Newly Diagnosed Confused about the pain

[cleuger]

I've been lurking reading and learning mostly. I was just diagnosed 10/01/12 this goes way back to when I was 18 i am now 48 I had developed Diarrhea for about 3 weeks and then it suddenly went away as fast as it came on/ I fast forward to my 20's I had already had my son with no issues but then I became pregnant with my daughter and all hell broke loose Diarrhea, Fever, weight loss joint pain you name it but at that time my doctors said it was stress related had my daughter I only weight about 120 when I delivered her shes now 25 after I had her I became constipated ended up in the ER told to go home and take MOM which I did but also had to use Ducolax at the other end to get my bowels going after that I was fine until my daughter was 3 then the cycle started again the flare up lasted for about 2 yrs but it was mild no blood just constant bathroom trips, weight loose, Anxiety panics attacks, low grade fevers again dismissed as stress and IBS.

Daughter now 5 and flare up goes away I'm normal again. Daughter turns 7 Another flare but short lived divorced her father and bowels calmed down but had also been on around of antibiotics for an infection, Once again flare up went away was normal for a little over a yr then had meet my current husband got married became pregnant with my son who is 16 now and again all hell broke loose. I was sicker then a dog while I was pregnant with him, Multiple bathroom trips, day and night, could not gain weight despite the fact that I was pregnant, Low grade fevers it was a nightmare. gave birth stupid Dr that clipped me, clipped my muscle that controls my bowels from leaking out. Ended up with lots of stitched down there. I swear I guess I just thought this was how it was always going to be for me. So for the last 16 yrs I have been mostly living in the bathroom dismissed as IBS, problem is I have been battling anemia and low grade fevers and weight loose the whole time as well. Well the Poo hit the fan 4 weeks ago my Anemia got the best of me Hemoglobin 5.7 admitted to hospital by my MD he new my issues but I had not gotten in with a GI as of yet. Well I was there for a week 4 units of blood, Colonoscopy, Barium X-ray, Stool Test many many blood test and now I have Crohn's and was told by my the GI that I have had this a long time undiagnosed.

The one thing I don't understand is the pain I read that a lot of people have. For about 2 months I did have stitch like pain in my left side and back but nothing like what I'm reading on here. I currently have no pain at all I am currently on Pentasa, 40mg Prednisone, Canasa as I have it in my rectum as well. And have started Cimzia and Xanax for sleep. I do have 1 stricture but the surgeon that saw me at the hospital thinks that could be due to inflammation I guess. I also have several fissures now those do bother me. There is still some urgency a loose stools but thats it but I guess I just don't understand where the pain comes from.

Cindy

 

[Jennifer]

Hi and welcome to the forum!

Where is the stricture located? Having anything pass through that area (whether its scar tissue or inflammation) can cause mild discomfort all the way up to pain that makes you pass out. Everyone is different so its possible to not deal with a lot of pain or even none at all yet still have issues going on inside which you're seeing with other symptoms like diarrhea, fissures etc.

I'm sorry you went so long without being diagnosed. From what I understand here on the forum is that's very common unfortunately. Hopefully your current treatment will be what you need to go into remission soon. How long have you been taking the medication (especially the Prednisone)?

 

[cleuger]

Thank you for the welcome. From what I understand from the GI the stricture is on my left side Large intestine/Colon sorry I'm still learning the names for different places of the intestines/bowels etc..... He took his finger an tried to show me under my left side rib cage if I remember. I was so overwhelmed when he was telling me all of this I had no idea what a stricture even was.
He mentioned surgery to do a bowel resection there where the sticture is. The next day was when I had the Barium X-ray they used Gastrview fluid instead of the Barium and this was lower GI where they put the fluid into you using an Enema bag then inflate a balloon into your rectum to keep all the fluid in ( that was short lived the pain in my rectum was extreme from the balloon) so they did it without the balloon. It was after that, that the Surgeon had came to my room and told me that he did not feel I would need surgery for the stricture at this time but he felt like I should be treated with the medicines instead. Apparently there was a lot of inflammation. I started taking Prednisone on October 5th in the Hospital I have been on it at home for 2 weeks going into my 3rd week. Pentasa and Canasa the same Started Cimzia the last day I was in the hospital which was the 8th Going to my 2nd injection and follow up this Wednesday. I have no discomfort at all from my intestines unless I get gas which I use to have a lot of even that has calmed down a lot. I am also on a low residual diet. I do have irritation from my fissures now those can be a real pain. I went back to work last Monday so I am feeling better its like night and day the with urgency no more night time bathroom trips so far. Makes me appreceate the simple things.

I have never felt so connected to a group of strangers in my life until now meaning the message boards. I have always felt alone, different weird I guess because of my issues now that i have found the message boards I feel like I fit some where that im not alone and that there are many many people just like me.

Thank you for being here.

 

[David]

Hi Cindy and welcome to the community. I'm so sorry you've been going through so much, that's tough

You're on quite a list of meds though so I pray that they'll get you into remission as soon as possible.

You mention you get pain when you have gas, do you also have bloating?

 

[cleuger]

I do get bloated but that is usually when Ive eaten something like dairy. Which I am lactose intolerant. I don't really have as much gas as I use to that also has actually calmed down. Yeah I thought that was a lot of Medicine to start I guess they are just being aggressive with trying to get me into remission as I have had this a long time with no treatment. My problem is now I eat constantly I mean all the time. I have put on 12 lbs in 3 weeks but I needed it. I have more going in then coming out if you know what I mean. My poor bowels are not use to this their probably in shock.
I wanted to mention I had noticed an increase in bloating at the hospital when they put my on Pentasa.