Ulcerative Proctitis Support Group

[buttER]

Yes this You have inflammation but because we don't see it in the biopsy therefore it does not exist is hard to deal with. It is the lazy way out because no-one seems to be interested what is causing the inflammation. So much easier to say that there is nothing wrong.

When we don't have to worry about our illness there is always something else to bother us! Stress at work is no life quality. Why has the manager got it in for you? Must be a manager thing, there are some pretty mean ones out there (although I do know some very good ones too thank goodness).

 

[RickUK]

My GI told me that when a biopsy comes back normal it doesnt necessarily mean you dont have IBD. Because when they take swabs it depends what they looked for. He told me during colonoscopy that i had nonspecific proctitis which is UC in the rectum (in plain terms).

The biopsy swabs are taken to rule out other causes of the inflammation (campylobacter, shigella etc) and confirm that the GI's first instincts are correct.

 

[RickUK]

Hi guys
I had another colonoscopy and have mild inflammation from the anus to half way through the large intestine. The doctor told me and wrote it on a form for me to take home.
But the biopsy results came back normal, so now the same doctor says there is nothing wrong.
This is the third time this has happened - the time before I had ulcers and bleeding but still everything was "normal" and therefore the inflammation did not exist. Thankfully my family doctor agreed to put me on Asacol which really helped but has not completely got rid of the symptoms.

Just wondering if you have always had a positive diagnosis from the biopsies?

Thanks

My GI gave me Asacol, it is mesalazine, and is specifically for any forms of UC, and i "think" crohns ileo-colitis. They wouldn't give you Asacol if you didn't have IBD I am positive

 

[2thFairy]

My GI gave me Asacol, it is mesalazine, and is specifically for any forms of UC, and i "think" crohns ileo-colitis. They wouldn't give you Asacol if you didn't have IBD I am positive

Some GI docs are now giving Asacol for IBS sufferers, as they are beginning to acknowledge that IBS can cause inflammation, just no ulcers or bleeding. I'm sorry to hear that you still have no solid answers.

 

[buttER]

My GI told me that when a biopsy comes back normal it doesnt necessarily mean you dont have IBD. Because when they take swabs it depends what they looked for. He told me during colonoscopy that i had nonspecific proctitis which is UC in the rectum (in plain terms).

The biopsy swabs are taken to rule out other causes of the inflammation (campylobacter, shigella etc) and confirm that the GI's first instincts are correct.

Thanks for all the comments!

The hospital thinks it has ruled out all the likely bacterial/parasitic culprits with blood and stool tests. Seeing as I lived in South Africa and Namibia as a child and I have been ill since I was a child I hope it is not something exotic that has nestled somewhere and is difficult to detect. I don't think they specifically looked for infection in the biopsies unless something started waving at the pathologist.

So RickUK your doctor is happy to say nonspecific colitis and to try giving a treatment? I will have to try and persuade my doctor for the same approach. I mean inflammation seen in 3 different colonscopies is not coincidence. At the moment he wants me to stop taking Asacol because there is nothing wrong with me.

 

[RickUK]

King of Orange - yes. My gastroenterologist called me in for an appoiintment to discuss my biopsy results. He said the biopsy results were "as normal as they can be." He then said "I am going to give you Asacol Mesalazine which is a drug to hopefully keep your proctitis in remission" *Thats when i asked him if it was a form of IBD and he said what i stated in a previous post, it's essentially UC in the rectum as oppose to colon*

But he also definitely told me that biopsies can come back normal even with IBD as it depends what the biopsy looked for. My stool samples all came back normal when checking for parasites and bacteria too... although my faecal calprotectin came back very elevated. Have you had this test? Might be worth having it if not just to re-confirm that there is inflammation for a 4th time!!
3 different scopes finding inflammation each time is a bit obvious to me that something is going on in the gut


Just as a note, calprotectin is a stool test which looks specifically for inflammation in the gut.

