Big ol' vent and questions

[NikaNik]

Hi, gang!

My birthday - September 12 - marked five months off my Dificid taper. I am very grateful to have made it this far. But I thought, by now, I would be eating most things again and feeling way better.

I haven't been tested so far (my c diff specialist said not to unless I was having D 3 or more times a day that was persistent and, fortunately that hasn't happened). Lately, I average a BM once or twice a day but have some days where I go more often (stress and hormones seem to effect it). I have been eating the same bland foods. If I try to eat like I did before c diff it sometimes ends up with mush or D.

Hubby and I are wedding photographers and I basically have a panic attack every time we leave for a shoot (some weddings are 12-14 hours long). I LOOOOOVE my job. But I am terrified I will miss a moment at a wedding because of a bathroom trip. Hubby is amazing and supportive but cracked last week saying, "Maybe we should just sell all the equipment - I can't take the stress and seeing you like this anymore." I sobbed. I'll be damned if a stupid bacteria ruins my passion and our successful business. I am going to see a therapist for this.

Questions: When does the IBS improve? It seems c diff comes back every time folks take antibiotics so it just hangs out dormant in our gut forever? Does that also mean it can be low-grade and flare for no reason? I am already tiny (5'3 and 112 when c diff hit but ate a lot!) Now I'm hovering between 102-104. I am on two Ensure a day plus meals. Some days I just want to die to get rid of the bacteria since it seems nothing truly eradicates it. I am blessed in many ways. Things could be MUCH worse. Just frustrated as I've had a hell of a two years (lost half the blood in my body due to a large fibroid tumor and had 3 surgeries to get rid of it).

I'm only 36 and I feel like my free, happy, food-loving, guts-of-steel self is gone forever.

Thanks for anyone listening.

Nikki

[tonia]

Awe Nikki. I have no advice unfortunately, but I commiserate with you completely! I have had the same thoughts and feelings. It is amazing the impact that this bacteria can have on emotional and mental health. I too am seeking help for this problem, although I am afraid to take ANY meds now, so not sure what will help. I feel so deeply for everyone going through this. I wish we could all be like the very few people I have talked to who have not let this impact their lives. The thought I had this morning, that helped me ever so slightly was "live like you were dying". Whether c diff is in the equation or not, tomorrow is never promised. I have decided, if tomorrow doesnt come for me, I do not want my family to say I ever gave up. Will this still work for me tomorrow? Lol I honestly do not know, but I know I accomplished more today than I have been and I will deal with tomorrow when it comes. It is the best we can do with the hand we have been dealt. Its not fair, you can be angry, you can be scared, but life will go on whether we go on with it or not. The anxiety is a real bugger and I have yet to figure out a way to beat it. If you figure it out, share your secret. Until then, all we can do is keep on keepin on.

[ppp67]

Try to be positive. Don't be afraid to start eating good healthy foods again (as opposed to just bland).
It's been months -- that's really good news. You have to live again.
It sounds like CDIFF is not the problem now.
It sounds more like post-CDIFF recovery.
Mush and D? Yeah, I still have that too... don't sweat it.

With me, I was so afraid to go off the bland diet.
I'd eat a little something "non-bland" and it would feel wrong.
The next time I had it, it felt better. Just needed to add things back slowly.
It took time to recover from the damage done but that seems normal.
The fear is normal too.

Besides, now is an opportunity to try new foods too.
And exercise really helped me. It doesn't make sense but that is how I felt.
Biking and walking a bit seemed to trigger something, including my appetite.
Try to make changes for the better.
It can be really fun if you are willing.


PS: A wedding photographer sounds like a dream job.
Getting paid to go to wedding receptions all the time? Sound like fun.
Don't give that up.

[beth22]

I have been like you for a long time. My hope is that some of the new treatments that are coming out like SER 109 will re-populate our guts with good bacteria and help balance it out. Meanwhile, I was told to try EnteraGam, which is a medical food for IBS. Since I also have elevated lipase, I can try pancreatic enzymes, but I hesitate to do that because when I tried them before, I got bad heartburn. If you are having problems with IBS, ask your doctor about the EnteraGam.

[NikaNik]

Thanks, all! I try to live my life to the fullest. I work two jobs that I love and have an amazing hubby & family, wonderful friends. I go out and do things. The fear and IBS are annoying but I know it could be way worse. Just wondering when it gets better and I pray it does.

Tonia - I hear you on not wanting to take any medications! Same here. But I love that piece of advice to live like we are dying. That's the spirit! You are doing awesome! Love your words. Keep on marching, girl!

