Colestipol was not a piece of my puzzle

DebE13 · Post by **DebE13** » Wed Sep 16, 2015 7:58 pm

I was so excited to see immediate results when starting the colestipol. For two days I only made a trip to the bathroom twice each morning and things were more in the arena of mud than WD. Motility was also much slower. Day three everything reverted back to the norm- 4-6 trips of mostly watery D. After that, things kept going downhill. In general, I felt crappy all week and I got upper stomach grumbles and bad discomfort after taking the pill. After going through this for a week I dropped the dose to one pill a day for the second week. I could not bring myself to take it last night and don't plan on it tonight. Sadly, sitting on the couch twice tonight I had rumbles that resulted in being too late to get to the bathroom. It was a "what the heck was that?" moment each time. So the familiar thought of "happiness is a dry fart" came to mind. I'd like to laugh but can only muster a slight smile at my current situation. I'd take three entocort right now but don't know if it would cause any problems with my sleep so will wait until morning. I haven't taken any entocort since August 14th. The longest I've gone without these similiar problems was 23 days.

I can't help but wonder if I'm cutting it too short but the idea of creating more discomfort is too much. It was at least worth a try.

crervin · Post by **crervin** » Thu Sep 17, 2015 9:50 am

Deb,
Have you tried the questran generic? The same thing happened to me the other day. Is there a lot of seasonal allergies where you are? I ruled mine a histamine overload and loaded up with antihistamine in addition to allegra. It was actually better the next day. I just increased mine last night to a whole packet of chloestramine (spell?), just to see. I prefer lowest dose of anything. Today it was more formed than my previous BM. Don't give up yet, try switching meds (I felt the same way. I read somewhere it may take 3 weeks).

Hope this helps!

dfpowell · Post by **dfpowell** » Thu Sep 17, 2015 3:38 pm

Deb,

Sorry it did not work so well for you. I have been taking the powder for about 7 weeks, within a week of starting the cholestyramine, I added 1-2 doses of psyllium husk powder and find that has also given me added regularity. I know we are all different, just thought I would mention what has been working for me. Prior the chlestryamine, I could not get a consistent reduction in my symptoms with very strict diet changes or any of the other medications.

DebE13 · Post by **DebE13** » Sat Sep 19, 2015 3:49 am

Thank you both for sharing what worked for you. I tried it years ago without any sucess and thought it would be worth another try. It may have been just a fluke that I noticed improvements. Frustrating part is that maybe I was just having on off week and sime of my discomforts were unrelated. Maybe I will try again another time. My PCP just gave me a perscription iron pill that I'm supposed to take three times a day because my ferritin continues to be low. I will only be able to fit in twice a day because i take my thyroid meds twice a day and the timing between the two is hard to fit in. Add the colestipol and it's a scheduling nightmare. If it was working I would have to put more thought into it. After two days back on entocort I'm back to a more normal, not-so-normal me.

I've found that Psyllium makes my throat constrict. I have to be careful with my fiber intake because I do notice a difference when I have too much.

It's so interesting how we all have the same issue and there is no single solution.

crervin · Post by **crervin** » Tue Sep 22, 2015 5:08 am

Deb,
Sadly I'm with you on this. I am stopping my questran, as I believe it's causing more gas and explosive WD. It was a fluke those 2 days I saw normalcy. I'm starting to think like the drs

....

Polly · Post by **Polly** » Tue Sep 22, 2015 7:36 am

Deb and Martha,

Sorry it didn't work for you. I have read that the initial problems with gas and bloating frequently disappear after a few weeks.

Like Donna, I continue to have success with cholestyramine. For the first time in years, I have no fear that I will have an accident somewhere. What a feeling of freedom it is!

Polly

crervin · Post by **crervin** » Tue Sep 22, 2015 9:54 am

Polly,
Did you still experience major WD or worsening symptoms after a week? I can't stop going to the bathroom today which isn't the norm. I keep thinking it's causing more problems now as to I'm barely eating now. Today I'm so discouraged and thought about stopping tonight.....

Today is a very bad day for me. I am scared to leave the house....back to day 1, but without Krispy Cream doughnuts!

DebE13 · Post by **DebE13** » Tue Sep 22, 2015 11:26 am

Thanks Polly,

I do wonder if I should try again and give it more time. It was a bad week but the though of it possibly working still sticks in my head. I may have been too quick to give up. ???

My ferritin test came back and my PCP put me on an iron pill that I'm supposed to take three times a day. I can only fit in two doses because I take my thyroid meds twice a day and fitting them all in plus eating gets tricky. I don't know how I would fit in the colestipol since they all interfere with each other. My ferritin was at 13 and I took Proferrin for three months and it went up to 21. It's still too low so I asked for a prescription. Hopefully it will increase a bit faster with this pill. I can't say I've noticed a difference but my endo keeps telling me I can't blame everything on my thyroid. He is right, to a point.

Polly, that is great news that it helps you. It would be great to go out without worrying!

