Scared of relapse

[JuliaV]

Hi everybody,

HOpe it's ok to vent a little. Have been "C dif infection" free for a month now, after having a fecal transplant. So happy but still struggling with other serious health issues which I have had for over 20 years now. Anyway, a group I belong to near where I live, there are just some issues with the leader of the group and I very respectfully voiced my concerns and now I feel I am being misunderstood and I am very upset. Sorry to be so vague but I am having some severe anxiety today and having some "D" the past 2 days and so scared of a relapse. I have been trying so hard to eat healthy ( i know you guys can relate). Preparing all this healthy food is very time consuming. I try to eat preservative free, dairy free, and only animal products from free range, raised without antibiotics. This local group is/was my only support and I hope the issues can be resolved. I am unable to move and live in a rural area, due to financial reasons. Despite being C dif free, I am in severe pain and have explored the full range of alternative and traditional remedies. Most of the prescription meds for pain slow intestinal motility and may possibly contribute to flora imbalance and possibly C. Dif. Have seen multiple providers, no good solutions. My cognitive functioning is suffering due to the pain and sometimes cannot be articulate the way I want to and then I just feel stupid. And it makes me think other people think I'm stupid.. I've been sick for so long. It's just too much sometimes. Well, thank you for listening. You guys are great. Julia V.

[beth22]

I can totally relate to what you are saying, Julia. I feel ready to give up sometimes, like today. I start to feel a little better and then back come my symptoms. Just is so discouraging. BUT, tomorrow is another day. Hopefully it will be a better one.

[Bobbie]

Julia,
This is what the intent of this forum - to vent so whenever you want to do so "vent away."

What most people don't realize (those who are "healthy") is that sometimes chronic bad health can overshadow everything else. We just feel so rotten it "spills over" into things we do with others - and they don't understand - unless they have similar problems.

Can you have a conversation with the leader of this group? You didn't say if the group involved illness. Is there a way you can email or otherwise contact everyone and explain they mean a lot to you and you need their support.

I've been ill a long time too - l9 years since my first bout with C. diff. One thing that has helped me immensely is aerobics. Do check with your doctor first, however. Stretching, walking, anything you can do can help you take your mind off your problems -but it takes practice.

I try not to talk about health problems with my "healthy friends" but they are now the age they are developing problems so now it is more interesting - to them, We are all "me" oriented so the people on this site (especially the long-term sufferers) will know more "where you are coming from."

I'm glad the transplant worked and maybe now you will slowly start to feel better and get some of the other problems resolved.

Remember, you can always vent here. Let us know how it goes with your group. Groups of people (and groups of animals) can be difficult to deal with as they tend to "take sides." I think I'd chose the most empathetic person in the group and ask her advice.

Any one else have any suggestions?

[JoElizabeth]

I think the e-mail suggestion is a good one. Sometimes it's easier to put feelings down in writing than to talk about them in a group, especially when there's tension involved.

Can you perhaps send an e-mail to the group members, explaining the situation or exactly how you are feeling?


jo

[JoElizabeth]

By the way, Julia..you are definitely not alone in your fear of relapse or your anxiety/ depression. C.diff is such an unpredictable disease that it has us always wondering if every symptom is a relapse. Like you and most others here, I am just taking it one day at a time, literally. It's all we can do.

Chances are that you will know if you relapse...you will feel sick and get sicker as time goes on. I've felt that I was relapsing several times over the last 6 months, but each time was just either a bad day or anxiety or IBS or who-knows-what?

Good luck to you and keep on venting whenever you need to. We are all here to help you through this.


jo

[KateC]

Julia,
I just want to reinforce that you are nOT alone !!
The hardest thing baout chronic or unpredictable illness is feeling alone & like
no one understands what you are feeling.
Come in here when it it overwhelming- just read through posts if you don't feel like typing,
& in a little while after reading a bit you will relaize you aren't alone.
I do this alot !!!
Having a pity party myself today & came in to vent which I will do next!

I can also relate to what you say about not being able to express yourself intelligently... this is happening to me alot
& it is scary.... I want to believe it is just too much for the brain to deal wiht but of course I am worried about
other things setting in since I turned 60 - it's freaking me out !
I do find I can type more inteligently than I can speak... but I make alot of typos as I'm sure you all have noticed -- also freaky..
I would suggest typping out everything you would like to say to this person in your group.
If you like what you wrote and feel good about how you expressed it- send via email or print out & hand deliver, snail mail, whatever.
But even if you decide not to give it to this person it will still be healthy for you to type it all out.

Please realize you aren't alone- hugs coming your way right now ((((hugs)))
I just told my son today that wiht my other health problems I have never relaly had the desire for an in person support group.
And my other problems are pretty nasty & scary as well.
But today if there was a local c diff support group I would bethere tomorrow.
This group is wonderful & I appreciate it more thn I can put into words, but I suddenly wish I could sit in a room with others
combating this beast. I don't know anyone personally who has had tis recurrent nightmare- only my Dad who had it before he passed away.
It was this long drawn out thing.

