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05-11-2015, 08:37 AM   #121
scottsma
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I know what you mean.......thing is,when I stop using them (occasionaly) I have a mini flare.Gastro told me just last week,that I could reduce them if I felt like it,so I stopped,and I've been quite poorly this morning.It'll pass I know,but we're between a rock and a hard place at times.It's just finding the right balance.
05-11-2015, 01:50 PM   #122
Cross-stitch gal
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Sorry to just step into this conversation and sorry to hear that the supps don't seem to be working for you. I sure hope something will work for you soon. They've worked well for me and in fact, I've gone a few months without them. Just within the last few days I've started them up again though since I seem to be flaring quite regularly from the stress at work. No matter what, I keep my meds on here the same for times like these.
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Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

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05-11-2015, 04:20 PM   #123
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Thanks Cross-stitch gal,

I'm waiting to hear back from the IBD nurse now, so I'll see what the outcome of that is. Fingers crossed because this morning was the worst I've had in a while, with about seven urgent trips to the loo before lunchtime.
06-07-2015, 09:21 PM   #124
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I have several questions for all of you regarding my daughter. As you all know Ulcerative Proctitis needs its own set of medications and may not respond to some traditional IBD meds.

daughter 16 tried everything from the bottom of the list to the top to no remission.
We tried homeopath for a bit but her Proctitis flared so bad she needed a couple transfusions.

She responds best to Prednisone: of course.

so to wean her off, she takes her Pentesa (oral), some cortifoam and can not seem to get on a good rhythm with the mesalamine enemas: it has been 2 years of trying and she can not tolerate enemas with the slightest flare..
first question 1. would the suppositories work better?

2. how much of the mesalmine enema does she need to use?

3. Have any of you used a laxative stimulant? daughters BM's are plenty soft but her body retains the BM's and then she takes a laxative and the cycle never ends. It feels like the right kind of stimulant would work but nothing that causes spasms....... if that is even possible.

4. A homeopath suggested LDN. Have any of you tried it with Ulcerative Proctitis? I pray that this may be a drug that could help her and all of you.

You all have an area of Ulcerative Colitis that seems to stump the doctors. They want to stick to the typical list of meds and they dont work in this area.

thanks for any info. I am my daughters advocate. she is slowly taking the wheel but not yet. I hope she is able to find all of you one day soon. I pray more that there is a cure for your disease.

thank you all so much for sharing. My heart goes out to all of you. My daughters has been at home since january of 2012, but we are NOT giving up.
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
06-08-2015, 02:44 AM   #125
Cross-stitch gal
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1. would the suppositories work better?
-I don't know about the suppositories being better. For awhile the enemas did work for me. But, when I was really sick I needed something more.

2. how much of the mesalamine enema does she need to use?
-When you use enemas, you'll need to use every little bit you can get out of that bottle. Sometimes it's hard, just do your best.

3. Have any of you used a laxative stimulant? daughters BM's are plenty soft but her body retains the BM's and then she takes a laxative and the cycle never ends. It feels like the right kind of stimulant would work but nothing that causes spasms....... if that is even possible.
-I would probably consult her doctor before using any laxatives. Only time I really use those is when I'm preparing for a procedure/test.

4. A homeopath suggested LDN. Have any of you tried it with Ulcerative Proctitis? I pray that this may be a drug that could help her and all of you.
-I have not. Again, I'd suggest consulting her doctor about this. I had one who wanted me to use it. But, my current one would rather I not be on it. So, I'd kinda do my research before trying different medications.

I sure hope something will work for your daughter and that she too will come talk with us. I know that most of what I do is trial and error. But, once I find something that works for the time being I'll stick with it. Meanwhile, we're here for ya.
06-08-2015, 03:22 AM   #126
scottsma
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I'm so sorry to hear about your daughters struggle.
I was dx'd with proctitis in 2006 and I've used Asacol 500mg suppositories since then.I use 3 per day while flaring,and only 1 per day to keep me in remission.I have a flare every few months,but I'm very lucky that increasing the supps.is usually enough to get it under control.I have been on Prednislone,which worked well,but I would prefer not to use them to often or for to long.I hope your daughter finds something that works for her very soon.
06-14-2015, 04:42 PM   #127
Cross-stitch gal
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Well...I'm officially in a flare! It's all from the stress at work. Husband and I are going in to talk with my store director this week on our days off. We're hoping the nonsense can stop there so we don't have to go to the next step. In the meantime, the bathrooms are starting to see a bit more of me.

Last edited by Cross-stitch gal; 06-15-2015 at 01:37 AM.
07-12-2015, 12:57 PM   #128
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Is it more common for those with Crohns proctitis to be constipated? It is not the normal constipation with a hard stool but the type where your body bloats and holds on to it for too long.

