Advice Needed for Upcoming GI Appointment

[heatheravise]

I have been on budesonide since Dec. 4th and it hasn't helped at all. Thanks to this forum I have found some foods I can tolerate and was able to get my weight up enough to get my menstrual cycle back. I am 5'3, 48 years old, now weigh 115 (was at 108 in Dec.) I am working with a nutritionist who has also been helpful. So overall I feel healthy. I cannot introduce any food into my diet or my diarrhea comes right back. My number one problem is severe rectal/anal itching. And leg itching (the leg itching I have had since being in my 20's and I use a steroid cream on them) but the rectal/anal itching is new and getting worse instead of better, even with my very strict diet and when I don't even have a bm at all. My leg itching is also getting worse. What I eat is a soup made with bone broth, carrots, potatoes, zucchini and ground turkey (after months of gradually finding a few veggies I could tolerate-this was a long process, a smoothie made with coconut milk, strawberries, banana and collagen powder-occasional protein powder that is pure pea protein, cod, sweet potatoes and avocado. I am testing some black and green olives, herbal tea, water. That's it.
Should I go forward with another drug? I know this is what my GI will want to do since he does not believe that diet has any effect on MC. I have read the medical information and I see why he says that. This is what the medical community has determined. I know different from reading these forums and the book by Wayne that is the most helpful.
If he wants to try a different drug (than budesonide since it hasn't worked) should I try one? I read about a couple on line and there is no way on earth I want to take Prednisolone after reading the side effects. But mesalamine doesn't sound as bad. I am good at staying on a very strict diet and will still do so but the itching is more than I can tolerate even putting medication on it (which my GI said is not good because it thins the skin). The medication recommendations I read on this forum are from 2015 (that post) so I don't know if that is current. If the reason they are used it to reduce swelling of the colon do we even have swelling of the colon? I know it is meant for ulcerative colitis and I don't know if we have the same issues causing our problems. Any advice before my appointment on May 19th is very much appreciated. Thank You!

[tex]

Hi,

After carefully reading your post, here are my thoughts:

If I read your post correctly, as long as you're careful with your diet, diarrhea is not a problem. So why would you need a medication for MC, from your doctor? If he does suggest one, it will probably be either Pepto-Bismol, or mesalamine. Mesalamine is usually slower acting than budesonide, and less effective, although it does work for a few MC patients. Note that a common complaint about mesalamine is hair loss. If he suggests anything stronger, such as an immune system suppressant, I believe I would gracefully decline to try that option.

The itching issue on your legs may well be due to a histamine problem. I have that problem myself, if I eat any high histamine foods. In your case, the bananas would appear to be the culprit in your diet. The only way I can eat bananas is to limit the amount to about half a green or barely ripe banana twice a day, or take a diamine oxidase enzyme (DAO) supplement. Otherwise, the itching can be maddening.

The rectal itching is almost surely a different issue. The most likely cause is either tinea cruris, or pin worms. Either one would require a medical diagnosis from your GP and a prescription medication (a fungicide, or an anthelmintic, depending on the issue) to resolve the symptoms. As with resolving the histamine issues, eliminating the cause of the problem is always much better than trying to treat the symptoms.

In your last sentences, I'm not sure what medication you're referring to, but if you can control your MC symptoms with your diet, why would you want to take any medication? The diet has no side effects, unless you consider better health to be a side effect.

I hope this helps,

Tex

[heatheravise]

Thanks for the advice. I don't want to be on any medication if I can get the itching under control. I had never thought of histamines being a problem for me, even after reading the book. I will eliminate bananas and see if that helps. Also I will get tested for pinworms. I am a teacher and actually thought of that. It's common in elementary schools but since it wasn't something that itches all of time I didn't think that was it. Thanks for the advice. I will be prepared to say no to my GI when I go to my appointment. My GI had said that he was going to put me on a stronger medication if the budesonide didn't work. He is very arrogant and difficult to talk to. I will see a new one in September who has a reputation of not being such a jerk.

[heatheravise]

Hi,

After carefully reading your post, here are my thoughts:

If I read your post correctly, as long as you're careful with your diet, diarrhea is not a problem. So why would you need a medication for MC, from your doctor? If he does suggest one, it will probably be either Pepto-Bismol, or mesalamine. Mesalamine is usually slower acting than budesonide, and less effective, although it does work for a few MC patients. Note that a common complaint about mesalamine is hair loss. If he suggests anything stronger, such as an immune system suppressant, I believe I would gracefully decline to try that option.

The itching issue on your legs may well be due to a histamine problem. I have that problem myself, if I eat any high histamine foods. In your case, the bananas would appear to be the culprit in your diet. The only way I can eat bananas is to limit the amount to about half a green or barely ripe banana twice a day, or take a diamine oxidase enzyme (DAO) supplement. Otherwise, the itching can be maddening.

The rectal itching is almost surely a different issue. The most likely cause is either tinea cruris, or pin worms. Either one would require a medical diagnosis from your GP and a prescription medication (a fungicide, or an anthelmintic, depending on the issue) to resolve the symptoms. As with resolving the histamine issues, eliminating the cause of the problem is always much better than trying to treat the symptoms.

In your last sentences, I'm not sure what medication you're referring to, but if you can control your MC symptoms with your diet, why would you want to take any medication? The diet has no side effects, unless you consider better health to be a side effect.

I hope this helps,

Tex

Tex, I would like a bit more advice. I was able to get in to my GP this morning. Upon a rectal examination she diagnosed me with small hemorrhoids both inside and out which she said would cause the severe itching. The frequent bm's I am starting to have again recently are irritating them. I am cutting out the bananas to see if that helps the itching on my legs and rereading the MC book. So here is my question related to my upcoming appointment: Since lowering my dose of budesonide 3 weeks ago to 6 instead of 9 (I assume it is mg's -2 pills instead of 3 each morning) my symptoms are returning. I am having 4-6 loose stools a day and was doing really well (down to one or two formed stools a day max!) on my very strict diet. Is it safe to go back to 9 mg a day even though I have been on them since Dec. 4th? I was afraid I would get side effects and everything online said people take the full 9 mg for only eight weeks and then go down to 6mg and eventually 4 mg- if needed for maintenance. I was hoping that would be me. I actually had in my head that the budesonide wasn't helping at all and that my diet alone had caused this success but now I have to rethink my assumption. I have not added anything at all to my diet that I was doing so well on. The only difference was lowering my dose. What are your thoughts on going back to 9 mg? I know my doctor will want me on something stronger which I do not want at all! I was doing so well with diet and the 3 pills each morning. The pepto never helped at all just in case you recommend that for me. I was feeling better than I had in five years until the past ten days and things are gradually getting worse each day. Thanks for any advice!

[tex]

The side effect risks of budesonide aren't chiseled in stone, so if you're not having any so far, you can probably get away with the full dose for a while. Those risks are much lower at a lower dose, but sometimes we have to do what we have to do. If you want to stop the diarrhea, apparently you still need the full dose.

Tex

[heatheravise]

Thanks for you help. Without this board and your book there would be nothing out there to help me on my journey. The diet information found on here is life saving for people with MC.

[brandy]

Go back to 9 to stabilize for awhile.

I think we've had Europeans on 9 mg for 5-6 months before they stepped down. The European docs seem to be okay with this.

The alternative.....WD.....is not healthy for us. We are absorbing no nutrition when we have chronic WD.