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Crohn's Disease Forum » Your Story » Hello Everyone!


03-13-2017, 06:41 PM   #1
Jbrbr
 
Join Date: Mar 2017
Location: United Kingdom
Hello Everyone!

Hi all. I was diagnosed with Crohnís Disease at age 18. Iím now 23, and only now starting to take the disease seriously. Iíve recently had resection surgery to remove some strictures from my small bowel, and Iíd rather like to hold on to the rest of it for as long as possible! I read a lot from your forum during my protracted hospital stay, and I found it very helpful to read about other peopleís experiences with the disease. I thought itíd be nice to join your forum to perhaps give something back.

If you want the longer spiel, I was diagnosed about five years ago after a few years of unexplained (and steadily mounting!) abdominal pain. I acquiesced to a rare visit to the doctor after a teacher noted that I was drastically underweight. A biopsy confirmed Crohnís in the terminal ileum, and I was prescribed corticosteriods (Prednisolone) to counteract the inflammation. The steroids worked fantastically, but unfortunately I went a bit mad for a while. Iím aware that Iím prone to low moods, but I felt depressed, confused, anxious; just all round awful whilst taking Prednisolone. I think that this was exacerbated by the fact that my doctor at the time was doubtful that steroids could have such an effect, so I thought that I was just over-reacting, which inevitably made me feel even worse. The experience scared me off of taking medications and from attending regular doctorís appointments. (As an aside, I really donít blame anyone for this. It seems that itís relatively recently that it was widely recognised that steroids can have such an effect).

From then on, I took no medication, saw no medical professionals, and essentially tried the ďgrin and bear itĒ approach. The pain and sickness quickly returned, and I tried my best to ignore it for four years, whilst I attended university. I managed to complete a dissertation and graduate, but four years on uncontrolled Crohnís Disease eventually took its toll. Soon after, the pain which had been very unpleasant but ultimately bearable, became agonising. I told myself it would pass, I stopped eating almost entirely, I was sick every day and I was exhausted. I dropped to 6 stone in weight. I frequently had the insane desire to cut myself open (is this normal?!). After a particularly acute bout of pain, I gave in and dragged myself to the emergency room, and was quickly admitted.

Steroids, morphine, NG tube, TPN, iron infusions, vitamin drips, different steroids, X-Rays, CT scans, biologicals: I felt like an irradiated pin-cushion. Blood tests eventually began to come back indicating no inflammation, but I still couldnít eat without a great deal of pain. The doctors soon concluded that I had scar tissue at the terminal ileum, and surgery would be performed after my nutritional status improved. My weight continued to drop despite TPN however (just under 5 stone! It still seems unbelievable!), and the surgeons advised that I have the procedure as soon as possible. I agreed to an ileostomy and had the surgery the next day.

Woke up without the stoma Iíd been expecting. My surgeon came to speak with me soon after I woke up and explained that heíd found another stricture, this time higher up in the GI tract, in the jejunum. He thought Iíd appreciate it if he went ahead and removed that one as well, since it had narrowed the bowel significantly (it was ďlike a ratís tailĒ, in his own words). He explained that he didnít want to create a stoma so high up in the bowel, since its absorptive capacity would be seriously compromised. So, I ended up with a double resection.

I recovered quickly with no complications other than ileus: it took quite a long time for my bowel to start working again, which sent me into what I now realise was a largely unfounded panic: scary words like ďbowelĒ and ďfailureĒ kept popping into my head. I continued with TPN for another week, and tentatively started to eat small amounts. I found that I could eat without pain for the first time in years, which took some getting used to (I was seemingly habituated to living with chronic pain, so this revelation was like discovering another planet). Then, I was quite suddenly asked if I wanted to go home. After two months in hospital, I couldnít help but think that I might be living there forever, so this was a nice surprise! PICC line was removed the next day, was given a box of painkillers, thanked the doctors and nurses, and I was free.

Now, Iím feeling a lot better, and a lot happier. I didnít realise how bad I was until now; I think Iíd forgotten what it was like to be fit and healthy. In retrospect, I was pretty depressed. As I said, Iím taking the disease more seriously now, and so I take immunosuppressants to try and keep myself in remission. Part of me feels quite guilty for letting myself get so bad (in addition to refusing to seek medical help, I developed a nicotine habit, which I now know was probably the worst thing I could possibly have done! Needless to say, I no longer smoke). Iíve been told categorically that I shouldnít blame myself, but at least Iím now determined to try and stay healthy, to the best of my ability. As far as Iím aware, itís pretty likely that symptoms will recur after a few years, or even months, and that itís ultimately inevitable. I feel Iím more able to deal with it now, though, with the help of some rather powerful drugs of course.

Kudos if you read all that! Apologies for all the waffling; Iíve not really talked much to anybody about this. Naturally, it all seems quite interesting to me, but Iím sure itís relatively run-of-the-mill for most of you! I'm in no way an expert, but if I can help other people in some small way then that's great.
03-13-2017, 07:26 PM   #2
ronroush7
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Hi. I am glad you are doing better. Yes, people with IBD can have depression. Sending support your way.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
03-13-2017, 07:29 PM   #3
cmack
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Welcome,

I hope you speak with a doctor about your concerns.

Give us a shout, any time,

cmack
03-14-2017, 07:53 PM   #4
sgholmes2002
 
Join Date: Feb 2017
Location: Frisco, Texas
Thanks for sharing your story. I am a mom with a teenage son with Crohn's. I will definitely share your story with him. It is a fight to get him to drink a probiotic or a nutritional drink and of course, I worry how he will do at college when I am not there. Your story will definitely help me show him the importance of staying on his meds and making healthy choices.

I cannot imagine what it is like to be a teenage boy with this disease. Adding to that a medicine that worsened your depression...my heart goes out to you. I know as a mom that I would rather my son be off of drugs that worsened his depression. You may not think it was a wise decision to go off because you got so very sick, but you are alive. Being on those drugs that made you sad, who knows what would have/could have happened. Coming from a family with a big history of depression,.... I really feel for that 18 year old kid. I am in NO WAY saying that anyone should get off of their meds, just saying I understand why you did it.
03-14-2017, 08:16 PM   #5
cmack
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Hi sgholmes2002,

Everybody has an opinion. That sounds fair.

Last edited by cmack; 03-15-2017 at 12:27 PM. Reason: typo
03-15-2017, 08:35 AM   #6
Jbrbr
 
Join Date: Mar 2017
Location: United Kingdom
Thanks for sharing your story. I am a mom with a teenage son with Crohn's. I will definitely share your story with him.
Hi sgholmes, thanks for your message. I hope you are both doing well.

I should clarify that, although I found that certain steroid treatments (specifically, oral and intravenous Prednisolone) caused mood disturbance, they did work to bring inflammation under control very quickly. Personally, I found that having active disease, malnutrition and fatigue for a prolonged period was more of a mood killer, so ultimately, I felt better after steroid treatment.

I have only taken short courses of corticosteroids: a week or two before beginning to diminish the dose. The mental effects, although quite disturbing at the time, diminished as I diminished the dosage. They may have been exacerbated by the fact that I was in a poor nutritional state on both occasions. I'm not aware of any permanent effects. The immunosuppressants I'm prescribed to maintain remission don't cause mood effects, and I believe that's generally the case for most people.

I hope that's a bit more reassuring!
03-15-2017, 10:35 AM   #7
cmack
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Jbrbr,

You have been through a lot. Make sure to take good care of yourself. I'm glad you joined us. Thanks for sharing and giving back.

cmack
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