I am not even sure why I bother going. I am doing a lot better, but have infrequent episodes of pain. This was a 6 mo followup appointment to check in after I weaned off Entocort. I've been off Entocort a few months. BMs aren't normal but they're bearable! I am usually done after 1 or 2 in the AM, and that's fine by me.
He is so bizarre, he speaks into a recorder about my case while staring into my eyes dead on. Psychopathic behavior.
Told me I had IBS, which was causing the painful episodes. I told him I thought it was inflammation. He schooled me on inflammation, saying it's a technical term, blah blah, and I clearly am having spasms which is IBS. As if IBS is a technical term.
Argued with me about why I am on an antidepressant, which I said was to help regulate my motility -- isn't that a normal treatment for IBS?? I told him I went to a psychiatrist to get on something, since he wasn't interested in prescribing me one six months ago. He said he didn't remember that conversation. I guess it wasn't recorded.
Gave me a prescription for NuLev (Hyoscyamine) to help with the episodic pain/spasms. At least this could be helpful.
Thanks for allowing me to vent.
Nancy :)
Another disappointing GI visit.
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UkuleleLady
- Gentoo Penguin
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- Location: Texas
Another disappointing GI visit.
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
That does seem a bit creepy. It makes one wonder if he's just paranoid about legal liability, or he's trying to intimidate his patients so that they won't be as likely to sue if something does go seriously wrong. Or maybe he's just taking notes in preparation for writing a book about his "successful methods" for treating MC.Nancy wrote:He is so bizarre, he speaks into a recorder about my case while staring into my eyes dead on. Psychopathic behavior.
Hopefully the hyoscyamine will do what it was prescribed to do without any side effects, but in case it doesn't stop there, did he mention that it not only slows down motility (which is it's primary mechanism of action), but it also slows down other functions of the digestive tract, such as mucus secretion? IOW, it can cause gastroparesis (delayed or incomplete stomach emptying), reduced stomach acid, constipation, GERD, and dry mucus membranes (not only in the stomach, but in the mouth and intestines as well). Gastroparesis typically leads to nausea, if the slow down is significant.
I hope it does the job, without any side effects.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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UkuleleLady
- Gentoo Penguin
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- Location: Texas
Hi Tex, thanks for your reply and for clueing me in on the side effects of hyoscyamine. I only plan on taking it if I'm desperate. We'll see if it helps. Hopefully I won't have another episode to find out!
Lori, Thanks for the laugh. Good suggestion!
Lori, Thanks for the laugh. Good suggestion!
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi, Nancy,
The doc could be autistic or something, which would affect his bedside manner but not necessarily his medical knowledge. Certain personalities, I've been told, gravitate toward certain fields. My GI is much more intense than some of the my other doctors, but I know she can't help her personality and I trust her.
I take hyoscyamine and it helps tremendously. When I don't take it, I get certain pain that is very unique and very intense--as if someone took a knife and thrust it in me. That pain is caused by intestinal spasms. (If memory serves, I believe my initial GI said it could be caused by faulty nerve action.) The side effects were most noticable in the beginning, but they do get better as you adjust.
I hope the new medication helps and that you continue to find solutions. As my GI reminds me, sometimes ID can be complicated; meaning, sometimes a patient can have more than one issue going on. When that is the case, it can be somewhat of a guessing game to pinpoint causes and solutions.
The doc could be autistic or something, which would affect his bedside manner but not necessarily his medical knowledge. Certain personalities, I've been told, gravitate toward certain fields. My GI is much more intense than some of the my other doctors, but I know she can't help her personality and I trust her.
I take hyoscyamine and it helps tremendously. When I don't take it, I get certain pain that is very unique and very intense--as if someone took a knife and thrust it in me. That pain is caused by intestinal spasms. (If memory serves, I believe my initial GI said it could be caused by faulty nerve action.) The side effects were most noticable in the beginning, but they do get better as you adjust.
I hope the new medication helps and that you continue to find solutions. As my GI reminds me, sometimes ID can be complicated; meaning, sometimes a patient can have more than one issue going on. When that is the case, it can be somewhat of a guessing game to pinpoint causes and solutions.
Re: Another disappointing GI visit.
UkuleleLady wrote:I am not even sure why I bother going. I am doing a lot better, but have infrequent episodes of pain. This was a 6 mo followup appointment to check in after I weaned off Entocort. I've been off Entocort a few months. BMs aren't normal but they're bearable! I am usually done after 1 or 2 in the AM, and that's fine by me.
Told me I had IBS, which was causing the painful episodes. I told him I thought it was inflammation. He schooled me on inflammation, saying it's a technical term, blah blah, and I clearly am having spasms which is IBS. As if IBS is a technical term.
Gave me a prescription for NuLev (Hyoscyamine) to help with the episodic pain/spasms. At least this could be helpful.
Nancy :)
I just saw my GI too, Nancy. She seemed uncomfortable that I had done research set a course. I was not given the opportunity to ask questions. She was a bit surprised that I am not able to eat raw fruits and veggies yet. I let her know that I am not surprised. I told her about my Entocort reduction plan and she said to try to get off within the next two month. She said my pill splitting is an interesting idea and she will have to keep it in mind. She told me that I have to keep in mind that I am a very complicated case, that I have IBS, MC, and many food allergies. I held back from telling her that I am a typical case of someone with severe MC.
By the way, my IBS has improved leaps and bounds since I completely eliminated my problem foods. I've tried Hycoscyamine about a year and a half ago and on another occasion several years prior. It didn't help. I'm down to 1 mg of Entocort per day and my greatly reduced IBS symptoms are holding strong.
I think most of the doctors who deal with MC are at a loss.
