Hi alt

Just been reading up on rice allergies. Turns out its rarer but perfectly possible to have a sensitivity to rice. This page has baby pictures on lol, but it's a mum whose son is allergic to a few things, and the lists are helpful and definitely not aimed at kids!

http://multiplefoodallergyhelp.com/?page_id=439

Take care today and hang in there. You'll find a way through...

Bram.

Well I'm reading these posts and now I'm wondering. I was about to go onto one of the other sites and ask if they thought my taking of increased OxyContin as demanded by my PM and NS last week could cause me gallbladder problems.

Then I read these and I started thinking.

I had polycystic ovarian disease syndrome and after 11 emergency ops throughout the 80's yet another cyst imploded this time directly into the ovary and blew my right ovary to smithereens, they had no choice but to remove it doing a partial oopherectomy, taking the right Fallopian tube as well in 1989. The remaining ovary developed another cyst in 1993 and damaged the remaining Fallopian tube so they had to remove the left Fallopian tube leaving the left ovary intact.

I developed a tumour in 2001 and required a total hysterectomy removing the remaining ovary, uterus and cervix. I nearly died on the operating table the first time she operated, she botched the surgery and nicked the bowel, but didn't own up to it. Subsequently I developed an infected hematoma followed by peritonitis, regular temps of over 103 extremely ill, rushed in and out of hospital and even her anaesthetist came to me on the ward and said get out of here as soon as you can. Then I developed MRSA, I haemorrhaged twice and the ultimate kicker a fistula between the bowel and the vagina cavity with faecal matter oozing from there. That gave me third degree burns from the faecal acid, I finally had to have 12 inches of my bowel removed.

Blow me the ovarian tissue grew back again the following year and I had another gynea go in and attempt to remove it a 2nd time in 2002 and by 2003 I developed a mass that blocked the right kidney, so they put in a stent in the kidney tract until they could remove the mass. That year I required further surgery to remove it. After that he put in a zoladex implant and nuked any possible tissue. End result, I now have a dodgy bowel and since 2005 have suffered 8 extremely dangerous bowel obstructions. The specialist has said if I have any more intestinal injury that requires surgery I run the risk of losing my bowel completely, it shutting down and face high probability of death. I work hard to manage my bowel obstructions taking movicol sachets daily.

In 2012 I had a grand mal seizure attributed to acute headache pain, and during the seizure fractured 3 thoracic vertebrae, 2 ribs and had an s1 stress fracture.

So now I'm here in 2014, I've got failed back surgery syndrome, from a double spinal fusion in 2013 to L4/5 and S1 and suffering extreme and constant chronic pain in my lumbar, thoracic and cervical so after Rhyzotomy difficulties that caused the seizure in 2012 we opted to have had a SCS implant put in December 2013. Once again they again had trouble and could get only one lead in so it's not working and now I'm waiting for a paddle or yet another spinal fusion to L2/3. For sure they intend to do another nerve block next week.

But my big question, is do you think I've got CRPS, the Rhyzotomy to the thoracic region in 2012 left me unable to wear clothes on my back for months as the burning pain was excruciating, my pain seems to be spreading and I think I'm at the end of my tether. I told my husband the other day I had this strange pain to just below my right rib cage and it's getting worse, I told him today and I fear we are in for another round of hospital merry go round. I wrote my PM this morning telling him the nerve block he did on two weeks ago gave me relief to my left hip for 5 days but the pain has returned. I want them to either fuse the L2/3'or put the damn boston paddle in and remove the once lead as it's not working but when I had the SCS trial I'm sure I had relief.

At this stage I think I'm cracking up and I'm losing my identity, my life revolves around pain, I'm a prisoner in my own home and I'm over it. I've been doing 30 to 45 min walking exercise 4 times this week, first time in ages but it's caused me to set back. I can't test if the one leads working if I don't do anything can I.

Anyhow, now I have this gallbladder pain or maybe it's liver. I'm just so frustrated I'm going from bad to worse by the week. The left hip pain has returned and the right hip pain, thoracic pain, cervical pain and left arm/ hand pain has remained unchanged. The increased meds helped but I fear another bowel obstruction is around the corner.

Any suggestions?

Crumbs. What a hellish journey you've been through PamelaJune. I'm so sorry.

Firstly, it sounds as though you have a case against your first surgeon who messed up your op and nicked your bowel, etc. that seems to have set so much else off...it's appalling how much damage she did. I'm not one for advocating the legal damages process, but for something that devastating and just atrocious in terms of poor surgical skills, I'd explore it if you haven't already. Sounds like you need all the help you can, and sadly money is everything with medical treatment.

I'd get another opinion on your pain for sure - a neurologist or pain specialist who has experience of CRPS and can give you more of an idea. In the meantime I would note down any symptoms and photograph any visible things that you think might indicate CRPS (rashes, colour changes, blotchiness, hair/nail differences). Doctors like any evidence you can help them with in making or excluding a diagnosis.

