Pregnancy over... IC back..

[jackiew75]

Uhg... So I was diagnosed with IC last August. Ironically enough, I became pregnant about 3 weeks later. To my surprise, ALL of my IC symptoms went away shortly into the pregnancy. I had actually forgot what it felt like to not be in pain during, before and after urinating. It seemed like the only time I experienced pain, was during sex. When I say pain it was down right debilitating.

Right after our son was born in June, the IC was/is back with a vengence. I truly believe that it is worse now than ever before. I also now have symptoms I believe are related to IBS.

So I go to see my doctor and to my AMAZEMENT, she has IC. I have never met anyone with this disease although I must admit, I do not walk around announcing it. She understood my pain and told me she could not do much because I was breastfeeding. I told her that the soonest the urologist could get me in was in 9 weeks... She couldnt believe it and personally called a clinic 75 miles away and was able to get me in the following day. I drive the 150 miles for the doctor to tell me to quit breastfeeding if I wanted Elmiron and call in 6 to 12 months if it wasnt working, oh and to continue taking Elavil. My doctor felt bad and put me on anti depressants at my request and Vicodin.

I am just at a loss. I kept the appointment to see the Uro in a week and a half. I cant continue down this path. I also cannot afford to do the pelvic floor therapy they tell me I should do... They said I need to give it a good 6 months to work. The Uro in the town I am in wants to distend my bladder during an office visit WHILE I AM AWAKE and I am nervous as anything.

Guess I was just looking to rant. I certainly dont ever want to be pregnant again (had tubes tied after 4 kiddo's) to relieve the symptoms and pain. Pyridium (sp?) helps a touch but occasionally makes me vomit and feel very sick. Neurontin is not an option since it made me forget my childrens names and the Vidodin works for about an hour or two tops.

Any suggestions would be greatly appreciated as I am at my wits end. I even picked up smoking again from the stress and I know that this is a big no no. I will talk to her about Chantix tomorrow.

[aleet7]

Jackie,
I'm so sorry that your IC came back! My doc told me that the only way to get instant relief was to get pregnant which he knew I couldn't since getting a tubal after my 4th child also!
I was told to try marshmallow root tea to help with burning. It does provide some relief for me( about as much as pyridium but without nausea). Also I'd be afraid to have the distension without sedation. If I can help it I won't allow a doc to do that to me without sedation.
I feel the same way you do about Vicodin, if I get any relief with it it only lasts for about an hour for me(even when I have to beg my doc for a script of it). Every bit of help I've gotten from my doc was a suggestion given to me by the ladies on this board. Right now I'm about to ask for something else that helps block pain like Elavil. Sometimes the pain meds that they prescribe for us doesn't seem like enough. That's when they need to consider giving you something to block the pain.

I totally understand wanting to breast feed! I breast fed all of my kids but my youngest because of meds. My doc told me that if I didn't take the blood pressure meds then I could suffer a stroke and then I wouldn't be able to breast feed anyhow! You have to take care of yourself so that you can take care of your little ones. I felt some guilt with it but I had to take care of myself for my kid's sake.
This is the right place to rant Jackie so rant away!
Best Wishes,
Aleet

[jackiew75]

Thanks for your kind words. I had just learned again to live without pain from IC and that was an amazing experience. It is just so depressing now having to deal with this all over again. I was even able to consume lemon and lime products as well as all of the other no no's during pregnancy without problems and now I feel like I am back to square one.

I will have to try the tea you spoke of. I do like the bit of relief from the pyridium but do not like cleaning up after an upset stomach from the stuff.

Like I said, I will talk with the doctor tomorrow about all of this. Maybe she can give me more advice. I would hate to take anything stronger than Vicodin but at the same time, I look at the quality of my life and it sucks. I truly feel like I am an 80 year old woman and I am only 33.

Lets hope tomorrow will provide some relief....

[leelee88]

Jakie, sorry things have came back.. I also would not suggest having a bladder distention while awake!! I hope you can get on the right combo of meds and get things calmed down soon!!

[jackiew75]

So I am back from the Dr.'s. I do not have much to update. She just shared her sympathy with me and said we need to get rid of the elavil and try noritryptiline (spelling way off). She said it had much less of a sedative effect. We shall see.

I also told her that the Vicodin was not working and she said she would look into other alternatives.