Post by **tex** » Tue Sep 22, 2015 11:31 am

To add my 2 cents worth here (and that's probably all it's worth, because this is just my personal opinion) — IMO treatments that cause the very symptoms being treated to become significantly worse before any improvements are seen, are very suspect. Why? Because that type of reaction typically implies a forced tolerance, and forced tolerances make me nervous.

I'm not saying that forced tolerances are not effective — I'm just pointing out that there can be hidden consequences, because as we all know, there are no free lunches.

Tex

crervin · Post by **crervin** » Tue Sep 22, 2015 11:52 am

Thank you Tex, I value your opinion very highly!!! I will discontinue tonight and see where it leads me. I was holding on to BAM being my final answer for resolving my D. For the last 3 or 4 days it's back to my gluten days and everything I eat is causing issues. My stress magnified 1000 fold last night when I thought about rice being a problem. Today, I really shouldn't have left the house. During my 4 yr olds field trip on a farm mind you, I held my breath because breathing made me go to the bathroom!

Holding on to better days ahead!

Thank you so for your opinion!!

Polly · Post by **Polly** » Tue Sep 22, 2015 12:14 pm

Martha,

No I did not experience any worsening of symptoms - only increasing improvement day by day. Of course, the usual watery D returned quickly if I missed a dose or two or discontinued taking it. It does sound like you are reacting to it. Which prep are you taking?

Deb,

It makes sense to discontinue at this point until your ferritin improves. Iron pills are supposed to be constipating anyway - are you finding that to be true? If/when you decide to do another trial, it will be easier without worrying about the ferritin. The good thing about the colistipol is its dosing versatility - some do fine with once a day before bed. But it does take time to play around with the doses and times. You are so on target about how great it is to go out without worrying. Over the years, that thought often determined the type of plans I would make...always making dental apps. later in the day, taking my own car instead of driving with friends, not being able to take transportation (like the light rail) with no immediate toilet nearby, etc. I feel so "free" for the first time in ages when setting my schedule!

Polly

Post by **tex** » Tue Sep 22, 2015 12:29 pm

Polly wrote:Which prep are you taking?

Excellent question. For example, Questran (cholestyramine) powder contains the following inactive ingredients: acacia, citric acid, D&C Yellow No. 10, FD&C Yellow No.6, flavor (natural and artificial Orange), polysorbate 80, propylene glycol alginate and sucrose. But Questan Light contains a different set of inactive ingredients: aspartame, citric acid, colloidal silicon dioxide, D&C Yellow No. 10, FD&C Red No.40, flavor (natural and artificial Orange), maltodextrin, propylene glycol alginate and xanthan gum.

Ingredients such as citric acid, various dyes (especially yellow No. 6), aspartame, maltodextrin (usually made from corn), and xanthan gum can be a problem for some of us, especially the aspartame, which seems to cause virtually all of us to react.

Why they feel the need to add all that gut-irritating junk to a medication that's intended to be used to treat digestive system issues is beyond me. There's no way that any of that stuff can help to make the treatment more effective. But some of those ingredients can certainly prevent the med from working as intended.

So maybe some of these inactive ingredients are the problem, and maybe there's a version (brand) out there that is free of problem ingredients.

Tex

crervin · Post by **crervin** » Tue Sep 22, 2015 1:19 pm

The cholestyramine light, those ingredients have to be my worsening symptoms. Also, several days ago, I drank 3 sips of my childs sunkist orange drink (stopped when I realized what I was doing). It bothered me 10 minutes later, course nothing to this magnitude.

I did think about calling to get new script, but thought Deb was seeing gas with even the pill form. Do you think it would be advantageous to try the colestipol (after a week or so)? I guess I'm really just drawing at straws now trying to resolve the major D.

I may blow away if I take more food out of my diet. Today, I'm starting over though! New notebook and everything, plus no rice and especially no coconut oil. Oh boy, going to beach in 2 weeks with family. So hoping to get back to my normal D!

Thank you guys for listening to my roller coaster life!! My husband is no talker and sometimes not a listener!

Vanessa · Post by **Vanessa** » Tue Sep 22, 2015 2:58 pm

Deb

I just wanted to say that I think about you a lot and hoping that healing is under way. You are a warrior to be living this right now and my healing waves go out to you. You never play the victim, and to me that is incredible. You are a bad mutha, don't forget that. I apologize if my words are crossing boundaries or seem weird.

Polly

I think about you also....when I'm having a very hard time and get nervous that I may actually be dying, I think " wait a minute, no, Polly went through this for years." I guess my point is, when we share our stories,
We provide so much comfort to the other members here. We are not alone. There is a lot of strength
in that! So glad you are feeling better! Words can not describe.....

To two very strong women!

dfpowell · Post by **dfpowell** » Tue Sep 22, 2015 3:33 pm

Martha,

I am using the regular powder form of cholestyramine by Sandoz. I get it in a can, it is cheaper than packets, and also I can more easily adjust the amount I take. I think Polly may be using the same product. I started on the Par brand of cholestyramine and after some internet research found that people preferred the Sandoz brand.