The new pain in your liver/gallbladder region certainly needs investigating, but make sure you feel very confident in the specialist before you let anyone cut into your poor body again, and if possible get a second opinion on whatever they suggest. I hope it is something that can be sorted out without too much more stress for you.

Just keep fighting to get some treatment that makes your life a bit better. You deserve better than what's happened, and hopefully you'll get some answers and be able to find treatment that gives you some peace from the pain.

Take good care of yourself, and let us know how you get on.

Bram.

Alt,

I just wanted to let you know that I do have CRPS in my gallbladder region after my gallbladder was removed. I couldn't eat for 5 years. Every time I did, I was in sever pain. The only thing I could tolerate was broth, noodles, potatoes & toast. That was my diet for those 5 years. It took me going to Mayo Clinic to find out what was wrong. They put me on Lyrica & Cymbalta. It helped me enough that I can eat normal foods. I had CRPS internally first then developed it after my ankle surgery, so I was kind of backwards.......My family always said I wasn't normal!

I will answer any questions you might have if I can about my experience. Just ask!

Melissa

Melissa could you just eat certain things or that is just what you wanted?. They dx me with ibs, hiatal hernia and rsd. I don't meet criteria for ibs. But the gi doc and pcp both have said it. I say upper stomach. Ins def. says lower. It says bowel problems I don't usually have problems.
I just know that I have found I can't eat certain foods.

I could only tolerate those foods. Anything that I ate caused me pain & those foods were the foods that cause me the least amount of pain. Anything high in fat content I stayed away from as that caused me the most amount of pain & the pain would last for days. I now know that it is CRPS & the meds they put me on helped it.

What types of food can't you eat?

Rice in any form is a major player ( I use to eat rice all the time and love it) I found out today creamer (so I guess that means dairy) , nuts, cucumbers, deer jerky,. All this is still fairly new to me. I guess I didn't want to admit there was a problem or that certain foods actually could cause the problem. So I'm really paying attention now.
Can u tell me how did you ever sustain urself on such little food? U must have been skinny as a tooth pick.

Sorry you are dealing with soo much pain in your stomache,I have rsd full body internally mostly ,from a two story fall at work,shattered my heel,broke my back and compound fracture of my wrist,now that it spread to my organs ,my stomache is the most severe.i deal with stabbing burning bloating crippling pain in my stomache,there is a drug called remeron that a dr let me try a few years ago,it changed my life,I had 3 surgerys in my stomache befor this,gull bladder removed, gull stones,exc.couldnt find what was causing the pain.tried every medicine from nexium to u name it.as soon as I tried remeron I wasn't bed riddin anymore from my stomache issues,it takes the pain away it allows me to eat,granted I still have problems, but the relief the remeron can give you is a small miracle,it's a drug for depression and anxiety,but it has something in it for the stomache.befor if I ate i would feel horrible ,this allows you to eat,it gives you a big appetite actually,I couldn't eat anything befor remeron,it also makes u sleep.if I miss a day if taking remeron I'm bed riddin,cold sweats,.hopefully you try this,I really think it will help you,hope you feel better danboy

It was extremely hard!! I took small bites of different foods here & there. I had to because I just needed to taste something other than broth. My family told me that I looked anorexic. I was overweight when this started & I lost half of me by the time it was said & done. People wanted to go on my "diet". I don't suggest it.....it's not exciting food at all!

Also, check out Sphincter of Oddi Dysfunction (SOD). That is something else I had on top of the CRPS. It is where your Sphincter of Oddi closes off & the bile that digests your food backs up & causes pain, just like a gall bladder attack. I will explain....so, what happens when you eat or you get ready to eat, your body starts to produce bile which helps break down your food. Well, the Sphincter of Oddi closes off & wont let any bile go through so, you are getting backed up with bile & it causes pain. The higher in fat content the more bile you produce because it takes a lot to break down, that is why I had to stay away from anything real high in fat content.

My CRPS started in that area after they went in to cut the Sphincter of Oddi open to let the bile through. So one condition led me to another condition, oh how fun this is......NOT!

If you haven't already, start keeping a food journal to write down what you eat & how it makes you feel. See if there is anything correlating. Also, have your bathroom habits changed? You mentioned IBS, so that is why I am asking. Where is your pain when you eat?

Danboy
I'm sorry for the pain that you must have been in and may still go through. But I'm grateful to have u here on neurotalk with me.
It sounds like u went through a major ordeal.
I am eating around 800-1100 calories on okay days. But I did take a bentyl which is a muscle relaxer for ur small intestine and I'm doing better today. However I'm scared to eat. I'm hungry. But scared of the pain.

I will definetely keep remeron in mind though. Thanks