I'm back and need some advice....

[Pam V]

Hello All ~ After being an active participant in this forum back in 2017, I found great success with advice that I received from this forum and with diet changes that I made. I had done testing with Enterolab - although I needed to stay away from gluten, dairy, soy, and egg; my other intolerances weren't too bad and I've been living a pretty "normal" life. There have been a few times when I have had issues; however, when I have eaten a pretty basic diet for a few days, things improved quickly. I've been struggling the past few weeks. At first, I was having a couple of days with diarrhea but then things cleared up. For the past week, I have not had success turning things around. I've cut way back on the size of my meals and have gone pretty basic - a plain baked red potato (no df butter) for breakfast, white rice and ground turkey or beef for lunch, and rice/potato and some type of protein that I have been able to eat. The only improvement that I can report is that I am not having multiple incidents of diarrhea. Not to be gross but it's more sludgy than watery. I generally only poop in the morning so I'm not in a situation where it's an issue after each meal. Do you have any advice? I hate to go back to my GI or go back to budesonide (I took it for about 6-8 months back in 2017 and have done really well without it since then). I never tried Pepto Bismol - would you give that a try and if so, would I only take the normal dosage? Any advice that you may have is greatly appreciated. For what it's worth, we have had a terribly hot summer and I suspect allergens are worse (I do take Zyrtec each day), I have had quite a few extra stressors that I am working on trying to minimize (easier said than done:). Thank you in advance for your suggestions!!! Pam

[tex]

Hi Pam,

Sorry that you had to come back. I get the impression that there may be something in your diet causing enough inflammation so that you're always about one step ahead of a flare. Or, it could be the stress. if it's the stress, you'll probably have to get that under control before your MC symptoms can be resolved. I would start keeping a food/stress journal, so that I could correlate my meals and my stress level with my symptoms. And if you've added anything new lately, view it with suspicion.

I hope this helps,

Tex

[Pam V]

Thank you for your input, Tex. My diet had expanded over the years (maintaining avoidance of all gluten, dairy) - I avoided soy but occasionally would take a scoop of baked beans or hummus and didn't seem to have problems. I have stayed away from eggs but occasionally would have it if it was in a gf/df/soy free baked good and hadn't had problems. I visited my daughter in Oregon in late June/early July and was very nervous about that trip as it would involve a lot of eating out (she's in grad school and the town she lives in didn't seem to have many options when I moved her in last summer). My older daughter came with me this year and she researched and found a bunch of places that had good options and I had absolutely no problems at all that week. Things were off one/two days a week for the past month and this past week has been daily. I bought some Pepto yesterday (boy that tastes nasty) - I did four doses (significantly less than the maximum allowable amount). This AM, I had a formed but soft poop - went out for my 3 mile morning walk and came home and had a sludgy poop. I was in bed by 8:30 last night and will make sure to get plenty of rest. All week my diet has been pretty bland. I'll keep it up ~ thank you again for your help. I have not posted to this board in years but have continued to check in from time to time ~ I'm always very grateful for the knowledge shared by this group. Best wishes - Pam

[Marcia K]

Hi, Pam. Sorry that you're having issues again. I'm a Pepto success story. My GI recommended the protocol when I was first diagnosed. I took 8 tablets/day for 8 weeks. After a few weeks I cut back to 6/day because I became 6. Maybe starting out with 4 Pepto/day would help to get you back on track if Pepto is something that you want to try. I didn't chew the tablets because my GI said my tongue would turn black. I cut them in 1/2 & took them with water. One of the side effects of Pepto is tinnitus. I didn't have any issues with that. I hope you're back on the road to remission again soon.

[Erica P-G]

Hi Pam,

I hope you feel better soon….the pepto idea is a really good one… plus stress can create a perfect storm that can seem like forever to get out of. I’m learning to live with a touch of what you are going through as the stress level around me is something I can’t get away from just yet (my mom is living with us and it may take a couple months to get into her newer place….and I’ve been watching grandkids as needed in between working too).

So hang in there….if you are in an area that has farming going on the extra dust and smoke from any fire is sure to stir up the senses too….

