Thoughts PLEASE Newbie Crohn's

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Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 1/27/2008 5:47 AM (GMT -7)   

Hi all, I’d like to share my story and I hope maybe someone can help me understand.

 

I’ve been suffering with diarrhoea since what seems like forever I’m 37 now and I remember going to see a doctor in 1999 it was my local GP I complained then of constant diarrhoea, bloating and cramping she suggested it might settle when I returned the following week and again complained she suggested I try  a wheat and gluten free diet to see if it helped, it did for a few days then it was back but I pressed on with the diet and soon I was cutting out other things and  replacing others, I’d have good weeks and bad weeks. Some days I’m in so much pain I cry at the thought of going to the bathroom or eating something. It didn’t seem right but the doctor didn’t seem to have an answer.

Then when I met my now husband it was so embarrassing at first but he soon became very supportive trying to help me find things to eat that didn’t upset me, but after we fell pregnant twice and lost both babies we wanted some answers one test showed that I had Lupus anti- coagulant and that I should be taking aspirin daily but this didn’t really help my diarrhoea and cramping but I guess it seemed to take a back seat now as we were so wrapped up in getting pregnant and keeping the baby alive.

We did a few cycles of IVF after it was found that I also have endometriosis which could cause cramping horrible period pain, leg cramps and bloating it could also spread to the bowel causing diarrhoea and bleeding that I was now experiencing. So I began to treat my diarrhoea as part of my life I didn’t bother whinging about it anymore the doctors would just look at me as if to say it can’t be that bad and I started to feel like maybe it was normal or normal for me. But last Oct I had surgery to remove some of the endometriosis again and hopefully get some relieve, I was told it was everywhere “but on the bowel” and that hopefully it would settle with the endo gone from everywhere else.

But no not this time as the weeks have passed my symptoms became worse than ever even the littlest piece of food will burn straight away and be out the other end within 20mins or so some nights I’ll bloat so much it’ feels like a huge lump is forming in my stomach making it so uncomfortable to lay down stand or sit even when I’m not that bloated my belly is just sore to touch. so I made an appointment to see my now new GP in 10 days was best they could do, unfortunately I went to work one night feeling tired and run down as usual but later the pain in my stomach and belly felt like it was rising and burning like never before and into my lower ribs, the next day the stabbing pains and vomiting saw me go to the hospital a nasal tube was put down my throat to help stop the vomiting and drain the faeces 2 days later a laparoscope was done full thickness ulcers were found then another 2days a colonoscopy was done large bowel was fine professor believes I have Crohn’s of the small bowel and now wants to operate again to remove a section of small bowel as she believes I have a blockage or narrowing of the bowel as I’m looking around 6months pregnant I was on 50mg prednisolone now taking 37.5mg think I’m starting to feel a bit better but then I start to bloat again wake up skinny go to bed fat.

My symptoms not sure if all are related but I can go from constipated to diarrhoea in minutes although it’s not something regular but it seems to happen a least once every 2 months or so. I get really blurry vision some days and I’m fine others, had a huge sore on my tongue for months now just the odd one in mouth knees and feet ache

My belching could put Homer Simpson to shame. I have always suffered with migrans

I get sharp pain in odd spots chest area back and front, blood and protein in urine bright fresh blood after number twos and butt seems to ache at times, what used to be just lower abdo cramps is now also higher up and the last 2 days my sides are hurting maybe cause I’m so bloated.

Bottom line is I don’t think I know who or what to believe anymore so over the Diarrhoea and stuff and feel like what if this professor is wrong could it be something else and not Crohn’s. she was going to do some other camera test now she just wants to operate.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/27/2008 6:21 AM (GMT -7)   
Christiny you have been through a harrowing journey that has lasted far too long. You must feel like you are at the very end of your rope and, at this point, I can really empathize with your feelings of confusion. Your story is familiar to many here on this site. Sometimes it takes a long, long time to reach a diagnosis, especially in cases where the impact of low grade inflammation kind of sneak up on you. The onset of crohn's can take different forms. Sometimes it begins with a massive inflammatory event that can't be ignored. Other times, and it sounds like this is what has happened to you, the process is much less dramatic. Usually the inflammation is confined to one area of the bowel and it simmers instead of bursting into flame. Unfortunately after years and years of simmering inflammation scars and fibroid tissue can narrow the bowel to the point that passing feces becomes more and more difficult.

This is how my crohn's disease expressed itself. My disease was discovered accidentally during a routine internal when I was three months pregnant. But in the years following, I experienced all the symptoms you are now describing. As the strictures got tighter and tighter I became more and more uncomfortable alternating between constipation and diarrhea and between dress sizes as I could gain as much as three sizes around my waist from morning to night.

So it sounds likely that you are, in fact, dealing with crohn's. However, you still sound unsure and are questioning your surgeon's decision. You say you are on prednisone now, but are still having symptoms suggestive of blockage. Given your history, your symptoms, and the failure of prednisone to relieve your symptoms, I suspect that your surgeon believes the blockage in your bowel is caused primarily from scar tissue, not active inflammation. That is probably why she isn't recommending a pill camera to get a look inside your bowel. It is the most effective way of diagnosing what goes on in the small bowel, but, if you have significant scarring the camera might get stuck.

If you have a blockage caused by scarring, you have run out of options and surgery is the only thing that is going to bring you the relief you deserve.

It sounds like you need an opportunity to meet with either your GI or surgeon or family physician to discuss all the test results and find out exactly what they are thinking. Let them explain your options. I suspect if you do this, you will come to accept the need for surgery, but it is your body and you have the right to understand why something is being recommended and what are the alternatives.

Please keep in touch and take heart -- this might just might be the beginning of recovery and a chance to regain some normalcy in your life. If this is a crohn's stricture -- given your history, once it is removed and you are properly medicated and monitored you can look forward to regaining the health and vitality that you've been robbed of for so long.

How lucky you are to have a loving, concerned partner who will be there to support you in these next steps in your journey.

Best wishes
Belleenstein:

30+ years living with Crohn's.


Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 1/27/2008 7:18 AM (GMT -7)   
When i spoke with my specialist on Thursday she said that my bloods from Tuesday still showed inflamation although I was no longer aneamic and that she had planned to do capsule cam test but as I was so bloated she said she believed surgury was my best option as she thought it may have become to narrow or that it was blocked she requested X-rays again and more bloods I go back to see her again this Thursday. She did want to raise my Prednesolone back to 50mg to see if that helped as I had only been on 50mg for 5days then the 37.5mg for 2 days when I saw her but I asked that it stay as is because it seems to give me hot flushes and anxiety feeling. She has also told me I must quit smoking that it will only make me worse and I'am trying but maybe that is what is dragging this out. My diarrhoea seems more settled than ever only opening about 6 times a day and first one has been normal last 3 days but the bleeding seems much worse though and I'm still bloated at night sometime during the day but today was a skinny day tonight I've go a tummy again and alot of blood.
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