Still no answers :(

[sherry3535]

still no answers

hi everyone,
I just figured i would update everyone. i finally got the results from my pillcam, and it show absolutely nothing and my GI's wording was it doesnt explain the anemia or give any answers! UGH!!! He said that he has done everything that he can do, and has no idea what is wrong with me but its is clear that i have some type of malabsorption! Oh and he wants me to take a medicine for the D called Lotronex......i went to the websits and i dont kow if the risks of this medication is worth me taking it to stay out of the bathroom. So he wants me to see a doctor in Boston that specializes in IBD! I called to make an appointment and the first available is July 27th.....so frustrating. I asked if there were anyother doctors that i could see, but because i dont have an official diagnosis i cant see one of the other doctors unless i see a general gastro doc there. I do have the appointment booked for the 27th and i am on the "very lengthy" cancellation list! So do i just wait the 4 months? I just dot want to continue to lose weight and just feel like crap. Oh and my iron levels were finally better so i got a little over a moth and a half off from the iron infusions, and i go back for more blood work and to see hematologist middle of april. Please any advice would be great, i cant stand feeling the way i feel and looking anorexic ( my poor children are now dealing with friends asking if i am) which i am clearly NOT! I eat and suffer with the D! I hope someone can help me or just talk cuz i am so miserable and upset....
Thank you for reading
Sherry

 

[margie]

Sherry,
I am so sorry that you still have no answers and feel so horrible. I know what it is like to not have the answers, lengthy waits on doctors;and to have tests that show nothing. You might want to call your doctor back and see if his office can call the doctors office in Boston to see about an earlier appointment. That is too long of a wait.

I am here anytime you need to talk to someone. My heart goes out to you. You will be in my thoughts and prayers.

Big Hug

 

[same-old-thing]

I am so sorry....your story is identical to mine and I understand exactly what you're going through. Constant anemia, massive weight loss and every test including the pill cam ...all normal. It's been years and I'm still struggling along. If it's any comfort, at least we know we're not the only ones and that there are probably many more of us out there.
I really hope you get in to see the IBD Dr sooner than 4 months and pray he will be able to help. Take good care of yourself.

 

[Cat-a-Tonic]

Sherry, so sorry to hear you didn't get any answers from the pill cam. With regards to the long wait to see a doctor in Boston, please call them frequently to see if they've got any sooner openings. Last year, I called my local hospital to schedule my colonoscopy, and I was told it was a 3 month wait. I was feeling really ill and had no idea how I was going to last that long. I tried waiting it out, but I just felt worse and worse. After a couple of weeks, I called them again and burst out crying, saying I really needed to be seen sooner. The receptionist wasn't able to help me, but she put a nurse on the line who was sympathetic and she got me an appointment for the following week. So, for what it's worth, my experience is that if you cry on the phone (and speak to a nurse or doctor directly) you might just get bumped up. It's worth a try!

Good luck, and I really hope you are able to be seen sooner than July. I really feel for you. I know the frustration of normal test results (still undiagnosed myself after a year and a half!) and I know how miserable it is waiting weeks or months for tests. Try not to get too down about things (easier said than done, I know). I hope you're able to be seen soon and I hope you get some answers and some relief.

 

[Jennifer]

That's really frustrating. I do hope you get to see the specialist soon. I was underweight before my diagnosis as well and kids at school made fun of me for it. Keep pushing for a sooner appointment by giving them your list of your most horrible symptoms and never say that sometimes you feel ok even a little bit. Many times an ER visit can speed up the appointment process and they may get you in sooner by bumping someone else or seeing you in between patients. If its urgent enough, they can get you in so keep calling everyday and try to get a sooner appointment.

 

[sherry3535]

Thank you everyone for your support! It is so hard not knowig what is wrong with me and what is going on with my body!! I did call the hospital in Boston back today and i spoke to a patient administrator 9 or something like that) The woman was very nice! However my problem still is that because i dont have a confirmed diagnosis there is only one doctor that i can see( thats the doc i have the appointment with in july). Her advice to me is to go to the emergency room at this hospital, and the ER docs would start me in the right direction as far as treatment to make me feel better and then they will set me up with the doctors i need to see and sooner! So to me it sounds like a great idea, but on the same hand I just feel like i am going to get pushed away and laughed at because my symptoms are bad, but i dont know if they are bad enough to go to the ER!! UGH, i just dont know what to?? My husband just doesnt understand how the doctors cant figure out what is wrong with me! He is getting so frustrated as well and it is to the point that i feel like i cant even talk to him about what is going on with me anymore!
Ok so now for the ver strange story that i need to share with you all cuz it has me saying HMMMM... Back in October my best friend was getting married, and for her bachelorette party she wanted something fun but low key as she has major anxiety and doesnt drink. She decided she wanted to have a psychic party so that we all could get a reading and have our cards read! I have never gone to one and wen and just thought i would make the best of it, as i am not a firm beleiver in them. So i had a reading and my cards read, and it started off with my cards not being good...lol....and the majority of the reading was about my health! She said that i have been run down and very tired, and that there was something going on with my blood, she also said the docs have been having a very hard time figuring out what was going on with me, she said it will \take time but they will figure it out and that it is an auto immune disease!! She then said that i was going to get sick in the next few month but would "feel" better and then i would get sick again between may and july! So when i heard all this i was like yeah ok....i wasnt feeling great that day, but i havent been completely myself in the past 3 1/2 yrs. But then i got sick, and foud out i was severely anemic, had surgey the bood transfusions the iron infusions.....i forgot about the reading until my best friend vrought it up a couple months ago1 Pretty strange and most likely a coincidence but it still makes me wonder! Thanks again for all your support and i hope tp hear back from you all soon!! I definitely look forward to talking cuz it is great to hear from everyone and helps me get through the day!! You are all great and i wish you all the best!! HUGS to you all!