 

[Cross-stitch gal]

In 2013 I was diagnosed with Ulcerative Colitis or more specifically, Ulcerative Proctitis since my inflammation was in the rectum by a flexible sig test. Last year 2014 we did a colonoscopy and my same doctor said he found no inflammation even though he did take some biopsies to make sure. I'm still taking my medications, however I did stop taking the Canasa for almost a year because I've been doing so well. Tonight we might be starting up the Canasa again since I saw blood.

But, I guess what I'm saying is that it would depend on what medication it was before stopping any of it. It's one thing to quit my suppositories, it's quite another thing to quit my oral meds. I can't shame anyone, cause I too quit all my meds just after I got married for a little bit. But, after my last flare there's no way I'd do that again.

 

[RickUK]

The sister nurse (who my consultant has given me contact details for incase of any flare-ups or issues), has just given me a prescription for suppositories for my proctitis as she said they may work faster than Asacol as they are being inserted right where the inflammation is almost.

Any of you prefer suppositories to Asacol or Pentasa etc

 

[scottsma]

I've used Asacol supps for 9yrs.Morning and evening while flaring,evenings only for remission.I have on occasion stopped using them for a while,but usually have a mini flare so it's sensible for me to persevere.They work very well for me,but I haven't used anything else to compare them with.When I did stop using for a couple of months,inflammation was discovered in my splenic flexure via a colonoscopy,and calprotectin levels were 300.I don't know why this happened.Tests are ongoing.For me suppositories work quite quickly,less than a week usually.Good luck.

 

[Cross-stitch gal]

Whenever I've been prescribed, I've always used both supps and oral. I believe the reasoning for this is to make sure to get at it both ways.

 

[2thFairy]

Suppositories worked great for me. Even when all meds failed me, the suppositories helped the pain and spasm. Don't stop your oral meds unless instructed to do so. You can use both at the same time.

 

[nitty]

Hello everyone.

I was wondering if anybody here has any experience with Balsalazide?

I've been diagnosed with Crohn's Colitis since the end of 2011 and after a bit of trial and error I was symptom-free for a couple of years whilst taking Mezavant and Azathioprine. With the doctor's agreement, I stopped taking the Mezavant about 8 mths ago due to fatigue and aching joints. All seemed well until about 3 mths ago when My symptoms returned, but it just seem to be proctitis rather than other parts of the colon.

I've been using Pentasa supps for 6 weeks which helped at first, but they are now losing their effectiveness (that happened first time round, too) so I need to go back onto another 5-asa. I was hoping that balsalazide, being a bit different from mesalazine, might not have the same side-effects.

It's not something that I've seen much about on this forum, but I'm keen to find out more before I ask the consultant about it.

 

[scottsma]

Hi Nitty,if you type Balsalazide into search at the top of this page,there will be lots of info.for you to digest until someone who has experience of it,comes along.Like you I was originally Dx'd with Proctitis but is now also Crohns colitis,but I'm not flaring just now so Gastro says to use Asacol for maintenance......Feel better soon.

 

[nitty]

Thanks scottsma,

I know your neck of the woods well - I grew up in Whitley Bay. I don't live there anymore but my sister does.

 

[1sickpuppy]

I'm currently taking Balsalazide (Colazal) for my UC. I originally had pancolitis which was treated with IV steroids and pred taper with Asacol. My insurance doesn't cover Asacol though so I was switched to Colazal. The only side effect I've noticed is a bloated belly that gets worse throughout the day - it was much worse on the pred though so I think it was a combination of the two.

The Colazal isn't controlling my UC though. After tapering off the pred my symptoms have slowly returned, though it's more proctitis at the moment I think. I don't think there are generally many side effects with Balsalazide, it seems to be one of the milder drugs.

 

[nitty]

Thanks 1sickpuppy.

I have found that neither a 5-asa nor Azathioprine on their own will keep my disease under control, but it would be useful to try the different type of 5-asa and see what side-effects I get. The nurse had suggested Salofalk, but to me that is just the same as the Mesalazine but with a different coating, so I expect the side-effects would be the same.

At least from this I have learnt that I will have to be on some sort of meds for life. When you have a drug-induced remission it's so easy to think that perhaps you don't need the meds after all. I guess that won't be the case for me, sadly.

