struggling with severe depression and PTSD

I'm sorry UB. I dunno what to say really :/

Sometimes things just cascade. I wish I could help with the fistulas, but I just dunno what to suggest - I'm really sorry. All I can suggest at this rate is combing through the old threads and reading every post on fistulas that you can find. Somebody at some point must have had the same problems with fistulas as you. Particularly as they are so common in Crohn's.

Tears are good... :/

When is your next Stelara infusion?

I don't know what else to say but hang in there you will get through this. We all go through times like this with this crappy disease. Honestly, I think my RV fistula is one of the worst things about having crohns. I can deal with alot but passing gas from there without having any control is not on my "able to cope with list".
Sending you lots of good thoughts and (((hugs))).

UB Tough if you want to add me on fb to message my fb name is Barb Alexander Howard. It will grt better

Thank you all. It's just rough, so rough and not having any medical support on how to deal with the daily symptoms is really tough. I'm in a constant cycle of abscessing. It's been a bit easier to handle over the last couple of months especially with almost normal bowels. But I tell you, this last week has been utter hell. I don't know what happened. Was fine, then reaction to Stelara infusion, then almost simultaniously a brutal peri-anal abscess attack, and now flare. Still dealing with side effects of Stelara. I almost had a break down and am very fragile. I know this. I just don't know how it's ever going to get better. It's like I'm being re-tramatized every time.

The RVF is really bugging me. I have no stool coming through (thankfully). But I can feel it. Or it's the irritation of the vulvodynia. I spent yesterday holding myself.

There are so many pressing things to worry about. When it was "just UC" I was only dealing with d, but fistulas are evil. Pain, drainage, abscessing, pads not to mention no tampons or diva cup.....then I worry my PG will flare. I'm overwhelmed.

However, over the past 3 months I've experienced some good things. The normal bm's helped tremendously. i rationalized everything , that as long as bm's were good, the fistulas would heal and I didn't need an ostomy. I caught up on things at home, went out, planned dates, gardened, walked my dog etc etc. (I even wore white jeans!!) All this while going through withdrawal from oxy. I'm proud of myself for that.

But I'm very tired with limited coping mechanisms and physical support. I'm clearly burnt out and coping with a flare adds to it. (If this is a flare....has certain elements of one).



Barbz---this was my second dose and as noted above it's been crazy and instantaneous happenings. Severe itching, nausea and now headache. (It's been a week). And the fistula issue....

Plucky---I don't have a pouch or ostomy. The CRS wanted me to exhaust all medical options first as my risk of PG is high. I'm also terrified and don't want one. IF that's the case (at least for now) I have to deal with this. Maybe this is just a set back for some strange reason. You're braver than me, although I've certainly done more research, thinking etc. on it. Just not there.....yet.

How long are you giving Stelara?

If Stelara fails I'll have to try AMAT as I've tested positive to MAP twice and can't ignore that may be my way out of this disease.

Thank you all.....I mean it.

PS. the only thing that really helped my RVF was hyperbaric oxygen. I may try and go back to that.

Post Edited (U B Tough) : 7/26/2017 7:01:31 AM (GMT-6)

Barbz said...
What is AMAT?

Atypical Mycobacteria Antibiotic Therapy ---a triple abx combo to eradicate the MAP bacteria which is thought to cause CD.

U B Tough said...
Thank you all. It's just rough, so rough and not having any medical support on how to deal with the daily symptoms is really tough. I'm in a constant cycle of abscessing. It's been a bit easier to handle over the last couple of months especially with almost normal bowels. But I tell you, this last week has been utter hell. I don't know what happened. Was fine, then reaction to Stelara infusion, then almost simultaniously a brutal peri-anal abscess attack, and now flare. Still dealing with side effects of Stelara. I almost had a break down and am very fragile. I know this. I just don't know how it's ever going to get better. It's like I'm being re-tramatized every time.

The RVF is really bugging me. I have no stool coming through (thankfully). But I can feel it. Or it's the irritation of the vulvodynia. I spent yesterday holding myself.

There are so many pressing things to worry about. When it was "just UC" I was only dealing with d, but fistulas are evil. Pain, drainage, abscessing, pads not to mention no tampons or diva cup.....then I worry my PG will flare. I'm overwhelmed.

However, over the past 3 months I've experienced some good things. The normal bm's helped tremendously. i rationalized everything , that as long as bm's were good, the fistulas would heal and I didn't need an ostomy. I caught up on things at home, went out, planned dates, gardened, walked my dog etc etc. (I even wore white jeans!!) All this while going through withdrawal from oxy. I'm proud of myself for that.

But I'm very tired with limited coping mechanisms and physical support. I'm clearly burnt out and coping with a flare adds to it. (If this is a flare....has certain elements of one).



Barbz---this was my second dose and as noted above it's been crazy and instantaneous happenings. Severe itching, nausea and now headache. (It's been a week). And the fistula issue....