Ppp67 - Thank you for the tips! That's what I'm hearing from other people too - don't be afraid and just keep adding new foods and don't panic if there's a reaction because it seems to get better for most folks over time. And, yes, being a wedding photographer is a dream job. Hard work and challenging at times but I love it!

Beth - I hope so too - the SER-109 sounds so promising. I am so sorry you still have issues after this long. That is heartbreaking. I have been on Enteragam since late March (my c diff specialist prescribes it with treatment and to take for several months later). It is supposed to boost the immune system, heal the gut and is said to disable c diff toxins (if present). I do believe it helps!

[NanciT]

Nikki

I am out further than you and although I do seem to add new foods and do well, suddenly I will need to go back to that bland diet. For me it's Post IBS and it take time for everything to heal. I have read some on here do well right away, then there are others like myself that take time. It can all be very frustrating and you have every reason to feel that way, you have been through alot. Working through this while working is another issue. I also have to worry about the bathroom and how far way I am from it....makes me crazy at times!!!

You are on your WAY!!! Just know it takes time, we will have up's and down's but we WILL get there!!

Soon!!

Hope you are feeling a bit better!

[beth22]

They are starting trials to find drugs that work for IBS to disable the toxins. I don't know how far down the road it will be before they come out with them though.

[Dobies#1]

Oh Nikki! I'm so sorry you're struggling like this. I will tell you it's all NORMAL. I'm not only talking about the mush and D. I mean the emotions and fears you have. I was in therapy but honestly my therapist told me everything everybody says here, which is we don't know what's going to happen tomorrow, everybody's complete healing time is different, don't live in fear, etc. I hope I don't jinx myself here but I haven't had diarrhea or loose stool since over a month ago and I'm over two years out from C Diff. My point here is I had loose stool or diarrhea at least once a week and most of the time more than that until a little over a month ago. Don't let that worry you. All I'm saying is I too thought it was coming back at times the whole two years and it never did. Now, I still worry about needing antibiotics. We all do that. But the truth is anyone who has to take antibiotics has that chance of getting C Diff. Point being we all used to take them with no issues until the crappy time C Diff did happen. Also remember when you go so long without eating something your body will not be used to that food the first time you eat it again. When we went back to TX after being in NC for several months we ate some good ol' Texas BBQ, and thirty minutes later I was sprinting to the toilet! This was before I had C Diff too. So it was like a shock to my guts. LOL!! You are having a normal recovery. I eat what I want now. You too will get to the point when you'll think I'm going to eat this taco even if it gives me diarrhea later, but I'm not going to let that stop me and I'm going to enjoy every bite of it! That being said if we are traveling or away from home for awhile I try to eat safe foods because I hate having to poop in public restrooms. Also sometimes I'll eat something and I can tell right away that I shouldn't have eaten it, but sometimes it takes a day or two to upset my bowels. Also just FYI there are people with just plain old IBS and they can't even leave the house. I'm only telling you this to say it's not only is C Diff sufferers who have fears about what we eat. Stomach/bowel issues just suck because it's embarrassing and you have to be near a toilet! We all get it and we all experience the exact same thing's you do. We are all here for you! If you think you'll benefit from therapy then go for it, but for me it's best to just come here, because I know everyone here understands. My therapist tried to understand but she also told me that if I got C Diff again it wouldn't be the end of the world and they would just have to treat it again! This was a psychiatrist who worked closely with my Oncologist about my case too! I liked her but didn't like her comment! She's stopped counseling and wanted to refer me to someone else but I've honestly done better without going to therapy every week. Again this is just my experience and there are a lot of good therapists out there. You know you have our support here. Hang in there and I'll be praying for you. XOXOXO!!

[NikaNik]

Thank you, Steph! That's one of my biggest fears - becoming one of those people who gets debilitating IBS and I won't be able to leave home or work. I don't know what I would do if that happened!

I'm going back and forth about the therapy - coming here has been wonderful. Last night I said "screw it" and went to IHOP. Had plain scrambled eggs (which I have often with no issues), a hashbrown, a piece of toast and a few bites of plain pancakes with no syrup (I have waffles and syrup at home often with no issues). This morning woke up to half soft formed and half mush. I guess not so bad for eating it for the first time in recovery. Just frustrating. I love your attitude of just eating things anyway and getting your system used to it again. I truly hope and pray that happens as food was a HUGE part of my life (I married into a 100% Italian family so food is big here - plus in meeting with family and friends and client meetings. I miss it all so much).

As far as c diff - I took antibiotics several times in my life with no issues but as my c diff specialist explained I didn't have c diff in my gut back then. I most likely ingested it in the hospital last year so when I took an antibiotic months later - boom. There it was. I guess the hard part is not knowing if it is truly eradicated or not. But that's the case with a lot of things so I need to just suck it up haha. I am very careful about keeping my hands away from my mouth now - more than ever. Wish I was that careful before and I probably wouldn't have gotten the c diff. Oh well - no sense in wanting to go back in time.

