• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Not alone

Hello! I have been reading this site for a couple of weeks and finally joined today. I am new to this with only a diagnosis a month ago after a year of pain etc and a diagnosis of a *simple* ulcer and treatment for that. I landed in the ER the day after my hubby shipped to Kandahar and with quick x-rays, tests, CT and 2 weeks later the GI series, I have a diagnosis and actually welcomed it, but now I am not so welcoming as many issues are quickly arising and I have been switched on so many diff meds (hundreds of dollars go unused upstairs!). Currently on the pentasa (4 g) and predisone (40mg) for at least three weeks and have a consult with a surgeon for already present and quickly massing problems.

I am finding it hard daily as I don't know what's coming next and from all the reading I am doing, I think that might be about right. This seems like such a wild and strange disease that is always changing directions. I am also the type of person who functions so much better with information and organization. I really appreciate the personal information that I have found on here esp when I am looking for insight into the meds/side effects, or just someone who had a day like me at some time. It makes you feel more normal - esp as this comes as a new thing to my family and no one really understands it. I do have a great GI already but so much is up in the air that it's hard to know what to do day to day.

I just wanted to say hi I guess and thank everyone for being here and sharing stories as they help us *newbies* in more ways than I think you know!
 
hi & welcome keara :)

i'm sorry to hear of the downs that crohns is bringing you right now, and hope the correct meds and advice will soon bring you back up again.

i think the sharing of experiences and feelings on this forum is invaluable to anyone who has, or thinks they may have, crohns disease. i've certainly never felt a part of anything like this with regard to my illness before discovering this place.

crohns does bring all kinds of different symptoms to us, and they differ from person to person as well. but its a learning curve, and eventually you'll get to know how to treat certain signs, and what suits or doesnt suit you. as well as the insight on this forum into medications, there is also a lot of dietary advice which is really helpful if you're not sure which foods to avoid etc..

looking forward to seeing your posts :)

dingbat.
 
Thanks!

I have found this diagnosis very ironic as i have always watched my diet and been a big one into health and well being so it`s funny. I keep saying if I had known I would have eaten more hamburgers and ice cream in the last few years for sure. I had eliminated many foods in the last year (most lactose, red meat, nuts, popcorn, caffeine *sigh* and more) as they were bothering me greatly so I showed up at the GI with many things already out. No wonder!

A learning curve is right. I just am trying to wrap my head around all of the symptoms coming on so strong in just 30 days...fatigue beyond control, complete loss of appetite and fear of eating esp in the am and eve(no sign yet after 2 -3 weeks of the steroid hunger pains), more joint pain than accustomed to (I have been in 2 car accidents since `93 both requiring long tern physio and one with surgery - although I can`t do my physio now for over a month as my muscles are so incredibly weak!), and now dizziness and spins but the doc thinks it`s the pred. I have to stay on those at 40mg for at least 3 more weeks to attempt to control the pain until they figure out more about a internal fistula that is causing grief they only found with the GI. They have helped a bit for 5-6 days until two days ago and now I seem to be backtracking again...plus I really wonder if the pentasa does anything at all (on 4g)...I have some confusion over what helps the inflammation to decrease and what is more of a blocker of pain. have no pain meds left ( I had 6 from the last ER visit but had to use my last one after 8 hours of putting up with mind boggling pain last week and that nerves me as I want to avoid the ER and wait times (although my first visit i was rushed in before the diagnosis....the 2nd time when I knew why I was in pain (probably, no GI test yet), they scuffed me off for five hours waiting for relief - it was awful. I hope another attack like last week comes in the day when I can see my GI - he said to call and come right in, I had to once and that was when I got put on the preds.

And I am trying to stay on top of my four children (incl a set of triplet 5 year old boys) who are desperatley trying to figure out why mommy isn`t so playful and has had to go to the doc so much incl the ER visits. It`s terribly hard.

I wish I could just go back and be me. It`ll happen, right ? Or at least close to me...I am optimistic most of the time but someone said I was in denial too....
 
just a couple of things which occurred to me, reading your post above, keara. as much as tiredness, weakness, dizziness etc can and are symptoms of crohns itself, the fact that you're not eating might be playing a big part in the way you feel too. you dont say if you're drinking sufficient fluids in the day, but if you're not, and if you are having diarrhoea as well - you could be undernourished and dehydrated.

it may be worth you getting some rehydration powders (dioralyte/electrolade etc) and seeing if you perk up a bit after one. also maybe some food replacement drinks such as ensure might help bring you some strength, just until your appetite returns.

also - you really do need to have something there for the pain when it gets bad. can your gp not prescibe something for you to keep at home, rather than having to go see him when the pain strikes?

it must be so hard for you right now, what with the way you feel, and having your kiddies needing their mum :( i have kids of my own, and altho not as many as you have, and mine are older, i still find it hard to accept my reduced energy & time with them. is there any help out there with regard to the children? friends, relatives, even outside help like fun groups organised by the local authority or church?

its so hard to say whether any of us will ever truly feel we have our former selves back.. but staying optimistic is important, and i'm sure you will become much more settled once the meds and diet, and maybe lifestyle changes, have kicked in.
 