 

[scottsma]

Forgive me if you've already mentioned this,but have you tried suppositories ? They've really helped me,but they are really only useful for the lower bowel/rectum area.

 

[nitty]

Yes, I've been using Pentasa supps for the last 6 weeks to see if that would help me get back on track. Despite an initial improvement, I am now on a backwards slide and getting worse again. Looking back in my diary, this is exactly what happened early on in my treatment. I'm just disappointed that this is all happening again despite still being on the Azathioprine.

I'm just in the process of putting together an e-mail to my IBD nurse today, so I'll see what she says.

 

[scottsma]

Maybe Asacol supps.would help ? I don't know.We're all different,and what works for one doesn't necessarily work for others.It's all trial and error.Good luck.

 

[nitty]

Thanks scottsma,

I may be being fussy, but I also don't want to be shoving things up my backside for the next 40 years or so I can avoid it, especially if they're not being that effective!

 

[scottsma]

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.

 

[Cross-stitch gal]

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.

 

[nitty]

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.

 

[Hope345]

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.

 

[Cross-stitch gal]

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.

 

[scottsma]

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.

 

[Cross-stitch gal]

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. oo:

 

[Hope345]

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

 

[Cross-stitch gal]

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/diseases_conditions/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!

 

[Mr chicken]

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

 

[Cross-stitch gal]

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...

 

[Cross-stitch gal]

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...

 

[scottsma]

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

 

[Cross-stitch gal]

Are you doing any better scottsma? I hope all's well with everyone else too...

 

[scottsma]

Thankyou for asking.:thumleft: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 ?:ylol::ylol:

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.

 

[Cross-stitch gal]

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.

 

[scottsma]

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.

 

[Cross-stitch gal]

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.

 

[scottsma]

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.:ghug:

 

[Lady Organic]

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.

 

[Lady Organic]

@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?

 

[Cross-stitch gal]

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.

 

[Cross-stitch gal]

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/showthread.php?p=913840#post913840

 

[scottsma]

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 ?

 

[Cross-stitch gal]

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.

 

[scottsma]

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.

 

[Cross-stitch gal]

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. :hug:

 

[Cross-stitch gal]

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.

 

[scottsma]

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 !!!

 

[Cross-stitch gal]

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... :hug:

 

[Cross-stitch gal]

Hope all's going well for everybody here!!!

 

[scottsma]

All's well here thanks.Still have morning problems,but as long as I make sure appointments are in the P.M. I can cope.
At my annual check up at my GPs (primary care ?) I was more than happy to be told my B.P.was down to normal,my "borderline" diabetes was back to normal and I'd lost 7 kilos in weight.I haven't been dieting as such,as I'm not overweight,but I am short so every little bit shows.I've also started cycling,which I enjoy very much.Since we lost our little dog last year it's been difficult to fill the days sometimes.
I hope things are going ok for you.I do read your other posts.Have a good day.:rosette1:

 

[Cross-stitch gal]

I hope all's well with everyone!!! Everything's alright here, but it's been a bit stressful if you've seen my other two posts. If not, to sum it up I'm still having trouble transferring at work and I'm preparing for two memorials for two of my 3 remaining grandparents.

On a lighter note. My birthday is in less than 2 weeks. At work they always sign and give me a birthday card. I'm always doing something goofy at work and making people laugh!!! Well. I happened to find my birthday card yesterday, in which they usually hide from me until it's time. I was good yesterday (and didn't look at it, just put it back like I never saw it), but if I happen to find it today I'm tempted to sign my own birthday card to see if anyone notices!!! We'll see what happens...

 

[scottsma]

Yes,just do it......
All's ok here,well if I'm honest I'm not having the best morning. Tummy is threatening,but what,I don't know.hahaha.Arthritis playing up too.So having a lazy (ish) day.Life's never boring when you're a crohnie.

 

[Cross-stitch gal]

Yes,just do it......
All's ok here,well if I'm honest I'm not having the best morning. Tummy is threatening,but what,I don't know.hahaha.Arthritis playing up too.So having a lazy (ish) day.Life's never boring when you're a crohnie.

