Update on Jer's Girl

[Nyx]

Yay for feeling good!!! I can totally relate!!

Has your doctor put you on any maintenance meds? I just recently started taking Salofalk again because I've been experiencing some Chrohn's side effects (joint pain and bad acne). Since I still have all my diseased bits left in (everything from my rectum up to the stoma) they're giving me a bit of trouble!! I hope to get them removed in the next six months. If you're not on any meds and still have diseased bits left in, you might be better off to head it off at the pass and get on some mild meds to control things. My symptoms are more than bearable (I don't have bathroom issues at all...just the joint pain and acne) but I'd rather be safe than sorry.

I'm so glad to hear that things are going well for you and that you're adjusting to your life with your stoma. Intimacy was the hardest thing for me....but once I got the pouch cover all was well!!! And I've found a pair of spandex shorts under my clothes works very well to flatten everything out (I have a very poofy stoma!).

Keep us posted on your progress...I hope it continues to improve

 

[Jer's Girl]

Cindy, I want to get on some maintenance meds, but I have had a hard time getting in to see my GI. He is very over booked. He said that he wants to see me ASAP, but I am still waiting for his people to call me with a date. I keep calling with no response. It is very frustrating. I have been through this with him before. If he wasn't such a good Dr, it wouldn't be worth it but he is. Sigh.

 

[acg101]

Hi Nicole, I am so glad you are doing so well!!! I am so happy that you are adjusting to your new life and have such a great positive spirit.
Reading what you went through and your triumph is so helpful for so many people and I hope that you will keep writing about your progress.
Regarding access to your GI doctor, consider switching. I have had one of the best GI in the US treat me for 15 years but he became increasingly difficult to reach. Maybe he became less available due to a combination of getting so famous and older. Nonetheless, given the nature of our disease, we need constant access to our GI. So I switched to a new GI, less famous, but a wonderful warm and always accessible when I need him. Consider switching, life is too short nd if you are not happy you can make this change and be in control.



It sounds like you are adjusting to your new life really well and have a great outlook. I'm so proud and happy for you You should post your story in the success story thread for people to know you went from a terrible situation to a great one! So many people are looking for proof that people can persevere through the bad stuff and I think you are a shining example of that! Hope your recovery continues to go well.

 

[Jer's Girl]

Hi guys! Haven't updated in a while, so here goes.

Today is day three with the same bag which is awesome for me. I know that most people go on average about 5 days per bag, but so far that has not been the case for me. I was having to change them every other day or they would start to leak, but ever since I started using the Coloplast SenSura bags (thanks Nyx!) I have had a lot more luck. I use the one piece. The longest I have gone so far is four days, but the cool thing about these bags is, although they finally do deteriorate on the inside near the stoma (eventually), they are great on the outside and do great under water which means that I may be able to go swimming this summer after all.

I am really excited (the strange things that get me excited these days) because it looks like the new design offers a peak-a boo window so that you can use the tan bags but still be able to look inside and check on your stoma. This will mean no more guess work as to when I need to change them. I haven’t gotten any like this yet and am hoping it is because they are cleaning out their old stock before sending out the new and improved stuff.

Since getting this done, my life has changed a lot, mostly for the better. I have ended up in the ER several times for major pain, but major pain a few times a month even is better than the non-stop pain I was in before this. On the other hand, I have been able to work, go out and live because of this decision.

The best part of having a stoma is that I have been able to eat whatever I want for the first time in 14 years. I have to be careful with foods like corn (I don’t eat it), but other than that, nothing really causes me any pain. Before I had this surgery, chicken broth was causing me problems. I was even afraid to drink water. Only other crohnies can understand what a blessing it really is to be able to eat without pain. I will miss this super power when (and if) I am able to get this reversed.

I have been gaining weight at an alarming rate since I am now able to eat what I want (ummm, ice cream…) and also because I am able to absorb nutrients. I am trying to remember that it is a good thing, and trying to learn the art of self control (harder than I thought).

My only real concern is leaking. I have only had one bad leak where the bag actually came off at work (ahhh! Bad day), but I have had several close calls.
My bottom and the rest of my body seem to be healing up nicely, so my hope is that when I see my Dr in a few weeks he will be ready to start talking about coming to the end of this journey. I am doing so well now that it is hard to remember how bad it was before, and I am pretty focused on getting this reversed and having a “normal” life again. Hopefully it will be the right decision for me. The way I see it, I can always have the stoma put back on (pulled back out? I don’t know how to say that), but I would like as many years without it as possible. I guess I am still holding out hope that there will be even more breaks in medical science before I have to make this decision again. There have already been so many in my lifetime.

 

[acg101]

Hi, What would be the best way to get samples from the 3 top companies?

Thank you!

 

[Jer's Girl]

I don't know. I just bought mine. It has been an expensive journey. Sorry. I really really like the Coloplast bags though.

 

[CDDad]

It's great to hear you are doing well! Hopfully the ER visits will end and no more leaks.

Dan - To get my samples, I visited the big 3 websites and they all had a place to request samples. It might be eaiser to call, but I was feeling a bit anti social after surgery.

-Joe