PI-IBS...HELP!!! :(

[jjglad]

Ok, so I have not taken a Vanco since 2/29! YEA! I have had numerous re-tests since then because I thought for sure I was having a relapse. Even had another PCR test on Monday and it is still negative. I have been two months without any meds for CDiff and have had a few days here and there where my system has given me a problem, but a dose of Pepto or a dose of Imodium usually cleared things right up for me for another few days. I have been avoiding dairy and cannot take Enteragam because of a beef sensitivity, but this week...UGH. This week I have had to take an Imodium each day to try and keep things calmed down, Today it has taken me a dose of Imodium AND Pepto to even get things to calm down somewhat. I just have so much gurgling, air, soft stools going on! I am so frustrated because I had a little cream cheese on a bagel this past weekend, but would that still causing me this much trouble several days later?!?

If you have dealt with the horrible "recovery" phase of this illness I would LOVE to hear from you. How long did you spend on this recovery - is it back or just IBS - roller coaster?? Could you please share what medicine or what treatment you think helped you the most to get over this very UNSTABLE recovery phase. I have lost 45 lbs. because of this beast and I have been making myself eat 3 meals again each day just to try and stop losing weight. and yes, they have been bland, easy foods. I don't know if my system just can't handle eating anymore and I mine as well quit and give up or what to do...needless to say I am beyond frustrated. Tests keep saying negative, but my system is obviously very upset and unstable these days. What normally worked on days like this is clearly not working this week. ;( I just do not know what to eat or do anymore! What was working for me for a while is not working anymore...

Help!
Signed one VERY upset and frustrated CDiff survivor

[georgina]

Jj
The only thing that truly helps with symptoms is time.As time goes by you will feel better.You have to be patient, post-ibs is no fun but better then active CDiff .I'm almost 6 months out from my FMT and I still have gurgling , softer stool and gas.To calm down my gut , when I am having a bad day I am using antispasmodics and diosmectite packages and antianxiety meds (lorazepam has muscle relaxant properties and calms down my gut).I also take a naturist treatment for HPylori (Mastic Gum and Goldenseal ) and I think they also helped my digestion.But in the end , time will be your best healer.Try to relax and think positive , you will get better!!

[Nancy1]

Primadophilus Reuteri gave me my appetite back, so I could stop losing weight. I had cdiff for 8 months. I would say that after 6 months I was past the worst of the recovery roller coaster.

[Acres]

I am still in recovery (about 50 days post dificid) I have good days and bad days - also urinary tract problems - an extra little gift from c.diff...Recently I climbed out of a bad case of depression (from the help on this site) So you are in the correct place.
There are some amazing people here....
My stools were all over the place for a while and my "urge to go" was awful. Then all of a sudden it stopped.... Then I became extremely stressed over my pelvic area problems and the loose stools and urge started again. The help from this site calmed me down and now things have improved again in my colon.
Have you tried a brat diet (bananas, rice, apple sauce and toast)
I am on a modified brat diet which includes all of the above and almond butter, eggs, rice cakes, wasa light rye crackers, chicken soup, lots of zucchini, spinach, quinoa, coconut bread, pita chips, small amount of pasta, pumpkin waffles, ground turkey and lemon cake (just added).
It's hard to stabilize your weight on a very limited diet. My nutritionist keeps telling me to stop looking at the scale and just continue to eat healthy foods and take vitamins.
I developed food intolerances from c.diff (oatmeal, most veggies, fiber, dairy). It has been trial and error to figure out what I can or cannot eat. I am unable eat about 70% of the food I used to enjoy. I am making progress, but it is very, very slow progress...

Are you taking any probiotics ? I take florastor and vsl3 everyday.

I have noticed stress wreaks havoc on my colon (and stools)....

I am sorry you are going through this - positive thoughts and prayers to you,
Scott

[jjglad]

I am still taking a probiotic called Primal Defense. It is what I have been using for the last couple months as all the others (florastor, etc) were adding to my issues. I may try one from health food store though from Udo's? Anyone tried that brand?

I am hungry most of the time...guess that is a good sign. Problem is, even eating bland is causing me issues these days. Just so frustrating to be hungry but have nothing to eat that doesn't bother you!!

Someone has mentioned Levsin on here before to me, need to ask about that one. I am not sure if that is in the antispasmodic med category. I have Bentyl, but after reading side effects I have not tried it. The thought of dizziness, lightheadedness, etc. does not appeal to me. A huge risk for a mom of 3! Not sure if any of the antispasm meds don't carry that side effect though?? Let me know if an antispasm or other med helped you in this IBS post-infection recovery phase. I need to try something to get thru my day better then I am. I feel like the world's worst mother and wife!