Hugs
Erica
Walla Walla WA

[Pam V]

Thank you for your suggestions, Marcia and Erica,
I only took two Pepto yesterday after having another sludgy morning and am up at 5:00 AM today (first with sludge, then watery). All I ate yesterday was a plain baked red potato, a banana and some grilled fish and broccoli. I’ve lost 5 lbs this week.
I didn’t know if I had to chew the Pepto so I’m pleased to hear I can take them with water. How would you recommend taking them (2 in the morning, noon, 5:00 ish and bedtime?). I’m grateful for your input.
Best wishes to you both ~ Pam

[Kari]

Pam,

I cannot take Zyrtec. According to the celiac board, someone called Zyrtec and was informed that all their products contain both dairy and gluten. Perhaps your daily use of Zyrtec is the culprit?

Best of luck to you,
Kari

[Pam V]

Wow, Kari - I never knew that! Thank you for the information! Would you happen to know of an antihistamine that would be gluten, dairy and soy free? With so many people having sensitivity to gluten and dairy, you would think the drug companies would avoid those products.

I tried very hard to keep this weekend restful - you can't always control the people around you but I did control my diet and got extra rest. If my home was getting stressful, I took a ride or went to the Town Common and sat on a bench in the shade and read. I took 8 Pepto on Saturday - yesterday I only took 3 because I didn't feel the need to go and I didn't want to cause problems by backing things up too much. I made my own bone broth, which was a little disappointing- It tasted kind of greasy ( This morning I can see the jar that was in my refrigerator overnight has a good layer of fat that has risen to the top). I'm not sure if that is good for me to drink or if I should scoop it out... I did finally see Norman this morning, which was good. I figured that I would still take 2 - 3 Pepto today and kind of ease off of that regimen. If I was able to catch things before it totally got out of control, I will be so grateful.

I'm especially grateful for the support and input that I received - thank you so much! Even though I've been living with this for five years, my husband and son just don't seem to get it. My daughter who is 26 and lives away from home is supportive (she also has gluten/dairy issues),as does my younger daughter who is in school in Oregon. This really is a very lonely and depressing disease - I'm okay most of the time but when the you know what hits the fan, it can be very lonely. Thank you so much for being there. Fingers crossed that things continue to go well.

Best wishes to you ~
Pam

[Kari]

Pam,

I have not found any over the counter anti histamine that I can tolerate. I had a compounding pharmacy create one for me that was clear of my allergens. However, I had to get a prescription from my PCP to get it done. You may want to talk to your pharmacist or PCP for advice. This issue has come up here before, and I seem to recall that one of the Claritin products is the only one that may be free of both gluten and dairy.

Hope this helps.

Kari

[TXBrenda]

Thank you for the information regarding Zyrtec. I take a generic form of Zyrtec. I will call the toll free number on the bottle tomorrow and see what they have to say.

[Erica P-G]

I’ve found Allegra works for daytime and benedryl at night. I know there is controversy with the H1 Benedryl causing tinnitus but I feel you have to take it often and daily for a long time before that becomes an issue. So in the meantime I would use it at night for a while. Our bodies need to get into that deep REM sleep where healing takes place…..I can tell when I don’t get that deep sleep because my morning bathroom routine is majorly disrupted

Enterolab testing A1 C1 narrowed my food down for me….I ate the boring food and as much of it as I needed to in order to feel full every day. It took a while and I made sure to take my Vitamin D plus magnesium (or applied magnesium lotion) daily. My levels of VitD are above 50 I try to keep them closer to 80…..I feel this has helped with the healing process and has kept me from digressing too.

There are so many pieces to the healing puzzle when it comes to Colitis….it is depressing and lonely. Tell yourself you are eating to heal and be kind to yourself….it feels like it takes forever but I’m sure you’ll see progress soon

Erica

[Pam V]

Thank-you, Erica and Kari!!! I'm going to pick up some Allegra today. I'm seeing some improvement sticking to very basic foods. When I had Enterolab testing in 2017, it showed issues with gluten, dairy, soy and egg, but I was pretty lucky with my reactivity to other foods. I am hoping that I haven't developed an intolerance to one of the foods that I have been eating. For now, I'm keeping things very basic. Thank you all for your kind words. After a couple of days of feeling pretty miserable (and sorry for myself), I am feeling more hopeful. Isn't it hard when you tell people how you feel and mention that you lost weight and they reply "I wish I had that!". How lucky I was to find this group back in 2017. I've gotten great advice over the years and it is so reassuring to be able to converse with others who are walking down the same path.

I hope you all have a great day and thank you, again!

Best wishes ~
Pam