Sorry you're not feeling good!!! That's for sure, life is never boring for us...

Yup, it was still where I could get at it last night! So, I signed it and we'll see if anyone pays attention. Here's what I put, if I remember right.

"Happy Birthday to me!!! I hope this coming year brings lots of laughter and not many tears!!!" And, then I put my initials. We'll see what happens.

 

[scottsma]

Hahaha,you could add "and from all my crohnie friends world wide".

Feeling Ok now (6-15pm) just very tired,and I've done nothing !!!

 

[Cross-stitch gal]

Amen sister!!! I'm not sure if I dare add on. I'm working 9am-6pm for the next week and most likely would get caught.

I can echo you. I'm pretty exhausted myself. Worked until 11pm last night and then pulled a 10am-7pm today. Plus, I have that virus going around that's making it's way to my ears giving me earaches. Took some sudafed to see if that will help clear it...

 

[scottsma]

I think I've said this before but I'll say it again.....I have the utmost respect for you and everyone else who is managing to hold down a full time job.Also those ladies with little kids to look after.And men of course,in case there's a riot.
I didn't become a crohnie until later, and all that was behind me.So I can just sit here and pamper myself if I have an off day.It has stopped me from replacing our dog which died last year though.I don't feel I can now give a dog the life it needs as I have in the past.

Have a good day.

 

[Cross-stitch gal]

Just remember, we love you too!!!

Unfortunately, some of us don't have much of a choice but to work either part time or full time. It gets very expensive at times being a Crohnie, and we all know it. Just gotta do the best we can with what we have...

 

[PixieNB]

Yeah, working with ibd sucks. Especially if you work somewhere that doesn't offer sick pay.... Got an observation: proctitis seems to give so much more trouble for people than UC elsewhere in the bowel - after 6 weeks of horrendous flare, my suppositories are finally starting to work and the proctitis is settling down. But I've still got some dark older blood appearing from inflammation higher up the bowel and this is not giving me anywhere near as many symptoms. I guess everyone's experience is different but that's how it seems to me.... Also, I've been approved to start humira now, just waiting for a nurse to come and supervise my first dose, show me how to inject myself, which sounds much more pleasant than sticking things up my bottom!! I'm really hoping for some long term remission.

 

[scottsma]

Yeah, working with ibd sucks. Especially if you work somewhere that doesn't offer sick pay.... Got an observation: proctitis seems to give so much more trouble for people than UC elsewhere in the bowel - after 6 weeks of horrendous flare, my suppositories are finally starting to work and the proctitis is settling down. But I've still got some dark older blood appearing from inflammation higher up the bowel and this is not giving me anywhere near as many symptoms. I guess everyone's experience is different but that's how it seems to me.... Also, I've been approved to start humira now, just waiting for a nurse to come and supervise my first dose, show me how to inject myself, which sounds much more pleasant than sticking things up my bottom!! I'm really hoping for some long term remission.[/QUOT

Welcome Pixie,good luck with your remission.I know what you mean about the supps.,I'm not using any meds.,at the minute,my choice,and I'm doing OK (ish)....But crohns is the gift that keeps on giving,so I'm always on the lookout for a "gift"..........:thumright:

 

[Cross-stitch gal]

I've been doing alright here even with all the stress going on. It's been helping since my store director showed up. I haven't been getting any less than 30 hours at work lately and this last week I had a whole week with a different schedule that gave me a break from the nonsense of closing.

It's still a bit crazy around here. Husband lost his wallet and we had to replace his ID and pretty much everything in it. But, then today we found out that his wallet had been found and put in the lost and found at his work. So, we were able to retrieve it even though some of the items we had to destroy because they weren't any good anymore since they'd already been replaced.

Plus, if you've been keeping up with my postings in the other thread/threads my grandpa fell and is still in the hospital. But, is slowly getting better. So, it's been quite a week for me. Go figure, it's my birthday tomorrow as well. Happy birthday to me!!!

