New here..some questions

[cubana]

new here..some questions

hello, everyone..hopefully everyone is doing well...

well, i was diagnoised with crohn's on november of this yr. i started with symptoms in May...i dropped ten lbs on the month of october...im taking pentasa 2pills, 500 mil. four times a day...ive had a endoscopy done and that was clear..i had the xray series done and that was also clear..i had a colonoscopy done but not a full one..my gi doc was away on a conference and the doctors that were performing were clueless with what was going on...so im going for a full colonoscopy dec.27th..i saw my gi doc on the 7th and said it is necessary to get the full colonoscopy bc on the blood test that they ran on me..i tested positive for crohns but the blood work also showed that i could suffer a lot from scarring and blockage..something he didnt tell me when i was first diagnosed..my heart stopped when he said that....and he will be taking a biopsy..and if there is anything wrong there..or my white blood cell count is high there i will start taking 6-mp...that is the plan...the pentasa has seem to help the big d has been less..thank god..but ive been more on the constipated side which sucks..im taking a multi-vitamin..which contains iron and the doc said thats y i probably ive been constipated...i didnt take the vitamin for 2 days and then i had D....so the doc percribed me something to put in my water or juice...when im constipated to drink so i can use the bathroom...bc when im constipated i also feel like throwing up...this is very frustrating..im glad it has calmed down a bit bc a few times i went to the er with really bad pain when the docs were still trying to figure out what was wrong with me..i have two concerns with starting the 6-mp..one is that i read it lowers the women fertility..i am 21 now and not planning on having children right now bc i want to finish school..(wasnt able to go to school this past semester bc of crohns..had to get off the train once and hurry to my moms house bc my stomach bugged out...lol..how have you guys gotten use to the symptoms..sometimes i get furious)...but my question for any ladies who have been on 6-mp was it hard for you to become pregnant?..my other concern is that 6-mp can raise your risk of getting lymphoma cancer..lymphoma cancer runs in my family..my oldest brother had lymphoma cancer..and my aunt had a type of lymphoma cancer in her stomach..and i had a cousin who had stomach cancer...so, im worried about the whole cancer thing bc i dont think it would be a good thing to develop lymphoma and have crohns as well...i know i shouldnt jump the gun and wait for the colonoscopy to be done...but i feel like these are legit concerns...i know i am going to have to do some adjusting...well thank you for reading and any information or advice will be great and much appreciated...

 

[Jeff D.]

My grandmother had lymphoma which ended up killing her. But I do not worry about it. I am 17 and I take 6-mp which has done nothing but help me get better. All of my blood tests are normal and stuff. If you are worried ask about other medication.

Good luck

 

[skeet]

Aloha cubana and welcome to the forum. You're right to be concerned, of course, but try not to scare yourself with speculation. The full colonoscopy might bring some answers, and a nice long chat with your doctor afterwards seems like a good idea, too. Cruise around the forums and you'll find lots of info from folks who have been where you are now, along with posts about treatment, diet and meds. And just shoult whenever you have a questions. Someone will pop up like magic and try to help!

 

[Skinsfan1229]

Its VERY unlikely to get lymphoma, and I dont know if this is like Remicade and Humira, but with those, they started off by saying they caused lymphoma, but now they think that they dont, they just make it easier to find pre-existing lymphoma. BUT Since it "runs" in your family I would think the doctor would take this into consideration and MAYBE try something else, not immuran though because their the same thing basicaly. He could need to try something like Methotrexate, which I take, or Cellcept is another.

Now to the blood work, I dont know how the hell is can tell through blood work that you have scarring first off. AND if you had "high white blood count" it would have showed up in THAT blood work. The colonoscopy is to confirm the crohns diagnoses. Which means you have Crohns Colitis, meaning in your colon, you didnt mention it being in your small bowel or anywhere else. I have , or had this also. I'm 21 male from VA.

Your dr , or you really, might want to try other things before going to an immuno-modulator/immuno-suppresent. Your very new at this to be doing that I believe, and not severe enough it sounds like. Plus why not try a different anti-inflammatory, you mentioned you took pentasa, but that starts releasing into your small bowel, and through the end of htat, this is your terminal illieum, and SLIGHTLY into your colon, barely. BUT you have Crohns colitis meaning its in your colon...you need to be on something like Asacol, which releases IN your colon, not your small bowel which you dont have problems with....Bring this up to your doctor please, and try it before going onto an immuno-modulator.

6mp for me suppressed my bone marrow, I had to be hospitalized, isolated, and everyone had to wear masks and me also, that came in contact with me, I was too suceptible to illness, or viruses, I basically had no immune system. I had to get daily shots and weekly shots of something else to raise my blood levels like hemoglobin and hemocrit, of course my potassium was low, its always low when i'm flaring.

