Not signed in (Sign In)



Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

Welcome Guest!
Want to take part in these discussions? If you have an account, sign in now.
If you don't have an account, apply for one now.
    • CommentAuthorJtoz54
    • CommentTimeJun 24th 2014
     
    Hi Its been quite a while since I've been on. I finally made an appointment to have my hemorroids removed after 25 years of pain. Before they do that though my Dr.said that I have to have a colonoscopy. I am dreading that. The last time I had one I threw up and had a headache all day from the little bit of anaesthesia. But for the actual operation I told my Dr. I couldnt have salicylates or metabisulfite. He said I should have an epidural then. I know theres a narcotic and maybe lidacaine in that. So what do you think. Will I end up throwing up, will I get a migraine or could I die ????????
    I'm so chemical intolerant. Are there any other options ? Help
    • CommentAuthorkajon
    • CommentTimeJun 24th 2014
     
    Jtoz54 - I can only speak about my personal experiences, but first I must say that many (most) doctors do not understand chemical intolerances. Younger anesthesiologists or younger pharmacists seem to have the best working knowledge in this area.

    I have been tested at the Mayo Clinic and it has been found that my body is very slow to metabolize many of the CYP450 drugs (especially CYP2D6 which includes the Fentanyl used in colonoscopies and also surgery drugs such as Lidocaine, Propranolol, Morphine and Hydrocodones, etc.) I am not allergic to these drugs, but rather need a much smaller dose or my body sees them as toxic because it cannot properly clear them out of my system and they get held up in my liver. I have been told to start these drugs at 1/4 dose and build up from there. This is hard to gauge as I am also slow to react to the drug. Something to consider........

    For your surgeries, insist that they only give you drugs in single dose vials as there is a stronger chance these will be without preservatives/sulfites. Insist on meeting with them ahead of time and insist that the doctor or you discusses this with an anesthesiologist before the procedure.
    • CommentAuthorTeefee61
    • CommentTimeJun 25th 2014
     
    I understand your fear Jtoz54. When I had my appendix out, I was already sal sensitive and I had previously had major reactions to aspirin. Yet I woke up from the anaesthetic with a major angioedema from the Brufen they'd given me. My GP husband was crying (and he NEVER cries) because I think they thought they'd killed me. I also felt very sick because of the anesthetic, which is apparently normal. So when I had to have a C section surgery for my second (breach) baby, I cried for weeks in panic. Like you, I was terrified of dying.

    The anesthetist was very understanding, and gave me a light version of the anesthetic. I woke up really quickly at the end of the op, but so happy to be alive. I didn't have any type of reaction. I only took paracetamol for the pain.

    So I guess the best thing is to speak to the anesthetist to put your mind at rest. I hope you come back here and tell us how it went.

    Love, Teefee
    • CommentAuthorlindyd
    • CommentTimeJun 25th 2014
     
    The anaesthetist is the best person to talk to Joan about your concerns. I don't know what they are like in the US but over here in the UK they are very good and are keen to talk to patients about their concerns/issues.Can you ask for a meeting?
    After all it reflects badly on them if they kill you!!
    The good news is that in the 6 years I have been hanging around these forums I haven't yet heard anyone say that they know of someone dying from an anaesthetic due to their chemical sensitivity..quite the opposite - people have reported that they have been fine..
    I had epidurals for both of my babies many years ago (before I was majorly reactive) and I would say that as the anaesthetic is injected into your spine rather than knocking you out it would be the safest form and given a choice that's the one I would go for!!
    • CommentAuthorJtoz54
    • CommentTimeJun 25th 2014
     
    THank you all for your encouragement. I will definitely speak to the anaesthetist. And I will come back here and tell you all how it goes. The colonoscopy is July 23 and the Hemorroidectomy is July 28.
    • CommentAuthorKiwi
    • CommentTimeJun 27th 2014
     
    I haven't been in here for a while either but best wishes to you, Joan. I understand your concerns because I have delayed and/or simply not bothered about things I should have done, due to my concerns about drug reactions. In my case I not only have SS but histamine intolerance also and nobody here in NZ (much) seems to understand them although at one stage I did manage to talk to anaesthetist over the phone. He assured me that there were always alternative anaesthetics they could use and to be sure to discuss my concerns at the time. I am still resisting doing anything though! Now have a hiatus hernia to add to the mix. I should get scoped to see what's going on but am too scared to have lidocaine sprayed down my throat in case it closes up on me! Yikes! Oh to be normal.
    • CommentAuthorJtoz54
    • CommentTimeJul 2nd 2014
     
    Oh to be normal ! Wonder what thats like ? haha
    I dont know if I'm allergic to lidacaine but I did have a bad reaction to a hemorrhoid cream one time with lidacaine in it.
    I had a hernia surgery years ago (in groin area) with local anaesthesia and it went well.