I hope things have been a bit quieter for you guys.

 

[scottsma]

Glad your Grandpa is getting better.It's a horrible feeling when you lose,or even think you have,lost important stuff like wallets and purses.Glad it was found though,it stops that creepy feeling of fear that someone has your private stuff.

Can I be first to wish you a Happy Birthday for tomorrow.I hope you've got a day off work.

 

[Grant]

Hello everyone. I've finally been diagnosed with Proctitis after an MRI. I've been terribly sore for ages down below. I've been using Pentasa Suppositories with limited success & also Anusol Suppositories which do give relief but not for long. Sitz bathing also gives instant relief. I've been using Magnesium Hydroxide to soften things up as well. One more thing to say is on using suppositories I can actually feel how inflamed things get & when things get very swollen it makes it doubly hard to have BM's.
I'd be grateful for any hints n tips.
Best Wishes
Grant

 

[Cross-stitch gal]

I use a combo of flushable wipes and TP because just plain TP irritates and the wet most times soothes even just a little. But, not all these are completely flushable so I keep trash cans in my bathrooms with lids and a liner and take them out whenever it either starts getting smelly or full (or if I know company is coming and I sure don't want them to see it).

 

[scottsma]

Glad you've had your diagnosis Grant.I was dx'd with proctitis 10yrs ago and used Asacol supps.,which worked well for me.I agree with the moist wipes use and also maybe Vaseline afterwards.?

 

[Cross-stitch gal]

Prior to being diagnosed with proctitis I'd used both Canasa Supps and enemas (not at the same time though). Problem with the enemas is they'd never stay in me long enough to do anything and the supps didn't seem to work either. However, at the time I was so sick that nothing did work for me and my doctor gave up on me.

So, I changed doctors (and insurance) and this one decided to keep me on the same medications and try the supps again. Took awhile to kick in. But, eventually with the right diagnosis, right amount of meds and the right doctor I got better.

I guess what I'm saying Grant, is things will get better. It may just take a bit to kick in like mine did. But, we're here to talk to along the way.

 

[Cross-stitch gal]

I hope this finds everyone doing well. It's been a bit stressful at work the last couple of weeks so my stomach has been letting me know about it. But, work is settling down somewhat now and I hope that means the blood, diarrhea and all will too. Got an appointment with the GI on Thursday. So, it ought to be a busy weekend for me...

 

[scottsma]

For the most part I am very well.BUT...I just wish I could have less sluggish bowels.
Every day is the same.I'm back and forwards to the bathroom from getting out of bed between 7-8am, until nearly lunch time.It interferes with my life a LOT.I'm a get up and go person,and I just wish I could go once a day and get it over with.My diet's healthy,I take fibre supplements and drink lots of water.and I get enough exercise.Of course,it could all change tomorrow,I might not go at all,which I hate,or I could have diarhea,which I also hate.I bet you're sorry you asked eh ?

 

[Cross-stitch gal]

Stomach's been acting up lately. I'm afraid once we get started with all this holiday excitement my stomach goes crazy. Just a little too much stress for this girl to handle. :yrolleyes:

 

[Cross-stitch gal]

Happy New Year!!! I hope this is finding everyone well.

All is as good as possible here. But, I've got a colonoscopy planned for the 19th of this month. With this also being my work anniversary and all the excitement of work, we're hoping and praying I won't be in a flare during this time. Oh the joys of medical tests!!!!

 

[ned]

Just been diagnosed with colitis and would like some info on diet and alcohol intake plus the role of exercise. All tips welcome

 

[Cross-stitch gal]

Hi and welcome. I myself have not touched alcohol to date. But, here is some info for you.

https://www.ibdrelief.com/diet/role...y-bowel-disease/trigger-foods/alcohol-and-ibd

Nutrition and excercise is good for everybody. But, is especially good for us if at all possible. Here is some info on that as well. I hope this helps.

https://www.crohnsandcolitis.com/living-with-crohns-uc/ulcerative-colitis/diet-and-exercise

 

[Cross-stitch gal]

All's well for the most part around here even though things have been pretty stressful. Looking to go in for a colonoscopy soon once I can get an appointment. And am hoping things can be as in control as possible when that happens.