Ladies - any of you have worsening issues around monthly time? I have before, but not to this extent! :(

[tessa63]

J

Bentyl and Levsin are basically the same type of drug. I tried Bentyl and it does make you very sleepy. I took it at night during active C diff and I could barely get out of bed in the AM. Not everyone reacts the same but it may be worth trying once on a weekend. Do you ever see B? I know you had mentioned the docs prescribing Aprisio (not sure if spelled right) in the past because they were suspecting possibly IBD. PI-IBS is very hard for many but it sounds as if nothing has worked for you. Its a shame you can't try Enteragam as it would probably do the trick if this is all actually just PI-IBS. I know a colonoscopy would be out of the question, but I wonder if you should consider a sigmoidoscope just to make sure you are not missing anything. I am not a doctor and this is just my opinion. I do agree time helps heal and it does seem as if people who do the long Vanco tapers suffer with IBS so much. You should check back with the doc just in case to rule out other things.

T

[georgina]

Mebeverine is one antispasmodic that worked for me and it doesn't have those side effects like sleepiness or dizziness.

[jjglad]

Thank you! Oh gosh I hope it is not anything worse then rough recovery. No, I do not notice any B. And it is just this week that things have been tough to "manage". I have been on the roller coaster in recovery but it was not taking much Imodium or Pepto to turn things around for me. This week is also PMS week as well, so...???

If those of us who have done more then one Vanco taper/pulse have more trouble with IBS then that would make sense. I took a 10 day course of Vanco...relapsed, then did the long Vanco taper/pulse and then another relapse so it was another long taper/pulse of Vanco! So I spent almost over 4 1/2 months on Vanco!

I took a half of a Bentyl this AM to see how I do. Ease into things...
I will mention the other one that you sent and see what GI office says.

Thank you

[NanciT]

Hi JJ

You may want to check with your pharmacist on the Bentyl vs Hycosamine( Levsin). I have used Levsin for years and dry mouth was a side effect that is common. I was not able to take Bentyl or Librax, both made me dizzy. Everyone is different, if one does not work, check and see if you can try a very small dose. With Levsin, it comes in a small dose and can be cut in half.
NanciT

[jjglad]

Thank you all for the info! I appreciate your help and input. I tried a half dose in the AM and PM yesterday of Bentyl. Seemed to help the cramping which leads to RR visits. Just a lot of air from it. I will take that over having to run to a bathroom.

For those that have been thru this Post-Cdiff recovery roller coaster...when you have bad days, how long did they typically last? What did you do to turn things back around?

[jjglad]

Have tried the low dose of Bentyl the last two days, it did seem to help with calming things down. Today though...yellow stool?? I am so lost and confused as to what is wrong with me? I was doing OK there for a few weeks and now all of a sudden the last week has been bad and doesn't seem to be getting any better. :(

I cannot find anything to blame the Bentyl for causing the yellow stool. Clearly, the Bentyl helped keep it formed, but geez. When am I ever going to get a break?!? I was so hoping a google search would show proof that Bentyl was causing the change in color...but NOPE!

So hard to not panic that the infection is returning when you see yellow! Was mostly normal, but just the WRONG color?!? So confused anymore. No change in diet and have barely even eaten anything lately because I am just SO tired of RR issues!

[Ril]

One thing at a time...the more anxious you get, the worse IBS gets. That is a proven fact so try to keep as calm as possible even though easier said than done.
Levsin is definitely an antispasmodic and same as NanciT I have taken it for years. It does not make me drowsy or dizzy but I do get a dry mouth. I would not be afraid of it. Librax has Librium in it, which is a tranquilizer and might make you tired. I have taken that a very long time ago. It's not used very often anymore.
You might want to try several small meals, 4-5, throughout the day rather than 3 meals if you are having trouble eating and getting nauseous. I was nauseous off and on for a long time throughout recovery and couldn't eat big meals.
I also had many food intolerances so you have to figure out what bothers your system. I could not tolerate heavy fiber like raw veggies, many fruits, and sweets.
Since you can't take Enteragam you might want to ask your dr about Questran (cholestyramine). It is also helps firm up BMs using a different mechanism and is what used to be prescribed before there was Enteragam.
Just watch the yellow stool and don't panic. and there is a difference between bright yellow and kind of yellow. Check for other symptoms and hopefully they are not there.
Rita

[jjglad]

Thank you! I am rarely nauseous, hungry most if the day. Everything is going right through me for some reason. I don't feel good because I don't eat much and so still losing weight. Bentyl just makes me feel so weird, I can't take it anymore. Will try Viberzi when pharmacy gets it straighten out. Will ask for Levsin next...

[Bobbie]

Agree with Ril. We are in middle of moving - longest move on record - and IBS,Munich as been fine, has become much worse. We are buying new furniture, giving away and selling other things. Some problems with both houses. Have two very ill friends.

Have lived here since 1980 and raised both my sons here. Bittersweet.

Take me away, Calcon.

[amyc]

I would try colestipol tablets or questran powder. I prefer the tablets but I call them horse pills because they are a full gram, and you take 2 or 3 at a time. Benedryl will calm your gut but it knocks me out if I take it during the day. And cream cheese is something I will never eat again, as I cannot tolerate it at all. Sour cream is another no no for me. You could look up the low FODMAP diet to see if it helps you, but it's pretty restrictive. It might help stabilize things and then you could add foods back gradually to see what you can tolerate.