    Here is the letter I just mailed to the Director of Anaesthesia:

    Hi, on July 28, 2014 I am having a Hemorroidectomy with Dr.xxxxxxx at Morristown Memorial Hospital.
    The last time I had same day surgery with general anaesthesia at Morristown Memorial Hospital was in 1989.I had to be admitted overnight because I couldn’t wake up fully and I couldn’t stop vomiting until 9:00 pm, no matter how many shots of anti-nausea medication they gave me.
    Prior to that, on July 23rd, I am having a Colonoscopy with Dr.xxxxxxxx at Morristown Memorial Hospital.
    After my last Colonoscopy 7 years ago I threw up afterwards and had a headache all day.
    I am allergic to many drugs, foods, food chemicals and additives and I am Multiple Chemical Sensitive. I am hoping you can come up with the safest general anaesthesia or epidural for my surgery.
    I am allergic to: Aspirin, all NSAIDS, all Salicylates, Penicillin, Amoxycillin, Levaquin, Cephalexin,
    Codeine, Preservatives like Sodium Metabisulfite and Sodium Benzoate, Artificial
    Colors, Quinine and Analpram . ( I don’t know if it was the lidocaine or the other
    Ingredients)

    I have included a list of other names that salicylates go by and a book about my Salicylate Intolerance to give you an idea just how sensitive I am.
    The only drugs that I have taken that I have done well on were Allegra-D and Zithromyacin.
    My symptoms range from swollen throat, stuffy nose and swollen inside of ears to rash, migraine, dizziness, chills, vomiting, arthritis and asthma. Thank you for your help. I will be waiting for your response. Sincerely,
    • CommentAuthorJtoz54
    • CommentTimeJul 18th 2014
     
    I was very pleased that the Director of Anaesthesiology got back to me. He said he got my letter and book and found it very interesting. He said that in the past when I had my colonoscopy 10 years ago, anaesthesiologists werent involved. Now there will be one and they will be using a light dose of Propofil. He said there werent any salicylates or preservatives in it.

    He also said for my Hemorroidectomy the following week I will be given a Spinal with no preservatives. He said 2% of the people get a headache. Why do I already know that I will be one of those 2%.

    The Prep for the colonoscopy was another problem. After I bought the Magnesium Citrate I saw that it had lemon oil in it. While we can have a squeeze of lemon juice I'm sure we cant have lemon oil. So I called the Dr and he said I can use Miralax instead. But it has to be in combination with Dulcolax. I asked him if I could use the white Milk of Magnesium caplets and he said no. So I'm stuck taking Dulcolax with red dye 30 and yellow dye 10 or 11? I'm hoping its such a small amount it wont make me sick.

    Ten years ago, when I threw up after the colonoscopy, they had given me Phospho Soda. My Dr.said that it was taken off the market cause it was too hard on the kidneys. But how many people back then took it and got sick. And how many more drugs will be taken off the market AFTER many people are injured ?

    Well wish me luck. I'll tell you how it goes. Joan
    • CommentAuthorJtoz54
    • CommentTimeJul 23rd 2014 edited
     
    Well one down one to go. I had the Colonoscopy today. The Anaesthesiologist was great. He said it was very smart of me to contact the Head of Anaesthesiology who had already spoken to him.( He also said he wants to get my book.) He was prepared with preservative-free Propofol and a small vial of PF lidacaine. I remember feeling drowsy then waking up in recovery completely awake, alert, feeling good, no nausea or dizziness. I could see clearly. So different from years ago when they had narcotics in everything. I used to throw up and everything looked like I was looking through a kaleidoscope for hours.

    I also did ok with the prep yesterday with Dulcolax and Miralax. All that worrying for nothing. Thank God

    Now Monday is another story. And I hope I have another good story to tell you. I will be getting a spinal (no preservatives are ever in spinals) and a little propofol to take the edge off before the Hemorroidectomy.

    Without sounding like I'm promoting my book, it's so much better to give a doctor a simple book explaining SS instead of copies off the internet. Its not real scientific but its a good simple explanation for doctors who dont want to take too much time to read. I'm sure they only read the Introduction but theres a lot of info in the first few pages. See it at Sickfromsalicylates.com

    That said, I'll let you know how it goes Monday. Joan
    • CommentAuthorDavid
    • CommentTimeJul 23rd 2014
     
    Great news!!
    • CommentAuthorAvatar
    • CommentTimeJul 26th 2014 edited
     
    Thanks for sharing this! Your letter to the head of anesthesiology was a great idea. I hope things continue to go as smoothly as possible. Best of luck!

