struggling with severe depression and PTSD

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U B Tough
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Date Joined Aug 2015
Total Posts : 904
   Posted 7/25/2017 6:56 AM (GMT -7)   
My bowel was doing so well until a few days ago....

have had a triple whammy since last Wed.....sudden, severe fistula flare - dealing with side effects of Stelara--- now in a weird flare (?) after having near perfect bowels for weeks.

Brought on panic attacks, PTSD and thoughts of ending things. Have spent the last few days sleeping, using MJ and lorasepam to get through. No appetite, not drinking.

Trying to tell myself that this is just a blip etc.....it's hard because it's too much suffering, dealing with these fistulas....

It's been a rough few days.....the fistula issue is traumatizing. I'm struggling so badly to cope, just when I thought things were getting better.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 7/25/2017 7:07 AM (GMT -7)   
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.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 7/25/2017 7:10 AM (GMT -7)   
Thanks NCOT-----I can't stop the tears today.

I'm now flaring as well. Thought Stelara was helping....
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Generally, feel like crap but somehow I'm still here.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10096
   Posted 7/25/2017 7:12 AM (GMT -7)   
Tears are good... :/

When is your next Stelara infusion?
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 7/25/2017 7:29 AM (GMT -7)   
8 weeks. Just had my 2nd last Wed. Bowels were awesome....nearing remission. Then Sat night wham.

I'll have a go for Ivig next week & hope that helps.
I'm so tired.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Generally, feel like crap but somehow I'm still here.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1831
   Posted 7/25/2017 10:27 AM (GMT -7)   
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))).
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 885
   Posted 7/25/2017 1:19 PM (GMT -7)   
What are your side effects? I have had 3 doses so far and im going throufh the same thing right now. Anxiety and depression through the roof.

Barbz
Veteran Member


Date Joined Jun 2005
Total Posts : 885
   Posted 7/25/2017 1:21 PM (GMT -7)   
UB Tough if you want to add me on fb to message my fb name is Barb Alexander Howard. It will grt better

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 7/25/2017 7:52 PM (GMT -7)   
UB I am so sorry to hear you're having flare symptoms again. What is your situation? I think I remember--do you have the j-pouch? And you had issues with the ostomy (necrotizing...?) so that's why you don't want to go back to the ostomy? You know that's my plan if Stelara fails--to have the permanent ileostomy. It's not ideal I relish the thought of being off being well again and wish the same for you. *hugs* to you
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 7/26/2017 2:52 AM (GMT -7)   
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
Veteran Member


Date Joined Jun 2005
Total Posts : 885
   Posted 7/26/2017 5:45 AM (GMT -7)   
What is AMAT?

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 7/26/2017 6:54 AM (GMT -7)   
Barbz said...
What is AMAT?


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

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3534
   Posted 7/29/2017 5:20 PM (GMT -7)   
Hi I'm flaring too and I've been on Stelara since march, it's very sad at times!! I'm rotating my own antibiotics, cipro, flagyl, rafaximin. I have a scope in two months, I'm scared because I have flared for 12 YEARS straight!! I'm going to try that Chinese herb people are talking about on the UC forum. What about trying that? I hope today was a better day!!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara and love it!!Took rafaximin for SIBO, worked awesome!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 7/30/2017 7:40 AM (GMT -7)   
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?
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 7/30/2017 9:20 AM (GMT -7)   
UB, I'm so sorry you are going through all of this. I wish I had more advice other than just to hold on tight to the good experiences you've had over the last few months. That's the only way I was able to get through really bad times. Fistulas are definitely pure evil. I had it for 3 years of misery and hell and despite all the doctors telling me it healed, one slight pain will cause me to think It might be back. Keep fighting. Is there any chance you might benefit from going to the US to Mayo Clinic for treatment or is that an out of the question expense/travel.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 904
   Posted 7/31/2017 9:46 AM (GMT -7)   
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?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 999
   Posted 8/2/2017 8:18 AM (GMT -7)   
Yes, I rethought that after posting. It's hard to find ones that will invest in trying nonstandard treatments. They definitely would not have done hyperbaric treatment here, I was looking everywhere to find someplace willing to experiment with that and it was basically only wellness spas that were doing it for exorbitant amounts of money but not to the pressure needed for actual therapy. haha! I have had that thought about selling it too! Even organ donations, no one would want these! I was exceptionally lucky that the humira eventually healed it.

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 8/2/2017 4:12 PM (GMT -7)   
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

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 357
   Posted 8/5/2017 9:01 PM (GMT -7)   
Hey UB, how did the doc appointment go on Friday? How are you feeling?

Clo--read your story about your niece and that is funny! Kids are the best.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 723
   Posted 8/6/2017 11:51 AM (GMT -7)   
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
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 330
   Posted 8/25/2017 10:08 PM (GMT -7)   
Hi -
Just offering my support and saying hi. My situation is different (and my info is out of date below - i'll fix it) but I understand how dispiriting it is to flare - I get the PTSD element. And the idea that it's hard to move forward.

I agree with the advice of so many experienced people here. Like NCOT. sometimes when something new or upsetting happens, I spend alot of time on this forum and the internet just learning about it. I think it does at least three things:

1) Gives you something to besides worry and cry
2) Might introduce new ideas or treatments - or good questions for md visit. Being informed is never a bad idea.
3) Seems to help you habituate to the idea ..."oh, fistula - no big deal" or text "Oh, here's another person whose flared one billion times and she seems great" - and slowly helps to create a "new normal"

A good cry is nothing to avoid - a great strategy too.

Hugs.
Official dx in TI 2007 with with obstruction and 10 day hospitalization.
Mild to moderate since then - frequent colitis
2014 - rectocele repair, also bladder sling and endometrial ablation
2016 - exploratory surgery for possible fistula - sigmoid colon
Current Meds: Asacol. B12 shots (Formerly Pentasa, 6mp, Cipro, Prednisone)
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