Keara07 said:
Thanks!

I have found this diagnosis very ironic as i have always watched my diet and been a big one into health and well being so it`s funny. I keep saying if I had known I would have eaten more hamburgers and ice cream in the last few years for sure. I had eliminated many foods in the last year (most lactose, red meat, nuts, popcorn, caffeine *sigh* and more) as they were bothering me greatly so I showed up at the GI with many things already out. No wonder!

A learning curve is right. I just am trying to wrap my head around all of the symptoms coming on so strong in just 30 days...fatigue beyond control, complete loss of appetite and fear of eating esp in the am and eve(no sign yet after 2 -3 weeks of the steroid hunger pains), more joint pain than accustomed to (I have been in 2 car accidents since `93 both requiring long tern physio and one with surgery - although I can`t do my physio now for over a month as my muscles are so incredibly weak!), and now dizziness and spins but the doc thinks it`s the pred. I have to stay on those at 40mg for at least 3 more weeks to attempt to control the pain until they figure out more about a internal fistula that is causing grief they only found with the GI. They have helped a bit for 5-6 days until two days ago and now I seem to be backtracking again...plus I really wonder if the pentasa does anything at all (on 4g)...I have some confusion over what helps the inflammation to decrease and what is more of a blocker of pain. have no pain meds left ( I had 6 from the last ER visit but had to use my last one after 8 hours of putting up with mind boggling pain last week and that nerves me as I want to avoid the ER and wait times (although my first visit i was rushed in before the diagnosis....the 2nd time when I knew why I was in pain (probably, no GI test yet), they scuffed me off for five hours waiting for relief - it was awful. I hope another attack like last week comes in the day when I can see my GI - he said to call and come right in, I had to once and that was when I got put on the preds.

And I am trying to stay on top of my four children (incl a set of triplet 5 year old boys) who are desperatley trying to figure out why mommy isn`t so playful and has had to go to the doc so much incl the ER visits. It`s terribly hard.

I wish I could just go back and be me. It`ll happen, right ? Or at least close to me...I am optimistic most of the time but someone said I was in denial too....

WOW you really have your hands full plus just being diagnosed with CD is a handful in itself. I fell deeply for you. Here is my opinion. Yes you will get it to settle down at some point. I also have 4 fistulas and one up inside of me. Most of the time cipro and flagel(sp?) will stop the draining and settle them buggers down. Also ask your GI about Remicade or Humira. Pentasa is just like a maintenance drug for us.
Any more questions feelfree to ask away
Everything will settle down in time. Most people would like to think so sooner then later. Ask alot of questions to your GI before your surgery.
Goodluck and take care TAMMY
 
:) Thank You - I have started the ensure drink and while it doesn't sit well, I figure make everything count and it's better than soup nutriotionally. I have actually put on 2 lbs!

Hands are full, but I have a great family support system, and the determination to learn everyday. This forum is great for that like I said as it makes one feel normal again.

Plus, when the doc tells me something I can see where others have been with it - I did a lot with the prednisone (does everyone fear the steroid?) and so far the side effects are ok, but I saw some people don't get any for weeks and it looks like I am on for weeks and weeks (my fear now is tapering as I have not had too bad pain for 3 days and I am liking it!)...and now I am reading about Imuran as my doc is contemplating it for the fistula after a consult with the surgeon. I see lots of stuff about cancer though and there is a history in my fam but avoiding surgery is key so I can be home with the kids. A long hospital stay is the LAST thing I want.

Thanks again!
:)
 

Kev

Senior Member
Hey Keara... a fellow 'blue noser' (and to those of you in the rest of the world, its not a rare symptom of IBD).. Have you checked the label of Ensure to see what it contains in nutritional content? Milk products, milk solids, whey, lactose, cassein?

Some of those may not be agreeing with you... I'm not suggesting you stop using Ensure... obviously, since you gained 2 lbs, something is working for you.