    ETA: Is this in NJ? I used to live near Morristown.
    • CommentAuthorJtoz54
    • CommentTimeJul 26th 2014
     
    Hi yes we are in Parsippany NJ
    • CommentAuthorAvatar
    • CommentTimeJul 27th 2014
     
    I used to love the Chand Palace. Still hoping I'll get over all this and be able to eat there again some day.
    • CommentAuthorJtoz54
    • CommentTimeJul 28th 2014
     
    I hate to say it but since curry is so extremely high in sals it might be a very long time before you are able to eat there.

    Heading over to the hospital soon for my hemorrhoidectomy where I will be given a little bit of Propofol (which I did good on last week) and then a spinal. uugh. I'll let you know how everything goes.Joan
    • CommentAuthorJtoz54
    • CommentTimeJul 29th 2014
     
    Had Hemorroidectomy yesterday at 12:30.They gave me Propofol again (love it) and I dont even remember the Spinal shot. Operation took 1 hour and getting feeling back in legs took 3 hours. No headache though.
    Didnt sleep all night. I'm in the worst pain of my life. taking tylenol. Tried a half of a percocet (oxycodone) but it made me so dizzy. the nurse said you dont heal as well if youre in pain but what else can we take ?
    • CommentAuthorJtoz54
    • CommentTimeJul 30th 2014
     
    Still in terrible pain. Living in a sitz bath. The operation traumatizes the sphincter and the whole pelvic flloor aches with tremendous pain. Hopefully each day will be a little better. Just taking tylenol and laying down a lot.
    • CommentAuthorJtoz54
    • CommentTimeAug 1st 2014
     
    Guess what ? I called my Dr. today and said the pain is unbearaable and it looks and feels like a thrombosed hemorrhoid down there. Of course I thought he would tell me that that was impossible but instead he said its possible. What ? I thought I just had my hems removed. He said he removed 2 internal and 2 external but left 1 external. He said he removed the feeder vein that supplied blood to that one so it shouldnt have filled up with blood clots but its possible. So now I have to go to his office today to have this slit open and the clots removed. I went through this whole procedure so I would never have to go through that again. He keeps telling me that I have to take the oxycodone because no one can endure the pain with just tylenol. He's right but I hate feeling dizzy so much that I wont take it. We who are allergic to aspirin and all NSAIDS are truly cursed. The past 4 days have been a nightmare of unbearable pain. Lots of screaming and crying but its got to get better soon.
    • CommentAuthorRita
    • CommentTimeAug 1st 2014
     
    My sympathies go out to you Joan. Maybe try just a small portion of the oxycodone......just to take the edge off. Will say a prayer for you.
    • CommentAuthorJtoz54
    • CommentTimeAug 4th 2014
     
    Thank you Rita, I need all the prayers I can get. A light bulb went on today after one of my crying screaming episodes. I have another fissure like I had 2 years ago. It is the most intense burning pain when you go to the bathroom but subsides in about 10 min. The longest 10 min of your life.Cant really do anything for it except stool softeners and sitz baths and pray.
    • CommentAuthorJtoz54
    • CommentTimeAug 11th 2014
     
    HI, 11 days after surgery I went to the Dr. I was still in too much pain to sit. I told the Dr that years ago my dog had a severe allergic reaction to cat gut sutures. He swelled up and was in lots of pain. We had to bring him to the vet at 2 in the morning to have the sutures out. My girlfriends husband had knee surgery and 10 years after the surgery some of the absorbable sutures that didnt absorb got infected and he needed surgery to remove them..
    So I asked my Dr. to please remove the absorbable sutures from the outside incisions. He did and that night the pain and swelling started going down and it was the first time I could sit in 11 days. Now all my pain is the sutured incision in the rectum. I dont know how they would remove them but I feel that I would heal faster and alleviate the burning pain if they could remove them. I'll let you know how it goes.
    • CommentAuthorKiwi
    • CommentTimeAug 27th 2014 edited
     
    Joan...I haven't been here in a while (long story) but I do hope you are feeling much better now. :) Also, I came into the forum to ask about SS and having biopsies. I was worried about bleeding, but it sounds like you didn't have any major bleeding problems, Joan.

