is pain - so the only thing I can think of is maybe a drastic diet change?

 

[Cog]

Sorry to hear that your wife is having such a rough time. I too would look at diet. Keep a food diary and note any foods that she eats daily and remove them form her diet. Often the quickest way to identify the foods causing problems is to pick the ones she likes most. Be wary of cows milk and wheat. For me I cannot eat bananas (they make my gut cramp), wheat, chicken, potatoes, mussels.

Good luck

Cog

 

[Guest]

heck, your wife has been through so much! so sorry to hear that, Megawatt.

i was also thinking, while reading your post, about the C Section maybe being the culprit more than her Crohns, particularly if BMs are normal etc.. has she had an ultrasound scan on her belly since the birth? & does she have a raised temperature at all?

i can't really offer advice re the pain management.. if she can't take a lot of the usual painkillers, then i guess the morphine is a reliable & effective choice for her. but yeah, i know we can't take opiates while taking LDN so it's a stalemate situation

however.. i have had 6 abdo surgeries.. and i know the residual pain that can last from the procedures for many months after. they told me that nerves are the last thing to heal... take a long long time to knit together and feel normal after being cut. i had post-surgical pain for up to 2 years after one op, but i have to say it wasn't quite bad enough to need morphine. or maybe there is still an infection there, somewhere.

 

[mRae85]

I haven't had any abdo surgeries but one thing I forgot to mention is that after my knee surgery (they had to re-build the entire thing) I had alot of nerve damage, it has been almost 7 years ago and it still feels funny to the touch. to be more exact... where the scar is at, about an inch out on the right side of it is funny to the touch. For almost a year after the surgery, it actually hurt to the touch and I didn't even want to shave because it just felt like i was shaving the skin off my leg. I still really recomend gettin another ultra sound and CT scan to be safe tho.

 

[megawatt]

Just wanted to say thanks for your replies - sorry it's taken so long get back to you..
My wife's condition is still pretty much the same although now she's just managed to go down from 30mg to 20 mg a day morphine so some progress. We're still waiting to see the GI's and pain team so we're pretty stuck until we see them. When she came out of hospital at Christmas she actually went on the SCD for about 6 weeks - we did it together but she didn't see any difference so she came off it - she's still pretty strict with what she eats but it's not the SCD. Like I said - the pain does not seem to relate to any BM's or anything that she eats - it's just a persistent radiating pain, no fevers or anything - she did have an ultrasound early january but that didn't pick anything up. She's going to try acupuncture to see if that brings any relief - i'll let you know how it goes, but I think it's likely she'll need a CT scan
The one blessing through all this has been our new baby son - he's absolutely beautiful and is thriving - he's smiling away and giggling now, you wouldn't think he was 8 weeks premature - so we're greatful for his life.
Thanks again - good luck to you all