Plucky---I don't have a pouch or ostomy. The CRS wanted me to exhaust all medical options first as my risk of PG is high. I'm also terrified and don't want one. IF that's the case (at least for now) I have to deal with this. Maybe this is just a set back for some strange reason. You're braver than me, although I've certainly done more research, thinking etc. on it. Just not there.....yet.

How long are you giving Stelara?

If Stelara fails I'll have to try AMAT as I've tested positive to MAP twice and can't ignore that may be my way out of this disease.

Thank you all.....I mean it.

PS. the only thing that really helped my RVF was hyperbaric oxygen. I may try and go back to that.

Oh UB, I'm not braver than you! I'm just ready to be done with the flare and the meds. I don't have a time frame for Stelara, but basically my msin objective is to wean off prednisone without flaring--I'm currently "steroid dependent". If I can't wean off the prednisone with Stelara then I'm done and I'd like the surgery ASAP at that point.
But so far, so good--I'm down to 27.5 mg pred and intend to drop to 25 mg tomorrow.
Riddle me this: I've had my perirectal fistula since February but just a few days ago it started itching--what does that mean? I have no other symptoms, no fever, etc. Do you think maybe it's healing? Or is it something bad?

TAM---12 years is brutal. How many times are you going? Have you been tested for MAP? If antibiotics help you then maybe the MAP regimine would help. Funny you mention that Chinese herb; I was looking for posts on it earlier this week but I can't find the name. Any ideas?

Plucky--- I don't have faith that an ostomy would work for me but I'm also not mentally strong enough for it. This disease continues to ravage me and I really see no way out. It's amazing how easily triggered my PTSD/depression is especially now that I'm flaring again.

My fistula(s) haven't drained in 3 days so I'm dealing with that pressure pain again until it bursts. Chiropractic is helping with that pain but I'm not risking an accident to get there. Just have to keep squeezing my butt cheeks. I'm seeing my CRS on Friday to ask about the LIFT surgery. As far as your itchiness....I'm in a constant chronic abscess issue so it's hard for me to say. I had some fistula itching in the beginning but now it's more burning when the fistula is about to drain. You could swipe some tea tree oil on it and see if that helps.

I had a terrible time with prednisone. I became adrenal deficient. I was on pred for 4 years straight. Then finally I'd had enough and got myself off it. It caused terrible depression and suicidal thoughts so I can't and haven't touched it since; even when going 40 times a day.

Lab---I appreciate your response. I know you've had it rough as well. I'm not sure if Mayo would help. They likely wouldn't have given me IVIG or hyperbaric oxygen. In many ways I've been been fortunate to have doctors in Toronto willing to try experimental things...but I keep failing or have limited success. I did find a clinic in LA that exclusively does LIFTS/FLAPS for CD patients. If all else fails I'll have to find a way to get there. Unfortunately, I don't think selling my body will amount to much!! LOL! How did your fistulas heal?

UB ,

How did I miss this? I saw it and thought holy crap I have lost it...... I always lurk around watching for you. (Boy that sounds creepy. ...but hopefully you know what I mean)

I have not seen my colorectal surgeon yet. That is next week. As soon as I get any info I will forward it to you.

Hang in there. I know it is difficult and there are times when you just want everything to be better...and since they aren't you get depressed....and then you have that little bit of hope by things feeling better..and then you get slammed. Your body is fighting back. Its telling you that it is trying.....so just hang in there. Concentrate on the next minute or second until you can go higher than that. Baby steps.

It took me at least 6 months of back an forths with Remicade. I still have some times when I feel like I am sliding off the edge. The fistulas will do that to you. I think that by being consistent in your cleaning of them...even when you feel like you dont feel like it...well that seemed to help me. The RVF....well its still giving me issues but the others are closed now. (But I still freak out when I feel anything different around them even now) I did have one little break out of those little bubble like skin lesions....they broke open and the hydrogen peroxide and tea tree oil are clearing them up. I look at it in smaller time increments to help me get thru.

Ok....funny story... Had a family vacation with my inlaws. They have a 4 year old. They wanted to prepare her for my Ostomy making noises and not jumping on my tummy area. They explained I have a "special place" on my tummy that makes funny noises and you have to be careful of. So we went out and my stoma made noises. My niece said in her clear sweet voice....Dont worry thats just the special thing my aunt has in her pants. You have to be nice and then maybe it'll settle down.... I had to tell the tables next to me it was my Ostomy....but the good thing is people got educated about Crohns and Osomies all at one time and I didn't have a stroke from being so very embarrassed.

So here's to hoping everything settles down for both of us.

Clo

Hang in there UB. You can do this.

Clo

UB,

Wondering how you are doing....

Plucky,

I love kids. I was just trying to lighten someone's day. I am glad it made you smile!

Clo