Thanks again for sharing your story. You are so inspiring! May you be cancer free and c diff free forever. : )

[Dobies#1]

You won't get debilitating IBS. It's just going to take time for your system to recover. I probably swallowed the spore when I had my mastectomy and I was only there one night. You're still fairly early in recovery. Just hang in there dear!

[beth22]

I went to a psychiatrist a few years ago when I had a hard time dealing with c diff, relapses, etc. She told me that she thought I was doing very well under the circumstances and that when I got well, I would not be depressed. I think she called it situational depression. Anyway, she was not much help, so I stopped going after a while. That is not to say that people don't benefit from seeing someone. You could try it and see if it helps.

[Lisa33]

Nikki I think you know my feelings on the eating. I am one of those people whose feeling is eat it anyway and don't worry about how it comes out unless there is pain or D. If it's mush or semi-formed, I don't think that warrants not eating something you enjoy. I feel like my BM's are weird no matter what, so why not enjoy food. If you aren't experiencing pain, cramping or D from food, I think you should go for it. As others have said, your body has to adjust back to eating a non-bland diet. It may take a several times of eating new foods before it doesn't cause a weird BM. But then again, my experience in recovery is that a weird BM will be there regardless of what I eat. LOL

My opinion on therapy is that sometimes it helps and sometimes it doesn't. Sometimes you have to shop around for the right therapist that's the right fit for you as well. If you are experiencing anxiety that's debilitating and affecting living your day to day life, it may be worth trying therapy. As other have said, if it's not beneficial, you can always stop. But you may be able to learn tools that help with the anxiety.

Your doing great though. You are past the 5 month mark now, which is awesome. I think you have said good-bye to c-diff now. You need to enjoy your life without the constant worrying now. The one thing that I still have anxiety about is needing another antibiotic, which I think is the common fear among us all. So, I can totally understand your anxiety about that. But just live your life. Enjoy your jobs and start to enjoy food again. I truly think that you are ready for non-bland food again! :-)

[NikaNik]

Thank you, NanciT and Lisa, Beth and Steph. Sending you all a big hug of appreciation.

[justme]

Hi Nikki: I am so glad to hear you are past the 5 month mark. I agree that dealing with the emotional issues that occur with a chronic illness that takes a long recovery, can be debilitating. Since I hadn't been near a hospital for years, I know I must have ingested the spore in the hospital in L.A. in 2007 when I had a cardiac arrest at LAX. I was on life support with a tube down my throat so infection was very likely due to someone adjusting it. Recovery from the SCA (and a broken rib from the defibrillator) was duck soup compared to recovery from this evil bug. Now 2-1/2 years later, my body is finally normalizing. I've slowly added back different types of food and waited to see how my system would react. Now, I can pretty much eat everything but spicy food, but I don't overdue dairy and raw veggies (which took awhile to adjust to). You will eventually get used to eating differently and it won't bother you so much. Your type of business sounds like fun, but I can understand the anxiety about bathroom issues. What I've done is to always wear a pad when I can't be sure what I'll encounter. It sounds so old ladyish, but believe me it will alleviate the anxiety in that regard. I also sought help with anxiety issues that occur with a chronic illness and the one I went to helped me quite a lot. I am 71 and retired so I don't work, but I take on-line classes. Exercise is also helpful, even if it's just stretching and walking. Distraction has been the key for me in dealing with this and taking it one day at a time. Good luck and you can vent to us anytime.
Aloha,
Anne

[NikaNik]

Thank you, Anne! I appreciate your feedback and tips so very much. It's nice to know there is hope that in time I'll be able to eat "normally" again. Seems like whenever I try to find hopeful stories a lot of folks say that after c diff they were never the same again. Not so encouraging. I'm down to about 100 pounds now and I hate looking so thin. Really need to gain about 10-12 pounds back to get back where I was but it seems Ensure no longer agrees with me (had pretty much D a couple times in the last week after drinking it). May try Boost again since I was dong fine on that for months. My worst fear other than c diff again is getting IBS so bad that I become homebound or some such. No reason for me to think that but maybe I read too much! Still looking for a counselor in our town to help with this. I love to walk and get exercise while working (a 12-14 hour wedding day holding a camera/lenses etc. and barely having a moment to sit is quite a workout haha). Again, I'm so grateful for each day (don't want to seem like I am not since many folks have things far, far worse) Thanks again, everyone, for allowing me to talk about this stuff here. Big blessings to you all.