Re: Saw the surgeon today regarding adhesions-Chris

From: Ginny King (
Wed Sep 1 21:01:01 1999


I'm sorry if you have already answered this but I get confused and want to understand. The Celebrex is helping your SI pain, but you still have the other pain in the LRQ? I think I told you this before as well but one of my worse pain incidents happened after I had been very sick and had stayed in bed for a long time. When I tried to get up my legs would not work at all and the pain running down the sciatic (sp) nerve was incredible. Once I forced myself up I was able to get around. It was at this time that they did the xray and came back with the diagnosis of arthritis in the sacrum. It took two years to link this to Crohn's. And your right, the pain from aerobics hits me 24 hours later as well. I am sorry to hear about your mouth ulcer, it sounds painful. Can't Crohn's cause ulcers in the mouth as well? I'm glad I have not had this problem and hope I don't start. I'll try to find the toothpaste or use the other kind you suggested to see if it helps the burning. The medication my GI gave me has helped with the burning in my eyes, but not the mouth, so maybe it is the SLS. Off the subject, do you have any good advice for handling the emotional side of the pain? I am really struggling with this as I hate to be out of control. Where I find myself now is angry all the time and I hate it. I don't know how to tell others that want to help how, as I don't know myself. Thanks again. Ginny

At Wed, 1 Sep 1999, Christine M. Smith wrote: >
>Hi GinnyAt Wed, 1 Sep 1999, Ginny King wrote:
>>>Hi Ginny:
>>>I guess that makes your right sided problem a bit different than mine- I
>>>only have very slight tenderness when the right lower quadrant is
>>>pressed. This has baffled the doctors. I describe it as when they
>>>press they are pressing against something which is then pressing against
>>>something else way deep in my pelvis. So I feel slight tenderness way
>>>inthe background somewhere. This makes me wonder if they are causing
>>>pressure against my spine when they do this. The odd thing is that it
>>>was my right side where my colon was attached to the pelvic wall. But I
>>>really don't think this is the problem as it has probably been attached
>>>that way for 20 years.
>>>You may not have to give up tennis forever-I was just suggesting it as a
>>>way to see if your pain improves. My experience was dramatic and it was
>>>only then that I began to think of the possibility of other things
>>>causing the pain. But I would think that if you have the problem with
>>>your spine that you know about it would be affected by any jarring type
>>>of exercise. (unlike swimming)
>>>For the burning in your mouth, have you tried an SLS-free toothpaste?
>>>THere is evidence that some people have any allergy to Sodium lauryl
>>>sulfate-an ingredient used in virtually every toothpaste on the market
>>>as a foaming agent. Rembrandt makes an SLS free product. However, in
>>>my area of the country they have stopped carrying it. I could order
>>>from the manufacturerbut I get by on the supermarket brand of baking
>>>soda toothpaste. The SLS products are expensive and have a very strange
>>>feel to them-they don't foam! It kind of feels like brushing with
>>>spearmint gum. But you might find an improvement with your mouth
>>>problem. Most toothpastes-cooling gel, tartar control, etc. are way
>>>too strong in general for anyone with mouth sensitivy but apparently an
>>>allergy to the SLS is also common.
>>Hi Chris,
>>Thanks for the advice on the toothpaste. I'll look for it when I go to
>>the store. I understand what you mean about tennis. What I can't
>>figure out is why I don't have pain all the time when I play. Maybe
>>something injures my back during play and other times I don't. Step
>>aerobics on the other hand always causes me problems and so I have
>>modified my workout routine. I wish I had access to a pool as that is
>>something I love to do and I know would be much easier on my spine. It
>>does sound like our pain is a bit different as mine is specific to a
>>certain area. The only time I really had refered type pain was when
>>they did the sig. During the test the pain was unbelievable and located
>>itself in the right side. I thought he was tearing my intestines out
>>and I will never have that test done again unless they can sedate me for
>>it. I guess with the Crohn's though they will periodically do a
>>colonoscopy instead, which while the prep was bad, I tolerate the test
>>pretty well. I wouldn't rule out Crohn's for you though just because
>>the pain is different because as you know you could have the
>>inflammation anywhere, maybe just not as close to the surface. I don't
>>know, but you sure have a lot of the other symtoms that sound like
>>something more is going on than ahesions and your back. Best wishes.
>Hi Ginny:
>It isn't just any of the Rembrandt toothpastes-they have all kinds. But
>one kind is called "SLS-free". It used to be in a purple/white box but
>I don't know if that is still the case. It would be worth trying. I
>got good results but it is expensive, plus it was impossible for me to
>get easily. I do have pain in one specific area-only the lower right
>quadrant. (plus the back near the right SI joint but this is only since
>May and not now on Celebrex) I had/have no pain at all on the left side
>and it was the left side that I had the massive adhesions in. I didn't
>always have pain when I did the step aerobics (and never at the time, it
>was always almost 24 hours later that I would have the attack) but it is
>true that I have never had one of these nighttime attacks since I
>stopped the class the last week of May. However, when I had the first
>nighttime attack I immediately recognized it as something I had had
>before, although I can't date the incident. At the time I dismissed it
>as having slept in the wrong position because the strange thing is that
>when these attacks occurred I would flip myself over in bed and it would
>be much better. Also, getting up and walking around would help too. I
>really don't think this type of reaction would be caused by crohn's but
>I have a mixture of all different kinds of pain.
>You could be right about the pain coming from the area of the small
>intestine that is not near the surface. There is lots of area there,
>all folded and twisted and packed in there. I keep thinking of that
>woman that came into the hospital with pain and nothing else besides
>occult bleeding. No tenderness, no gi symptoms. It turned out to be
>Crohn's of the jejeunem, detected by CT Scan. I also read that
>sometimes the other symptoms of crohn's come before the intestinal
>symptoms, and according to the doc on the internet, sometimes the other
>symptoms are all you get. Maybe in these cases you would get
>inflammation detected by biopsy, but no subjective gi symptoms.
>I think I am calling my pcp tomorrow about this canker sore I still
>have. Actually it is much more than a canker sore, I think it would be
>called a major apthous ulcer. When I used to get these years ago on a
>regular basis (before
>knowing about SLS and lysine) my pcp prescribed a decadron rinse which
>healed them very quickly. This one is at least 1/2 inch long and almost
>as wide. I'm afraid the celebrex might be stopping it from healing.
>Chris S.

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