Update: my daughters (age 16) inflammation has subsided with the use of mesalamine enemas as she is down to 1/2 tablet of prednisone. She also continues her oral Pentesa. This is the first time since she was diagnosed that she did not have rectal inflammation.

We are now focusing on the bloating. The tea she uses has Senna but she needed an extra laxative last night. We believe it is a key to her well being to get this part of her body more regulated. She does exercise during the day but I notice she still doesnt want to leave the house until this is under control.

Any advice on something that worked for any of you would be so helpful..
thank you
07-12-2015, 01:46 PM   #129
Cross-stitch gal
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I looked at two different websites and it looks like proctitis either way is pretty much the same. Here is one of the websites I've been looking at.

http://my.clevelandclinic.org/health.../hic_Proctitis

Glad to hear your daughter doesn't have any rectal inflammation! Hopefully now that you've got one in control the other will go down soon too!! Take care!
07-12-2015, 03:13 PM   #130
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Ds has rectal inflammation ( proctitis ) with his crohns
He causes reoccurring rectal prolapse and constipation ( leads to nausea belly pain etc..)
In his case on top of meds humira/Mtx /miralax we also switched his diet .
His rectal issues have gotten significantly better
He still get minor constipation ( needs miralax daily ) but the burning temasus prolapse belly pain area thing of the past
Granted the diet is a pain to do but has helped a lot .

Thread on what etc if your interested

http://www.crohnsforum.com/showthread.php?t=71686
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08-23-2015, 03:56 AM   #131
Cross-stitch gal
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I hope no news is good news and hope all is well with you all. I've been busy lately with work and haven't been on here much. But, am still around and available if you need to talk...
10-12-2015, 04:45 AM   #132
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Been pretty quiet on here. How's everyone doing? Been a bit busy here at my house, but for the most part my husband and I are hanging in here...
10-12-2015, 08:00 AM   #133
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Have recovered fully from my Gallbladder OP.Apparently all was well and they didn't need to take it out.BUT,they did seen something unusual on the scan,and as they can't test it in-situe,it had to come out.I'm watching my diet,BUT,having to watch it for 3 different reasons,is one big pain.Pre-diabetes being no.3........I mostly feel OK,but on the other hand I have some really bad times.Mostly mornings.But I'm a LOT better than some people,so I try not to complain.Best wishes to all,and I hope today's a good day for you.And tomorrow too.x
11-20-2015, 05:14 AM   #134
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Are you doing any better scottsma? I hope all's well with everyone else too...
11-20-2015, 10:37 AM   #135
scottsma
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Thankyou for asking.I don't think the absence of G.B. has made much difference to tell the truth.I'm careful with diet but not obsessive.
BUT...where as in the past I was plagued with D.,and urgency mostly, then C.
occassionaly,now it's alternating on a daily basis.It's not my diet I'm sure.

So one day I take loparimide (no more than 3 ) just to be able to leave the house,then I have to take Fybogel or stool softeners,to get going again.sigh !!!

I bet you're sorry you asked eh ?

I've got nothing to complain about really,but you did ask .

I hope you are keeping well,especially as the festive season's getting near.

All the best to you all.
11-20-2015, 05:47 PM   #136
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Sorry to hear you're still not feeling that great. Don't worry, takes a bit to gross me out or be sorry I asked.

I'm going back and forth having blood or not. This is the time of year things get really stressful at work as it is. But, this year it doesn't help with my manager. I've got a couple of threads going if you're interested in more info.

I'm hoping everyone here is less stressed than me.
11-21-2015, 07:44 AM   #137
scottsma
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I do try to keep up with your other posts.I don't know how you manage the stress at work
and every thing else life throws at us.
Having said that,I'm very fortunate with my life and don't have any stress.(retired)
At least you'll get a break at Christmas (?).Chin up.
11-21-2015, 02:14 PM   #138
Cross-stitch gal
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Nope, no break at Christmas. November and December are blackouts as far as time off goes. Reason being, it's the busiest time for retail. But, things cool off in January (so to speak) so that's when the seasonal hires are let go and business drops down way low.
11-22-2015, 06:24 AM   #139
scottsma
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Nope, no break at Christmas. November and December are blackouts as far as time off goes. Reason being, it's the busiest time for retail. But, things cool off in January (so to speak) so that's when the seasonal hires are let go and business drops down way low.
Ah,that's a real shame.Everybody needs a break.Christmas is getting far to
chaotic.There's to much stress at what's supposed to be an enjoyable and peaceful time. Not good for crohnies at all.Including all the festive food and drink we're supposed to stuff in.
11-26-2015, 07:54 AM   #140
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I'm so sorry to hear about your daughters struggle.
I was dx'd with proctitis in 2006 and I've used Asacol 500mg suppositories since then.I use 3 per day while flaring,and only 1 per day to keep me in remission.I have a flare every few months,but I'm very lucky that increasing the supps.is usually enough to get it under control.I have been on Prednislone,which worked well,but I would prefer not to use them to often or for to long.I hope your daughter finds something that works for her very soon.
have you tried the 1 g suppositories/day to maintain your remission? maybe this would help better to keep and maintain remission and not flare every few months? Im really an advocate for strong remission and avoidance of multiple flares, throughout the years.
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pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-26-2015, 08:05 AM   #141
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@Hope345: I have used both enemas and suppositories. Enemas are litteraly a pain in the butt for me to use. Complicated to insert and discomforting to retain. It was a stresfull moment just before going to bed: I didnt like it at all.