Hang in htere & visit here more often-- we're all we've got ! And it is such a great place wher eyou will not be judged.
Now... everone watch out-- I'm going to post "my" vent..lol
KateC

[Kathy George]

Julia, First of all, you are not stupid; you simply voiced your opinion. Some individuals just can’t accept constructive criticism, but that their problem, not yours. Most likely, this individual has a huge ego or just plain lack of self-esteem. That’s usually the case when individuals are not open to suggestions. Continue to attend these meetings as you have in the past. I would continue to intermingle with all members of this group. You set the positive example and that should set the stage for normalcy within this specific group. Lastly, the “D” is probably due to IBS. I experience the same symptoms when I become overly stressed. Good luck and KEEP THAT CHIN UP!!!!
kATHY

[AThurston]

I agree with Kathy... The D probably is from stress/anxiety. I recently was diaganosed with PI IBS and when I get upset D, nausea, abd pain all start. Come hang out with us on the site, vent or pm, we are all here for you.. Things like this usually blow over and calm down in a week, so go to support and mingle with those that are supportive. Best of Luck....

[JuliaV]

Thank you guys all SOOOOOO much for the support and suggestions. I feel better today and no "D". I have been exercising a bit and am gradually trying to increase it. I am partially homebound and bedridden so it is rough. But I'm trying. I did have a conversation with the group leader but she just doesn't get where I'm coming from. It is probably partially my fault, as I was so upset yesterday I did not explain my point of view to her very well. I think I am mourning the loss of my brain, to some extent. The other illness I have makes my thinking very muddy, and the C dif made it even worse! But anyway, the group I belong to is not an illness support group. Because I am quite incapacitated but don't LOOK it, I am forced to inform group members a little about that I am ill, or they would expect me to take on a lot more responsibilities. I am considering sending a group email explaining my point of view, however, this is a new group, and a bit fragile, and I do not want to "fan the flames." I wouldn't word it like that, I would just explain where I was coming from, however, well, it's complicated. But thanks again for all the support, you guys are the greatest. It's like having instant friends and I am trying to post some support for others when I can. It was so helpful to vent yesterday!!!!! Thanks.

[getwellsoon]

Julia, We are always here for you and each other. This is the greatest group. I too suffer from pain (lower back, sciatic etc. DDD) issues and take pain meds regularly. GI said the NSAids a no no so I'm off of those and my pain has increased. My PCP had told me I could take them for the colon pain I had with CDiff but I guess he didn't realize its not good. Anyway, now I'm battling nausea and some stomach issues and have to take Pepcid or Zantac, which isn't good either. Its tough to be fighting numerous issues but this relapsing CDiff is the worst. Anyway, just wanted to say rant away and we can take it. Prayers for you to feel better. Carol

[Kathy George]

Word of Warning: It’s not advisable to take Nsaids for long term use. This can lead to Chronic Kidney Disease. This is how my husband develop CKD after many years of back problems, excruciating pain and excessive use of Ibuprofen. CKD is non-reversible, so be cautious if considering taking Nsaids on a daily basis.
Kathy

[JuliaV]

Thanks everyone, for your support. I've been unable to get online for about 5 days, but it's good to be back and see how everyone is doing. Not sure how I will be able to get off the ibuprofen I'm on...only on 400mg per day. Stopped another pain med (doxepin) immediately post transplant b/c I was able, and it had been causing a ton of weight gain and had been slowing intestinal motility. But now I'm in major pain. I'm pretty sure if I stop the ibuprofen I won't sleep at all due to pain. Already doing lots of holistic stuff: yoga, light exercise, anti inflammatory foods, heating pads, ultrasound, tempur pedic mattress. But it is always good to get more information, and I appreciate it. Isn't it amazing, we have all these "pain meds" available to us, but they have all these bad effects. I think they should stop calling them "side effects" and just calls the "effects" b/c they sure aren't off to the side, like some slight itch on one's nose that lasts for 2 seconds....

[getwellsoon]

Julia, can you take Tylenol? I take Vicoden for chronic pain and it helps but with inflammation Advil is the best. I guess ask the Dr. whats the next best thing you can take for anti inflammatory action. I had to stop my Advil also. I was like you taking only 400mg. which is 2 pills a day sometimes 4 but the GI took me off of it. I think since I am 2 weeks past my colonscopy I can take it again but I'm scared to now. Hope your pain improves and you can find something to take to help. I know how bad chronic pain is. Hang in there and I'm keeping you in my prayers. Carol

[AThurston]

Julia, I would ask my PCP what you can take for relief, there is alot of cremes and patches one can use for chronic back pain, doubt that over the counter is going to help, but your PCP could order something via Rx. Sounds like you are doing alot on your own and not getting relief, time for you to get some relief. I hope that you can soon... take care, keep us posted.

[beth22]

My mom had a patch of some sort when she had a hip replacement and it helped her. It also is easier on our stomach. I would ask the doctor if you have more options. I don't do well with pain meds at all and they upset my GI tract as well. Maybe a patch would be easier. I will look up in my mom's old records and see if I can find the name of what the stuff was.