I hope all's going well for you guys...

 

[scottsma]

All's well here thanks.I don't usually have two days the same (in the bathroom) but I'm used to it and can cope.Nothing to worry about,and long may it last.Please keep us updated re: your colonoscopy.Good Luck.

 

[Cross-stitch gal]

Yuck, I hope things start calming down for you.

I did call trying to get a new appointment for a colonoscopy without any luck. For some reason the office decided I had to wait to schedule until I had some sort of 15 minute talk on the phone to update on what medications I'm on and who knows what all. So, that's scheduled for the 20th at 2:15pm when this happens and supposedly then I'll be able to get my date then...

 

[Cross-stitch gal]

WOW. Can't believe it's been since april since anyone's said anything on here. Sure hope no news is good news...

 

[scottsma]

All's well here thanks.Mostly.Mornings will always be a problem I think but as long as I don't HAVE to go out,I can cope.I'm not on meds.except Loperamide when needed and Dulcolax,when needed.I try not to take any at all though to avoid complications.

I hope you are keeping as well as you can.

 

[Cross-stitch gal]

Glad to hear for the most part! Sorry about the mornings though. I'm doing as well as I can too. Husband's made it through almost a week of his 4 week class for work. Quite the challenge with us being on different schedules for pretty much the first time since we've been married. And, we're both exhausted but are surviving...

 

[scottsma]

You have to make the most of your rest time and not try to do to much housework/gardening.Easier said than done,I know.

 

[Grant]

I saw my Specialist today & he scoped me with the small scope that just goes up & round the corner. It hurt like hell tbh, I actually shouted out which is unlike me. He said I have mild proctitis in the rectum & I said well it may look mild but it hurts like hell. He understood, one of the better Gastroenterololgists I've come across.
Unlike a Colonoscopy no sedation & painkillers intravenously, no gas & air. IMO a far worse experience than an actual colonoscopy.
Rgds
Grant

 

[Cross-stitch gal]

I'm sorry you're still flaring Grant. But, at least you have a doctor that understands. Yeah, I think I may have gone through that before too a few years ago. Not the most fun...

 

[scottsma]

A sigmoidoscopy I think ? That's how I was first dx'd 11years ago.I see you've been through the list of meds and surgery.What are you taking/using now and are you still suffering from proctitis ? I only ask because I was dx'd with crohns colitis 2 yrs ago,meaning the inflammation had move up into the colon.I no longer use Asacol supps.nor do I use any other meds except tramadol and amitriptilyne for arthritis and back pain.

 

[Grant]

Scottsma, I'm on:

Pentasa
Questran
Calceous
Loperamide
Sanatogen
Magnesium Hydroxide as required
Hydrocortisone 2.5mg muco-adhesive buccal tablets sugar free for mouth ulcers.
Inflectra 6 weekly.
12 weekly B12 jabs.

My Specialist informs me that my Crohns Disease is very aggressive & it seems that way, I dont seem to get much peace with it tbh.
Rgds
Grant

 

[scottsma]

Goodness me Grant.I thought the list of meds on your Avatar were those that you've tried and have failed,not those that you were taking.I hope your doing OK today.

 

[Cross-stitch gal]

Scottsma, I'm on:

Pentasa
Questran
Calceous
Loperamide
Sanatogen
Magnesium Hydroxide as required
Hydrocortisone 2.5mg muco-adhesive buccal tablets sugar free for mouth ulcers.
Inflectra 6 weekly.
12 weekly B12 jabs.

My Specialist informs me that my Crohns Disease is very aggressive & it seems that way, I dont seem to get much peace with it tbh.
Rgds
Grant

All I can say is: WOW guy!!! I too hope you're doing alright...

 

[Cross-stitch gal]

How are you doing Grant? Are you any better than when we talked last?

 

[scottsma]

How are you doing Grant? Are you any better than when we talked last?

I hope you are keeping well too C.s.g......all's well here fingers x'd.

