Still getting symptoms...

[Cross-stitch gal]

It's been 2 weeks since I've seen the doctor and since I went down on the pentasa from 8 pills a day to 2. I was still seeing symptoms along with blood so increased the amount to 3 a day. However, I still have days where even though I only go to the bathroom once, I have a long visit resulting in having trouble getting off. These visits don't necessarily have visible blood, but they do start as stool and end in diarrhea.

A week ago, I started having pain/discomfort both sides in front of my hips. Then when I had to go, I'd get pain just above my vaginal area (as if from straining). The more I go, the more it tends to hurt. I see my new regular doctor for my yearly this next week 5/2 and am looking to talk to her about this as well. But, my gi and I agreed to wait a month or two to see how I'm doing. So, this is why I haven't contacted him yet.

Should I be worried about still having symptoms? I understand that when you've been sick for so long it'll take a bit to get better. Just not sure if I'm jumping the gun a little early or not. Thanks.

 

[scottsma]

Well GIs USUALLY know more about IBD then GPs,but it wont hurt to mention it next week.You're obviously concerned,and I believe we should always talk about our concerns.This dratted disease is different for all of us,and even our own symptoms can change without reason.The slightest twinge and we concentrate on it and fret about it until stress makes things worse.I know I'm not helping much,but it was just to let you know we're here for you.I hope things get better for you soon.

 

[sickinlk]

hi cross-stitch-gal,
yup, you shouldn't be having any symptoms to be in true remission. its very hard to achieve IMO. were you symptom free on 8? ru still using the suppositories?
ju

 

[FrancisK7]

I wonder too... were you symptom free on 8 pills a day? If so, for how long?

My GI said in cases of severe colitis such as mine he does not confirm remission until he can get a scope in there and confirm inflammation is gone, because even blood panels lie.

 

[Cross-stitch gal]

Thanks guys! It does help having you all here. :ghug:

Yes, I am still using the suppositories. Couldn't keep the 2nd one in long enough and that's why we decided to stick to using just one. No, I was not symptom free at 8 before we decided to go to 2. I'd been on 8 since I had been put on it last year. The 8 pills did seem to help for awhile at first when I first started taking it. But, it's almost like it all of a sudden just stopped working for me.

My concern is that since I'm still getting troubles it could be a challenge to travel. In a couple of weeks we'll be up in Canada visiting my in-laws. My sister in-law has Lymphoma Cancer and we're going up to see her as well as doing our yearly trip for my father in-law. We've got 2 six hour drives, one up there and one back. In-laws know about my IBD, but don't know to the extent that it's been. Got to admit that I have been in a flare before on our trips up there. Just not excited about dealing with the discomfort.

 

[2thFairy]

If you weren't symptom-free on 8 pills, why did your doctor decide to taper down? Are they planning on putting you on something else? That is odd.

 

[Cross-stitch gal]

Well. I'm about 5ft and around 85lbs. I've never been able to hit much more than 90lbs because I've always lost what I've gained. But, of course this is before I started seeing this doctor.

The last doctor I saw was more interested in pushing medication and any time I talked with her while I was in a flare she'd basically tell me to take more drug whether it'd really help or not. This guy however, isn't doing that and is trying to figure out what is wrong and how to best treat me. We decided to try cutting back on the pills to see if the problem was that I was on too much drug. But, if we found out that that wasn't what cured the situation, then he wanted to do a colonoscopy himself on me with biopsies to see if he sees something that the original doctor didn't. I don't doubt that he'll most likely switch prescriptions on me. Just wants to know where the inflammation or problem is first.

 

[sickinlk]

well that certainly makes a lot of sense. some drugs can cause more problems than they cure. the symptoms you describe (ie hip pain) arent typical IMO so its a good thing he's trying to figure it out.
its a good feeling having a doctor that is interested in your health. ive got a good gp right now and I think my GI finally understands me.
Seeing your GP is a good idea as it could be a lot of different things.
ju

 

[Cross-stitch gal]

Sad part is the hip type pain is something new. So, he hasn't heard that one from me yet. Figure I'll tell the new GP first to see what she thinks. We'll see if she decides to contact my GI from there. Hope to have more info for you guys on Thursday...

 

[Cross-stitch gal]

Had to reschedule my pap. Getting signs and am sure I'll be starting to bleed within the next day or two. Appointment will be on 5/22. Will keep you updated...

 

[sickinlk]

sorry your still suffering cross stitch. I wonder if the hip pain is pms related now. I would of had pretty bad hip pain b4 my periods and I had SPD during pregnancy. all hormone related. it didn't start till my mid 20's. I have the mirena in now so I don't get periods. one less thing to bother me. they were awful.
ju

 

[Cross-stitch gal]

That would make sense. But if so, why would it start so early? I'm hoping that if this new doctor works out as good as my GI did that the two of them can work together. Just got to take one day at a time! Not looking forward to my time either. Just hope to get it over with before our drive to the in-laws so I won't be cramping during the trip.