I also confessed that because of the stress of IC, I went back to smoking:loco:.... I know, I know... TERRIBLE for IC but I feel like I cant deal right now. All I can say is that it feels as though I am being diagnosed for the first time again as I clearly had "forgotten" about IC and pain for about 7 months. I asked her about Chantix and she said she would look into it because she was unaware if it was going to make the IC worse right now.

Anyways and as always, thanks for the replies..

[elamar]

I don't know about meds and pregnancy, but are you able to take urelle or prosed? They are antispasmodics and may help relieve your burning and pain. I take utira-c which is the generic for urelle. I also use cantharis which is a natural supplement that helps for burning. I would definitely ask your doctor about it first. You can find that fairly cheap at whole foods market. About $7 for a tube of it that lasts about 10 days. At least you might be able to try it without breaking the bank. I just don't know about it and breast feeding. Cystoprotek is another natural option used by lots of us. You can buy it through the website. I also take 2 mg of valium (generic) 3 times a day to relax the pelvic muscles. It's such a small dose that I don't feel woozy or anything. I also take atarax at night. Again, I don't know how these meds work for breast feeding mothers but maybe you can ask your doctor about them, at least to give you some options. If you are taking vicoden, I would think the valium wouldn't be as big an issue as long as you are using the low dosage. Good luck to you.

[TerriT]

Sorry to hear you are going though so much right now, I know how you feel. If you can't get your pain under control, it would be worth while if you can find a Pain Clinic or Specialist, mine is a life saver. I was taking Vicodin and it actually was helping. When I was referred to a pain clinic the first thing my doctor did was put me on a fentanyl patch. He says if you have pain that is constant and not going to go away, the patch is better because it delivers meds at a constant level so you don't have the pain roller coaster where you are always trying to keep up with the pain. You aren't always watching the clock waiting to take the next pill. They last 72hrs for most people. I have Norco 10/325 for breakthrough pain. I am also on generic Atarax and Elavil.


For those who have had reactions to the glue on the patches, try the Mylan Brand. They are only about 1 1/2 long by about 1" wide and the glue they use doesn't irritate like the others, which left me with open sores when removed. They are also flat, don't have the reservoir like the others either and they fit and contour more since they are smaller and more flexible. Walgreen's carried them then changed to Watson for most of their generic medications. I complained and they are now ordering them in for people who prefer them.

I am sure you will be able to find something that works for you.

[jackiew75]

I should clarify a bit... I am not pregnant anymore and I am done breastfeeding.... On that note...

Terri.... I never even thought about a patch or anything. Part of me thinks I should just learn how to deal with the pain but I read an article yesterday written by a Dr. about pain management in regards to IC and other chronic pain problems. What he spoke, was the absolute truth. I do not get high off of these meds, they just allow me to function better and enjoy life. I am not trying to escape my life.... I am trying to escape chronic pain.

It is very true that I end up watching the clock to wait until I can take the next pill. Like I had said earlier, Vicodin takes the edge of pain off for about an hour. I cannot go and just grab more tylenol as I dont want to destroy my kidneys. Motrin or Advil is not an option as I have learned that it makes the IC worse and I was taking so much of it there for awhile (VERY DESPERATE to relieve the pain) that I actually threw up (A LOT!!) of blood. That was the last time that I took any NSAID's.

I am hoping that she gets back to me today about the Chantix and other pain relief. I just have to be super careful of what I am taking. Right now I am having issues with excessive weight loss. My little boy was born 8 weeks ago and I am disgustingly thin only 8 weeks post partum. The doctors are even mystified as to why this is happening. I work at a restaurant (Outback) and eat ALL THE TIME probably the most fattening food ever and I am already below my pre-pregnancy weight (5'6" and 117 lbs). My body, in order to look and feel healthy should really be at 135 lbs. I have been tested for thyroid issues, celiacs, CBC and I am sure other things. I have not heard of anyone suffering weight loss from IC. Just another problem to deal with I suppose. They want me to go to see a GI doc but I just dont have the moeny to have the testing done at this point. All of the medical bills are coming in from the birth and it is a bit overwhelming.

TIA...

[hdb1982]

I was upset when Walgreens switched. Mylan pharmacuticals is right down the street from our Walgreens so you'd think they'd use them. Maybe it was a franchise wide decision and each store can't choose their distributer. They have a few Mylan pills but none of the local pharms use Mylan. They use Watson and M'krodt, I can't spell the full name