Hi Nancy,
I also took hyoscyamine. It was prescribed for cramping that I had for a few months (gone now, wooohooo!). I can't say it helped a lot. What it did do was sedate me enough that it put me to sleep, so I made sure I never took it unless I was home because I was going to have to lie down. Just be aware it can be very sedating.
I hope it eliminates your pain.
Good luck,
Carol
I also took hyoscyamine. It was prescribed for cramping that I had for a few months (gone now, wooohooo!). I can't say it helped a lot. What it did do was sedate me enough that it put me to sleep, so I made sure I never took it unless I was home because I was going to have to lie down. Just be aware it can be very sedating.
I hope it eliminates your pain.
Good luck,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
for you
for himWow, Nancy, I'm tempted to ask who your GI is, or at least his initials, because my GI did the EXACT same thing with the staring and the voice recorder, and I know we're both in Austin. He initially diagnosed me with "Post-Infectious IBS" prior to my colonoscopy. Fortunately, I found this board soon enough that there was no need for me to go back to him as I really wanted to avoid the Entocort he prescribed after my pathology report showed Intraepithelial Lymphocytosis that was "suggestive" of MC, but not diagnostic because I'm "too young" (39) which I quickly learned was nonsense.
In any case, I hope the NuLev helps you, which will have made the visit with Dr. Creepy worth your while.
Fiona
In any case, I hope the NuLev helps you, which will have made the visit with Dr. Creepy worth your while.
Fiona
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darlagroat
- Little Blue Penguin
- Posts: 31
- Joined: Thu Sep 12, 2013 5:04 pm
- Location: California
Dicyclomine
I have recently been on Dicyclomine (Bentyl) which is an antispasmodic medication. It actually seems to be helping. I continue with eliminating the offending foods.
Has anyone taken this and have any thoughts on if it causes other issues? I can't see any contraindications regarding MC, but am I missing something?
Has anyone taken this and have any thoughts on if it causes other issues? I can't see any contraindications regarding MC, but am I missing something?
Hi Darla,
You should have already experienced any side effects by now, if they were likely to develop, so you're probably OK with Bentyl. If you want all the gory details though, in addition to the issues that I mentioned above (dry mouth, gastroparesis, constipation, GERD, etc., you should look out for any signs of dizziness, blurred vision, nausea, light-headedness (especially with the injectable form), drowsiness, weakness, or nervousness. For example, I wouldn't use it if I had GERD, because it can make GERD worse.
In summer, if you spend a lot of time in the heat (or exercising), be aware that it can inhibit the proper functioning of sweat glands, thus raising the possibility of overheating/heatstroke. For many users, it tends to affect the urinary sphincter, resulting in urinary retention.
It can cause vision effects, such as inhibition of the iris sphincter muscle and other muscles, possibly resulting in blurred vision. All muscarinic antagonists can trigger glaucoma, but to put this into perspective, even Benadryl is a muscarinic antagonist.
And for a few users, it can cause shortness of breath and/or nasal congestion. But again, this applies to many drugs. In general, as drugs go, it's a relatively safe drug.
I'm not aware of any specific reservations concerning MC or Crohn's disease, but Bentyl is contraindicated for severe cases of ulcerative colitis, presumably in relation to the possibility of a blockage and/or impaction due to constipation (but I'm just guessing about the reason that I mentioned).
Tex
You should have already experienced any side effects by now, if they were likely to develop, so you're probably OK with Bentyl. If you want all the gory details though, in addition to the issues that I mentioned above (dry mouth, gastroparesis, constipation, GERD, etc., you should look out for any signs of dizziness, blurred vision, nausea, light-headedness (especially with the injectable form), drowsiness, weakness, or nervousness. For example, I wouldn't use it if I had GERD, because it can make GERD worse.
In summer, if you spend a lot of time in the heat (or exercising), be aware that it can inhibit the proper functioning of sweat glands, thus raising the possibility of overheating/heatstroke. For many users, it tends to affect the urinary sphincter, resulting in urinary retention.
It can cause vision effects, such as inhibition of the iris sphincter muscle and other muscles, possibly resulting in blurred vision. All muscarinic antagonists can trigger glaucoma, but to put this into perspective, even Benadryl is a muscarinic antagonist.
And for a few users, it can cause shortness of breath and/or nasal congestion. But again, this applies to many drugs. In general, as drugs go, it's a relatively safe drug.
I'm not aware of any specific reservations concerning MC or Crohn's disease, but Bentyl is contraindicated for severe cases of ulcerative colitis, presumably in relation to the possibility of a blockage and/or impaction due to constipation (but I'm just guessing about the reason that I mentioned).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Hi Friends,
Thanks for the kind words and for all your experience with NuLev. I really appreciate it when people chime in with their experiences. I believe the case study is woefully ignored by physicians.
I went to visit friends in Houston for the weekend and had a great time kayaking, enjoying my cooler of safe foods and even a few sorghum beers (Bard's Tale Ale).
Haven't needed the NuLev yet, hopefully it'll just sit in my drawer for a while.
Happy MLK day.
Nancy
Thanks for the kind words and for all your experience with NuLev. I really appreciate it when people chime in with their experiences. I believe the case study is woefully ignored by physicians.
I went to visit friends in Houston for the weekend and had a great time kayaking, enjoying my cooler of safe foods and even a few sorghum beers (Bard's Tale Ale).
Haven't needed the NuLev yet, hopefully it'll just sit in my drawer for a while.
Happy MLK day.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi Nancy, I just replied to your PM. For anyone who was following this thread and just happened to be curious, it turns out Nancy and I DO have the same weird GI! Of course we won't name him here so as not to get anyone in trouble, but it was a funny realization and we had similar negative experiences with him.
Fiona
Fiona
How about that. I believe that's a first for this board.Negative experiences are common, but not from the same doctor.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.