Just that I'm sensitive to some milk products, like lactose for sure, and I have found that the levels of these problem items will vary within a brand, like if you look at the contents of the various flavours/varieties, some may be lower than others... OR, and this came as a surprise to me, but I've often found that the generic ones ARE nutritionally superior to the brand name versions. I've found 'Blue Menu', 'Heart Smart' or other 'supposedly' higher quality, better nutrition based products often arent' as good (nutritionally or taste wise) to generics. I make it a habit now to not assume any of the claims or adverts, I just read all of the contents, pick the best one nutritionally; and where the nutrition levels are comparable, the best one taste wise. It's been a real eye opener for me..
 
Yes a bluenoser for sure - born and raised and lovin it!

Yes, I am currently lactose intolerant but the ensure I have is both lactose and gluten free - i think it's just the volume going through as my eating is very sparse and forced. I read that after a flare period we can go back to having dairy without pain. Hopeful. Other foods too someday again, I wonder about donairs.....*sigh*

I'll have to check those labels. I took ensure as it was on sale, I had a coupon, and well, it seemed than arrowroot crackers and soup as was getting way to run down. My grammy had it for years too so I had seen many bottles at her place and it kept her happy till 95 years of age. (my fam does have longevity!)


TY
 

Kev

Senior Member
Yeah, I look kind of ridiculous buying baby arrowroots at my age, but the Crohn's IBD nutritionist at the Dartmouth General strongly urged I eat about 4 of them a day... Apparently their designed/intended to introduce soluble fibre to infants in a 'safe' way... good for us leaky guts too. But regular arrowroots may have to much fibre... it's just wacky. Do you go to the GI clinic at the VG? Have you been referred to the Nutrition clinic at the Dartmouth General? Some docs don't put too much faith in diet/nutrition... I think it's a smart practice to watch everything we eat.

As for meds, getting prescriptions, I don't want to be too nosey, but if you have a drug plan (Blue Cross, Mediavue, what have you) it probably isn't a problem. But, if you don't, and money is a problem... depending on your finances, it may be worth your while to see about the low cost Metro Dispensary at the IWK. It really cuts the cost of getting meds down to the minimum. The problem is that they are a 'no frills' outfit... cash only, no cheques, no debit, no credit cards... I just wish I could get my LDN from them, but for those, I have to go to Robie St. to the Pharmasave attached to the hospital (H.I.).. If you do go there, then it pays to ask the pharmacy staff for a parking sticker, otherwise you have to pay for parking (go figure).. Anyway, just thought I'd toss that out, just in case, OK
 
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Thanks Kev for the info.

Right now, My GI is the one here ion Dartmouth and he's been good and active. I have only been to the Dart gen thus far as I live on this side of the harbour. I think he is waiting for more settling before the nutritionist but I will aim to ask next visit. Oddly, I had an appetite last night and did eat a bit and well, back to liquid today. *sigh*.

Thanks fot the drug info too - our fam plan is working for now, but am waiting for some cheques as we have o pay up front and then submit a clain which is a hassle and a half and of course a wait to see if we get the $ back.

Keara
 

Kev

Senior Member
Hey, would that be Dr Murdock in Colby... he is an excellent GI. I've been to him.. I do visit a Halifax GI, tho I live on the opposite side of the harbour as well, but its primarily due to wanting Jamieson in Halifax as my GI surgeon if/when I need one.

I've been in the DG, the VG, and the HI.. Only places I haven't been hospitalized yet are Camphill, or the IWK.. But, kidding aside, the GI clinic at the VG is an excellent resource.. If you are ever in an emergency situation and can't get thru to your Dartmouth GI, try the HI ER and ask for the on call GI at the VG... Even if they don't have one on, they can usually get one of the GI NP to see you... I mean, some of the regular docs at the ER just dont' have a clue when it comes to IBD. I once went to the D.G. ER, and the on call surgeon was close to killing me (almost operated without realizing I had pancreatic cysts). I dont' recommend it for everything, as the HI ER takes twice as long as the D.G.
 
I see Dr Smith over here but have my appt with Mursock set today for March re surgery stuff so good to hear he's a good fellow. TY. Will keep the info in mind though for the ERs and the VG. Newbie alerts for me ,always helpful no dount in the future...
 
T

turbo_gc8

Guest
Hi!

I was born and raised right outside of Halifax! I just moved to Ontario about a year and a half ago for school. My corhns doctor in Halifax is dr.windsor. Seems to be a lot of people in NS have crohns
 
Small world turbo. Halifax rocks and I most pleased to be here again as I was too away for awhile, and will have to leave again (military life)....*sigh*

I only know one person with Chron's myself - an uncle (but he married into uor family) and he is newly diagnosed as well (in the last 2 years and is about 65 yrs old). So I am learning from investigating and experiencing.
 
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