 

[Cross-stitch gal]

Doing as well as I can thank you!

Husband is into week 4 of 4 doing training at his work. It's been quite a challenge being on different schedules for us. He's been having to get up at 5:30am to go to school and I've been working until 11pm getting home around 11:15. So, neither of us have had much sleep on top of us having split days off. I've been on my days off while he's been at work and I've been working while he's been off. We're just thankful for this to be over!

We're also battling missing money from our account from the thief starting on my birthday. So, will be heading to the bank this afternoon to talk about that. And the excitement at work too. Needless to say, my plate is full!

But, on the 20th husband and I are off work for 5 days. We haven't decided what to do yet, but would like to go somewhere for a night or two. We'll see what happens...

 

[scottsma]

Not much fun for you just now then.Make sure you do something nice on your 5day break but make sure it's restful not stressful.

 

[Cross-stitch gal]

The eclipse is supposed to happen on the first day 8/20. So, if we can get up early enough we'll probably be able to see that from our house. We wanted to go to Crater Lake, but with it being so dry lately we're not sure if we'll be able to go. So, that's up in the air. But, we are planning to get away for a night or two!!! Here's the link so you can see what I mean about Crater Lake.

https://www.nps.gov/crla/index.htm

 

[scottsma]

I hadn't heard about the eclipse,I wonder if we'll get to see it over here.

 

[Cross-stitch gal]

I'm not sure. But, it's such a big deal that I guess everyone is flying into the states for it and the hotels are all completely booked. Looks like the last time we had a total one was in 1918. Which is why it's such an ordeal. Here's the info on it.

https://en.wikipedia.org/wiki/Solar_eclipse_of_August_21,_2017

 

[Cross-stitch gal]

The 5 days off were nice and very needed!!! We decided with all the craziness not to try to spend the night anywhere, just to do a couple of day trips where we could sleep at home.

On Sunday we went to Cedar Grist Mill which is an old flour mill a few miles away from us that originally was built in 1876. It is now run by volunteers that only show the place a couple hours a week. Which is why it's free except for asking for donations to keep it running. It was really cool and we got to bring home 2 lbs of free freshly ground flour.

http://www.cedarcreekgristmill.com

Tuesday we went to the beach for the day and it was beautiful!!! Even though there was still a bunch of crazy people there for the eclipse we were thankful we got away. It was extremely hard going back to work on Friday. But, at least we got to be off to enjoy ourselves for a bit.

 

[StrugglingMom&Wife]

i am 26yrs old and i have a 3yr old daughter who has a genetic disorder called 15q11.2 microdeletion. shes missing a part of chromosome 15 and as a result of that she has a seizure disorder, severe anxiety, adhd, an arachanoid cyst in her brain, acid reflux, congenital ptosis of the eye(which shes had surgery on twice so far), an eating disorder that causes her to have chronic constipation, sensory processing disorder, sensory overload disorder, developmental delays, and ptsd when it comes to doctors and hospitals. about a year ago my fiance of 5 1/2 yrs was diagnosed with diverticulitis. he was hospitalized for a week because he had an abscess in his stomach that was extremely close to bursting open. he also has anxiety, depression, add, ocd and about 2weeks ago he was diagnosed with ulcerative colitis and has since been doing blood tests and getting no results from his doctor. i was diagnosed with ocd, severe anxiety, bipolar depression, rapid changing bipolar disorder, chronic headaches and migraines, chronic constipation, chronic urinary tract infections, muscle spasms that affect my back, knees and hips, cirrhosis of the liver, adhd, and ptsd. i have way way more on my plate than i can handle. i am extremely stressed out with everything thats going on. i have no family to help me and no friends either. my fiances family are all either way too busy or just cant afford to help us. he cant work because of his UC and my daughter gets disability but its nowhere near enough to cover our bills and necessities. im trying to find a job but nobody will hire me because of my bipolar disorder and my fiance needs me at home to help him and to take care of our daughter as he is not physically able to watch her. hes in constant pain and discomfort and can hardly make it to the bathroom let alone chase a 3yr old around all day. i just dont know what to do. his doctors just keep doing bloodwork on him and wont do any other tests. the meds they give him dont do anything and everytime he makes an appointment to see his doctor the office either doesnt put his appointment in their system or his doctor has some stupid excuse as to why he cant see him. the emergency rooms dont do anything for him except put him in more pain. its an endless cycle of nothingness. we are forced to do our own research online to try to find relief and more info on his conditions and all that does is worsen both of our anxieties and cause me extreme emotional distress to where im almost having panic attacks. we just need answers. i dont know how much more i can handle. im exhausted emotionally, physically and mentally. i wish we had some help.