    Hugs
    • CommentAuthorJtoz54
    • CommentTimeSep 25th 2014
     
    Ok so I've been to hell and back. I really couldnt sit without a lot of pain for 4 weeks. In the 5th week I asked the surgeon to please remove whatever absorbable sutures were still there that he could possibly remove. As some long strings were sticking out he did remove them. I dont believe in coincidence. Once they were removed the healing accelerated and by the 6th week I went back to work feeling human again. There is still some discomfort but nothing like the 1st month.
    Kiwi, I think all ss people are prone to bleeding. Not so much from cuts but I am still prone to nosebleeds and had the heaviest periods when I was younger. Recently I was having nosebleeds and then I realized that I was eating a lot of cabbage that week. Cabbage is a big time blood thinner. People on blood thinner meds are cautioned to avoid cabbage. So I stopped cabbage for awhile and started taking some vit.K which helps clotting. The nosebleeds stopped the next day.
    • CommentAuthorJtoz54
    • CommentTimeSep 25th 2014
     
    Ok so I've been to hell and back. I really couldnt sit without a lot of pain for 4 weeks. In the 5th week I asked the surgeon to please remove whatever absorbable sutures were still there that he could possibly remove. As some long strings were sticking out he did remove them. I dont believe in coincidence. Once they were removed the healing accelerated and by the 6th week I went back to work feeling human again. There is still some discomfort but nothing like the 1st month.
    Kiwi, I think all ss people are prone to bleeding. Not so much from cuts but I am still prone to nosebleeds and had the heaviest periods when I was younger. Recently I was having nosebleeds and then I realized that I was eating a lot of cabbage that week. Cabbage is a big time blood thinner. People on blood thinner meds are cautioned to avoid cabbage. So I stopped cabbage for awhile and started taking some vit.K which helps clotting. The nosebleeds stopped the next day.
    • CommentAuthorKiwi
    • CommentTimeOct 6th 2014
     
    Hi Joan! So pleased to see you back 'on the boards'! I'm also glad to know that your recovery is proceeding relatively smoothly. And thanks for the info about cabbage. I've been considering cabbage juice to heal an esophageal ulcer which has really thrown a spanner in the works. Sigh.

    Take care!

    Hugs
    Kiwi
    • CommentAuthorElisheba
    • CommentTimeJan 26th 2017
     
    I had a colonoscopy in 2016 and I loved the prep. The day before I took my pills and then sometime in the afternoon I drank half my prep and started doing a water fast. All of my nasty hives (white 3D hard welts that are under and on top of the skin) disappeared and besides running to the bathroom I felt great. Also no facial swelling. I was on 6 different antihistamines (claritin, allegra benedril, singular, zyzal/ zyrtex) all at once and I skipped both my night time pills and the next mornings pills. All of these pills will give you horrible rebound hives when you taper off or stop but I had no hives the day I did my colonoscopy. I told my husband I wished I could live on water.
    Th Colonoscopy Prep Liquid I drank in 2 doses, cold, was Gavilyte G. It was clear and had no color and tasted nasty.

    GaviLyte G Description
    GaviLyte – G is a white powder in a 4 liter jug for reconstitution, containing 236 g polyethylene glycol 3350, 22.74 g sodium sulfate (anhydrous), 6.74 g sodium bicarbonate, 5.86 g sodium chloride and 2.97 g potassium chloride. When dissolved in water to a volume of 4 liters, GaviLyte – G (PEG-3350 (236 g) and Electrolytes for Oral Solution, USP) is an isosmotic solution, for oral administration, having a mildly salty taste. GaviLyte – G is administered orally or via nasogastric tube as a gastrointestinal lavage.

    Now I know polyethylene glycol (basically anti-freeze) is nasty and very toxic. However the one dose was a positive experience so this is what I will request in 5-10 years when I do it again.

    In an Emergency when my face is swelling I have tried:
    Mix dry
    2 parts sodium bicarbonate (baking soda?)
    1 part potasium bicarbonate

    Of this mixture 1/2 teaspoon dissolved in warm water can do second dose 20-30 minutes later but then have to wait 24 hrs.
    Allisonvickery.com.au
    When I tried this cure I got horrible stomach pain and my face stopped swelling but I was not sure if it would just have stopped swelling on its own. So this emergency remedy didn't hurt and I will keep it handy but I don't know that it helps. Maybe if I had drank it with a huge amount of water I would have had better results.
    • CommentAuthorElisheba
    • CommentTimeJan 26th 2017 edited
     
    This happened long ago now but in the future to help heal fissures try clay powder bentonite. When my child was an infant, one time her diaper rash was so bad that wiping involved blood even when we were using damp paper towels or cloth washcloths. My doctor said she had a yeast infection or something and wanted me to use a steroid cream. A mom at Whole Foods told me not to do that and recommended clay powder bentonite. The clay used to be sold in the bulk section. I spent 81 cents and the teaspoon of powder lasted several months. Her diaper rash wentbaway and healed over the course of 3-5 days.
    Clay powder bentonite smothers bad germs and can safely be put on wounds. It will help dry your but and heal your cut. I used white clay, if you get green clay then when you wipe you will see green. Good luck.