 

[Jennifer]

Screw that thought about you not being sick enough for the ER, go ahead and go. There are so many people on this forum who have had to do the same thing (even I had to before). Tell them what your most horrible symptoms are and they will be able to help. You don't need to have your arm lopped off to go to the ER. I've even gone to the ER for strep throat to get antibiotics because it was the weekend. You've got something worse then strep so don't let thoughts like those hold you back from getting the help you deserve.

As for the reading, I don't believe in that stuff either but it is an interesting coincidence.

 

[sherry3535]

Hey crabby,
thanks again for replying. It makes me feel great to have someone to finally talk to that understands what I am going through! I am going to try to go to the er soon! If that is a way that will start me on my way in a good hospital to get answers, then I will do it. I have to just figure out how I will be able to do that, I don't go to the er much at all for myself, just for the kids, so I have to have someone that can be here to watch my kids which is usually very difficult, as I don't have any family that lives local, they all live put of state so that makes what I have been going through even harder, and my husband works for his Dad. And has a hard time getting time off from work, and my I. Laws don't completely understand what I'm going through! I swear I think my mil would have thought this was all made up, but she brought me for my blood transfusions so I think she knows something isn't right! Ok I am sorry I just kinda went off again! But I do want to thank you so much for beong there for me and caring it means so much to me to finally have people that will listen and talk back!

 

[margie]

Sherry,
I wish that I was in Massachusetts to help you out with your kids, so that you could go now. I hope that you can get your MIL or someone to watch them. You need to go and get help and soon. Please try to have your husband get some time off to take you to the ER.

No need to apologize here, we all know exactly what you are going through. I am here anytime that you need to vent and talk to someone.

Big Hug

 

[Mark63]

Hi Sherry,

Just seen your post. Sorry your not much further forward after the pill cam. If the advice is to go to the ER in order to kick start the process with the guy in Boston you've got to do it! Surely, mil would understand if you explained. Wish I could do something practical to help out.

Mark

 

[Jennifer]

I see families in the ER all the time. You may only be in there for a day/few hours so your husband could watch the kids in the waiting room or another waiting area while you're being treated. If you both have cell phones, you can keep in touch by giving him a call or texting him what's going on and if not have him be paged by the hospital staff. You could do this on the weekend or on some day when he's not working. If things get out of hand then I guess the MIL (wtf is that? mother inlaw?) will have to deal because this time its an emergency.

 

[margie]

I totally agree with CrabbyRelish,
It is time Sherry to get some help.

 

[sms seattle]

Hi Sherry,
I weigh 147 lbs now but once was down to 105. Get a colon exam now any way you can! If it is Crohn's loprodamide (Amodium AD) works. I took Metamucil also and it helped. You could be lactose intolerant also. But go to a GI specialist now.
54 years of living Crohn's experience.

 

[sherry3535]

Margie- that is so very sweet of you to say that if you were here is mass you would help me out with my kids! that just brightens my day and is such a great feeling to have complete strangers be so sweet and understanding to me.
Mark- i just really dont understand why i have been having all these problems for so long, and the doctors can't figure out what is wrong with me, and that everytest is coming back normal! And i still have problems with my bum and the fissures are still not healed!! I also think that i am still very inflammed there too! So aggravatiung that i have all these doctors saying different things and just dont know what it is!
Crabby- as much as i would love for my husband to just pack the kids up and take me to the ER, he would never do that! We have 6 kids....lol. Ok before you all freak out, no i have not been pregnant 6 times.....I will try quickly to explain....my husband and i have 4 boys....12 yr old twins, 9 yr old and 2 yr old...and over 7 1/2 yrs ago we took custody of my cousins daughter and she is now 14.....we also became foster parents to the same cousins other daughter(so the girls are half sisters) this was 7 yrs ago when she was 8 months, and then about 3 1/2 yrs ago we legally adopted her, and she is 7. So my husband is not the type to sit in an er with me and the 6 kids. His parents have been away for over a month now and should be coming home this sunday, so i will talk to my MIL if i see her this weekend and let her know that i need to get into the hospital, cuz i need answers and cant continue to live like this anymore.
SMS- I had my most recent colonoscopy in december and it only showed that i had ulcerated fissures.
So i then had my 3rd rectal surgery in a little over 3 yrs, and the surgeon did a lateral shpincerotomy( i think thats what its called?) It sounded great at the time because i was in excruciateing pain for months from the ulcerated fissures, and every bowel movement i would be in tears which was and still is atleast 8-10 times a day! Well i wish i never had that surgery because here i am now with the fissures....the pain is much better but i still get some and now i am having incontinence! I used to take immodium all the time....i mean all the time and it would work like it is supposed to, but it was only temporary....and i would still get the horrible stomach pains and then would suffer with severe rectal pain like something inside me was pushing down on my rectum.....i fina;ly stopped taking it cuz i couldnt stand the pain i would be in jst to not go to the bathroom, and once it wore off i would still explode! I just hope i can figure something out and get in to the ER and hopefully get a doc that is understanding and doesnt push me away, cuz that is such a huge fear i have!! Ok well thank you all so so much for being such amazing people and listening to me! It feels so good to be a part of this forum even though i dont have the confirmed diagnosis! But i am still on the lialda.....just so confusing!! I am going to go to bed, i am exhausted but wanted to write back to you all before i went to bed! Thanks again and hopefully i will talk to you all tomorrow!!
Sherry

 

[Jennifer]

Seems like only the 2 year old needs much watching but every kid is different I guess. I was babysitting when I was 12 so they may be able to help out if they are told its a serious matter but again, not my kids so I don't know how bad it is. I just hope you get the help you need soon.