Hello,
Short version - wondering if anyone with SCLS has had issues with colonoscopy prep or procedures? First time I had issues, after SCLS diagnosis, I was not on IVIG and the prep/procedure triggered an episode of SCLS (it appears). I then began IVIG and had no issues with my 2nd colonoscopy. My third colonoscopy, I had reactions from the prep - chills and unbearable lower back pain. I was concerned my kidneys were having issues. I did not drink the rest of the prep, did not do the colonoscopy and went to doctor instead. Felt terrible but all tests showed kidney function was ok
Anyone else have issues of any kind with the colonoscopy or colonoscopy prep? I am trying to determine what options I should try as I do have potential colon cancer in family and have had polyps. I am going next to Dr Lyons or Dr. Pecker - ( Arturo do you recommend Dr. Pecker over Dr. Lyons as I am on the East Coast - I do not plan to travel to NYC but could if had to....) Also, I do not want to discourage anyone doing a colonoscopy. I feel it is an important procedure and have history in my family and plan to try again...thus the question to the group.
Thx
Marc
Longer version and background if interested:
I wanted to ask if anyone else has had complications with their SCLS due to colonoscopy procedures? I have had two separate issues that acted differently but both were Colonoscopy prep related (it seems). I was diagnosed by Dr. Greipp in 2010 after a major episode(43 year old male living in North Carolina, U.S.) where I spent 5 days in ICU and a week in hospital. My first episode I had run 2 times in severe heat and may have gotten dehydrated or contract flu symptoms prior to the episode. Docs did not expect me to make it out due to blood thickness and fluid retention (40 plus lbs added on a 170 lb body weight). I was lucky and self corrected and did not lose any limbs, or have any permanet nerve/physical damage to my body. I did the NIH study with Dr. Druey in June of 2011 (recieved a personal visit from Arturo!) and recommended the terbutaline/theophyline regimen as I was having smaller episodes occasionally but was self correcting after rest and drinking fluids. I am currently on high dose IVIG every 4 weeks and have had no symptoms. Now will start my question on colonoscopy related concerns:
1. Approximately a year after my first episode I had a routine colonoscopy. Everything was good (benign polyps removed) until 2-3 days later when my blood pressure dropped. I landed in ER/ICU. Instead of major amounts of saline, the doctors were more judicious plus went with Albumin and then started me on IVIG. I corrected pretty quickly and my outcome was much better. Out of the hospital in 3-4 days without being in critical/life threatening situation. I have been on IVIG ever since. (14 years) It seemed that the movement of fluids / dehydration may have triggered the episode. I have no issues with SCLS episodes at all since being on IVIG. I am very grateful to the doctors and Arturo for advocating for me.
2. In 2017 I had a colonoscopy again and had no SCLS symptoms or issues. Routine
3. Last month I started the colonoscopy prep (GoLytely) and the evening I was having chills and by early morning the chills increased and lower back pain became almost unbearable. I was concerned with my kidney health. Kidneys are performing well per the tests. I stopped the prep and did not do the colonoscopy. Felt terrible but did recover. Now trying to find other options.
I am wondering if anyone else had colonoscopy prep issues and have had doctors make recommendations accordingly?
Thanks
Marc
Hi Marc. I have been treated with IVIG for 14 years now with no issues. I had a colonoscopy about 12 months ago with no issues. I used Picoprep. Hope this helps.
Hello
I have received IVIG every month for the past 8 yrs and have had multiple colonoscopies with no issue.
I have been receiving IVIG infusions for the past 12 years. During that time, I have had colonoscopy's with anesthesia without any complications.
My husband has been getting IVIG for 6 1/2 years, has had several colonoscopies with no issues.
Marc, so sorry to hear about your bad experience with the latest colonoscopy prep, but until now I've never heard of, or personally experienced, any SCLS-related complications from a colonoscopy or any other medical procedure, for that matter.
You should consult with a medical professional, of course, but if I were you, and I had your medical and family history, I would not hesitate to undergo the prep for, and a colonoscopy, every few years, as recommended.
After all, at the time you had an episode of SCLS years ago in potential connection with a colonoscopy, you were not receiving IVIG. And the prep-related discomfort you recently experienced might be better explained by something else. For extra protection, schedule the procedure for a few days after getting your IVIG.
As concerns a medical consult, what I recommend is that you ask your gastroenterologist to contact Dr. Mark Pecker, because they can speak on the phone or exchange emails and settle the matter in a few minutes. Alternatively, you could try to schedule an appointment to see Dr. Pecker in New York City -- in which case make sure to say that you are an SCLS patient and I referred you to him, because he's not taking new patients -- but that will take time, and since you would be coming from afar, it would involve an extra expense.
Arturo and others,
Thanks so much for your responses. Glad to hear that colonoscopies and the prep isn't a consistent issue for people in our group. I will move ahead with doctor's recommendation. I did reach out to Dr. Pecker via email and he tried to call me back but I missed the call. I will be following up with him immediately and move forward from there.
I do feel like my immune system/physical response is on the weaker side - when it comes to food borne illness or responses to some allergens, I will eat the same food or do the same activities as others and my response is inevitably more dire than the people I am with. Thank goodness I have the IVIG backing me up.
Thanks again and pray everyone stays healthy!
Marc