 

[FrancisK7]

Arthritic pains are not uncommon with inflammatory diseases, and UC is no exception.

Did you take much prednisone during your life? This can lead to osteoporosis. As a woman you are already predisposed. You are underweight as well, which can lead to certain nutrient deficiencies, etc.

It's also possible it's completely unrelated to your UC.

Hopefully your new GI can help you take control of the flare!

 

[Cross-stitch gal]

I was on prednisone quite often with my other GI. This GI says he likes to stay away from it as much as possible. I know that he's doing his best with me and that's a whole lot of stress off my shoulders! Will keep a watch on everything happening with me.

Thanks for all the support and helpful ideas

 

[FrancisK7]

Steroids are nasty, nasty and they can affect bone density, this has been a known clinical fact and side effect for decades now. My GI even prescribed CarboLoad when he Rx'd pred to me (it's a calcium supplement, over the counter, very concentrated) and I'm a male in his late twenties.

The thing that irks me with GI is that the quality of them appears incredibly uneven when you read people's stories, and the GI tract is one of the least complicated system to learn and treat (compared to specialties like cardiology, neurology, oncology).

I mean, the number of available treatments for IBD can be counted on one hand (anti-inflammatory, immunosuppressors, steroids, biologics, steroids, surgery) and a few sub-types of each. Diagnostic tests like colonoscopies, biopsies and enterography are pretty much infallible at confirming which disease it is.

Treating IBD effectively in 2013 should be relatively easy for physicians compared to 20 years ago, yet you've had UC since 1996 and you are still not in remission. I can't help but think there's been a huge amount of incompetence that is responsible for this. Unless you've been in remission before since then? Hopefully!

 

[Cross-stitch gal]

Yes, I have been in remission before. One of the times was even for a few years. This time is the longest that I haven't been in remission. Started about Oct/Nov 2010 and have been having a hard time kicking this one in order to stay away!

Have to admit though (Husband too) that since I've started seeing this GI even though I might still be in a flare. I've still felt better with him as my doctor than I ever did with my previous one.

 

[2thFairy]

Yes, I have been in remission before. One of the times was even for a few years. This time is the longest that I haven't been in remission. Started about Oct/Nov 2010 and have been having a hard time kicking this one in order to stay away!

Have to admit though (Husband too) that since I've started seeing this GI even though I might still be in a flare. I've still felt better with him as my doctor than I ever did with my previous one.

Yep. Having confidence in your doctor can make all the difference in how you deal with an illness, even if that doctor can't readily "fix" you.

 

[Cross-stitch gal]

I'm thinking more and more that what I'm dealing with is part of my flare. Stomach is getting more and more sensitive, in pain more often and I never know if the gas that I pass is going to be a dry one or a wet one. It's getting a bit frusterating.

But, have an appointment on wed and will see what happens. Will keep you updated.

 

[sickinlk]

I have that too. it usually means ive a lot of inflammation in my butt!!
a suppository should help with that.
ju

 

[Cross-stitch gal]

Sad part is can't tell whether the suppository helps or not. Been taking 2 a day

 

[sickinlk]

I use a steroid one called predsol or a foam called predfoam that I found very good. I also used a 5 asa one called salofalk foam. didn't like that at all. came straight back out with worst cramps to boot.
ju

 

[Cross-stitch gal]

Doctor appt went well. She decided to schedule a pelvic ultrasound to make sure everything is ok. Found a lump in one of my boobs so I get a mammogram & ultrasound for that too, even though she doubts it's cancer. Beginning to think it might just be easier for an overhaul! Just thankful to get things looked at

 

[Cross-stitch gal]

Going in for the pelvic ultrasound today. Been running to go pee a time or two during my shift the last few days. So, I'm not too sure how this is going to work with a full bladder. Praying that all goes well and the doctor will get what she needs for the test. Will update you again when I get the chance. Hugs to you all. :hug:

 

[sickinlk]

so am i tomorrow. they're looking for the mirena coil. its gone missing some how. good luck.
ju

 

[Cross-stitch gal]

Good luck to you as well. Please let us know how things go! Take care

 

[sickinlk]

how did you get on. mine showed 4 or more uterine fibroids about 5cm each or smaller. WTF. more medical drama. the coils still there so that's a relief. wont be getting pregnant on top of everything else.
ju

 

[Cross-stitch gal]

Didn't do mine as I started my period an hour or two before the test. Plus, was cramping. We'll try again next week 6/4. The day after 6/5 I have my mammogram & yearly eye appt as well. So, it'll be a busy week.

Sorry about the fibroids. Glad to hear that they are treating you though...

 

[Cross-stitch gal]

Did my ultrasound today. Wasn't able to drink as much as they wanted me to though, cause it was messing with my stomach. But, she said that because I'm so skinny it didn't matter. She wasn't able to get clear pictures of my left side when she pressed on me. But, was able to get all she needed when she used the scope. Don't have results yet. But, should tomorrow.