I feel in harmony with suppositaries even if a little annoying to insert before going to bed (just like brushing teeth and flossing).

For proctitis, and no upper colon involvement, suppositories can be a treatment of choice. THere are 500 mg and 1 g suppositaries. Enemas can go up to 4 g. what amount of medication is there in your daughter's enemas?
11-26-2015, 03:33 PM   #142
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I had both as well. Enemas were very hard to keep in and quite often when I was in a flare, either right after one was put in at night or in the middle of putting it in I'd have to go to the bathroom. At that point, it was a waste of time and money. The suppositories, I do better. Only thing that helps me is a little bit of KY on the tip of it before it's stuck in.
01-19-2016, 06:26 PM   #143
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How is everybody? It's been a bit crazy in my life lately. I think the best thing would be to put this link in to help you see.

http://www.crohnsforum.com/showthrea...840#post913840
01-20-2016, 11:33 AM   #144
scottsma
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Hi XstitchG,have been keeping up with your interview.I hope you get the job,if you're sure you want it ?(not sure why I'm saying that)
All's well with me,or as well as it's going to be.Like most of us,I don't expect to much,then I'm not disappointed.Health wise,that is.

PS.I must say allowing people to interrupt an interview was uncalled for.They could have put an INTERVIEW IN PROGRESS sign on the door.Or maybe it was a test ?
01-20-2016, 05:55 PM   #145
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Glad to hear you're alright and hope everyone else is the same. I would love to have this job. It's just that my husband is an airplane mechanic, so I'm hoping to somewhat match his hours so we can continue spending time together.

That area where we were at was just a busy place. When the manager opened the door, he did breifly explain that we're in an interview and if they could come back later. I do think they were afraid I would be annoyed with the inconvenience. But, being with the company as long as I have, I know there's no meeting without interruptions.
01-21-2016, 09:09 AM   #146
scottsma
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I know you didn't get it and you're disappointed.No amount of well intentioned platitudes
Is going to help.After 15 yrs,maybe it's time to take stock.Not easy,I know,with everything that goes on in your life.It's good that you want to spend your free time with your hubby.So put this week behind you,take time out,and have a re-think.Tomorrow is another day,thankfully.
01-21-2016, 10:21 AM   #147
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Thanks. Today is a busy day. My husband is going into the dental office today to get a tooth pulled and replaced. So, am afraid he's going to be in a bit of pain. First real time I've had to drive him for a medical thing and I'm feeling for him.

Tried looking at job ideas last night, but came up with nothing. I might have to ask around for ideas. But, will wait for that. Right now it's more important to be there for my husband today. Thanks for the advice. I know I can pm you if needed.
04-11-2016, 05:27 PM   #148
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How're things going for you guys? I hope everything's alright since it's been so quiet on here.

Still applying for other jobs but haven't had any bites. Also, been in a back and forth flare with all the stress from work. But, we just got a new store director last week that's in here to boost morale and is clearly there for us rather than the managers. So, hopefully that's going to be a good thing.
04-12-2016, 08:54 AM   #149
scottsma
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That's got to be a good thing ? All's ok here.Good days are good,bad days are manageable.Lot's of bad mornings,but as long as I remember not to make appointments before noon,it's ok,but I don't know how some of you guys hold down a job.......


RESPECT !!!
04-12-2016, 04:47 PM   #150
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Believe me, some days I don't know how I keep working. Just gotta keep the ball rolling I guess. Yeah, we're about to see if this new director is a good thing. My manager keeps making mistakes right and left. Now that he's here, we'll see what he does. She just made the biggest mistake of them all. She told an employee that she goes by seniority which is a complete lie. I wouldn't be where I am today if she went by seniority. Especially when she gave new hires more hours than she gave and is continuing to give me...

I sure hope things start calming down for you though...
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