It might not be the Iron in the multi-vitamin making you constipated...in fact I think its unlikely, it might say its 100 percent of your daily value, which is most likely isnt, but how much are you ACTUALLY absorbing? a lot of people with crohns have constipation type crohns is what I call it. Where I woudl say the majority have diahrea, there are those that get constipated, just like there are those that gain weight instead of losing it very rapidly and significantly.

Welcome to the Forum, I hope you keep coming back to read, learn, and post!, please feel free to participated in anything you can add to or would just like to comment on or ask a different part of the question.

 

[cubana]

thank u

thank u for the replies..just a few things..when i first started going to the gi doc he first perscribed prilosec to see if i just too much acid in my stomach...i took it but didnt help...then we tried a antibiotic but that didnt work..then from there i have the pentasa..i go back and fourth with the D and constipation..but once i started the pentasa the d has calmed down but have it here and there...now just seems like i've been on the constipated side...still get nausea...tired...my periods have become irregular..i get pain in my stomach...tightness..uncomfortable feelings still..still cant gain the weight i lost...i did ask the doctor if the colonoscopy came out with my white blood count is high or it is active then i would start the 6-mp...and i was like it would be a definate and he said yes..do u guys know of any other steps or medications i can bring up with the doctor?...any info about the pregnancy and 6-mp...but the doctor did say if everything was in in the colonoscopy and my white blood count wasnt high than i wouldnt start the 6-mp..thank u again...

 

[Dekar]

i doctor recommended 6mp when i first was diagnosed as well. said no and its been 2 yrs i didn really need it.

 

[devildee(donna2005)LOL]

Hi :welcome: cubana
thanks for sharing your story im sure you will get alot of answers by browsing the forums, hope to see you around

 

[Nancy Lee]

Hi cubana!

Welcome to the forums...where we're all in this together.
Please try to relax and put trust in your doctor..
he/she knows what is best for your specific needs.

There is always someone around here is you need to talk.

Once again...welcome!

Nancy

 

[mikeyarmo]

cubana,

I hope you found Skinsfan1229 post helpful, because I agree with much of it.

It is also common for one to feel like throwing up when constipated (at least I also felt that way). It makes sense that if nothing is going out one end, that things start getting backed up in your stomach and cause a sensation of coming out the other way! Hope that did not gross you out too much.

For constipation I would recommend trying to do some cardiovascular activity daily (even if that is only walking) and drink a lot of water. By a lot of water I mean at least 2 litres (8 glasses) a day. Some people even drink a lot more than that (like trying to drink 1 Litre before each meal). I think this can really help, so be sure to try it. Also if you are suffering from Diarrhea you will need to increase your liquid intake.

 

[Skinsfan1229]

I jsut wanted to add about the pregnancy think...the drug I take that is like 6mp is methotrexate like I said, and its a cytotoxic agent and says in the intructions that females should not handle it. I dont know if 6mp is along the same lines or not, but I know you dont take 6mp while trying to get pregnant and for a period afterwards, same with a male.

There are a lot of otehr drugs you can try before going to 6mp or any immuno-moddulator for that matter, and I think you should really bring up the asacol.

And as for you dr saying its a def yes, I dont agree with that, like my dr's say, they are there to reccommmend things IIIII make the decisions, not them, keep that in mind.

 

[ruthymg]

Hi and welcome, just wanted to add my views. I too have crohns in my small and large bowel, I tried Asacol and it did absolutely nothing for me as it doesn't absorb properly, the pentasa worked much better. Also, I was taking Imuran when I became pregnant with my second child at 30 years old. I stopped taking it once I found out I was pregnant but it didn't lower my fertility. I too have irregular periods, being on the contraceptive pill or injection regulates them. Before I had surgery, I swapped between constipation and diarreah and couldn't decide which was worse. Nothing I did seemed to make a difference, things just seemed to settle down once I had been on the meds a while. As far as the Diarreah goes, could it be certain foods that trigger it? the other symptoms you mention unfortunately are common with crohns and hopefully will settle down once you get the meds right. As far as getting pregnant is concerned, at your age you should have thousands of eggs in your ovaries and even if the meds lower them slightly, you should still have enough left over to concieve later on, your still very young. Hope all works out for you, feel free to ask any more questions, we're here to help.

Ruth

 

[cubana]

thank u

i wanted to say thank u to everyone who replied..and for the support and advice...i am just going to wait to til the colonoscopy is done and the results and just take it day by day..thank u again