 

[Lady Organic]

Hi StruggllingMomnWife.
You are sure going through a lot and I can imagine this not being easy. Would your husband have the possibility to change his gastroenterologist? When we dont have good service with one doctor, it could be possible to change. If your husband is still experiencing symptoms of his UC, a short colonoscopy should be done. Blood test do not always reveal inflammation. If colonoscopy is not possible, fecal calprotectine is a cheaper test that can reveal inflammation and disease activity.
As for coping with the stress, if seeing a psychologist is not possible for you, I would suggest to go to a community center in your area, there may be a community worker to whom you could speak on occasions and find some support, for free. This would sure help releasing some stress and keeping hope.
Wishing you the best

 

[StrugglingMom&Wife]

Hi StruggllingMomnWife.
You are sure going through a lot and I can imagine this not being easy. Would your husband have the possibility to change his gastroenterologist? When we dont have good service with one doctor, it could be possible to change. If your husband is still experiencing symptoms of his UC, a short colonoscopy should be done. Blood test do not always reveal inflammation. If colonoscopy is not possible, fecal calprotectine is a cheaper test that can reveal inflammation and disease activity.
As for coping with the stress, if seeing a psychologist is not possible for you, I would suggest to go to a community center in your area, there may be a community worker to whom you could speak on occasions and find some support, for free. This would sure help releasing some stress and keeping hope.
Wishing you the best

yes i am going through alot right now. it wasnt my choice but its ok. he hasnt seen a gastroenterologist yet just his regular doctor. that doctor just ordered blood tests and wouldnt give him any kind of meds for his anxiety or his UC. he kept moving my husbands appointments around and canceling them for no reason so we recently got him switched to another doctor who after just one visit sent out a referral for my husband to see a psychologist and he ordered a colonoscopy and stool sample tests. he also gave my husband some medicine for nausea caused by his UC and something for anxiety until he can see a psychologist at oak lawn. this new doctor is helping my husband alot so far. as for myself i am seeing a counselor for numerous reasons other than just this but i feel like having friends or talking to people who actually know what we're dealing with right now might be more helpful.

 

[Cross-stitch gal]

Welcome! We're glad to be here for you and I know that sometimes a little experience although not the same is kinda nice. Just let us know.

 

[Cross-stitch gal]

Boy, it's been a long time since anyone's talked on here! How is everyone doing? It's been pretty stressful for me work wise and at home too. But, my stomach has done alright for the most part. I hope the same is happening for you guys too...

 

[Grant]

How are you doing Grant? Are you any better than when we talked last?

I'm so sorry I missed your post back last August Cross-stitch gal. Well like most of us its a constant helluva journey.
Since I last posted I've had lots of ups & downs. I seem to go on different paths after every infusion, sometimes good sometimes very bad. I had my last infusion on the 27/12 & have been ok. But previously I had a terrible time, had a Faecal Calprotectin level of 1184 & my Specialist Nurse was straight on the phone to me when she got the result. I was feeling terrible tbh, liquid diarrhea, nasty stomach pains leading to me using painkillers to try & sleep.
Now I know there's a school of thought about the use of Placebo's, but I got absolutely nothing from the previous infusion. The National Health Service in UK is under enormous strain & cost cutting is endemic & I cant quite believe that I'm even thinking this but how can 2 infusions be so totally different.
Anyway @ the moment things have calmed down to a reasonable level thank goodness & I do hope you're doing ok.
Best Wishes
Grant